Another One Bites the Dust



Audrey and Grandpa playing checkers at Vanderbilt.

 (lyrics)

Are you ready,

Are you ready for this

Are you hanging on the edge of your seat

Yep, another chemo bites the dust.

Don has spent a grand total of 375 days on Inlyta chemotherapy. It worked good for us, up until the last CT scan. For one year we had the tumors shrink and stable, however, our scan on April 5, 2013 showed that we have growth on only his bones. The tumors in his lungs and left kidney are all stable. This means that Inlyta has run its course and Don's kidney cancer has become immune to this therapy. So, when that happens, we turn to something else.

Here is what the results of the last CT scan is:

• Right fourth rib soft tissue mass extends into the adjacent lung. Previously measured 2.2 cm x 8 mm and has increased to 2.5 cm x 1.9 cm.
• Spleen, liver and pancreas is unchanged.
• Left kidney is stable
• Lesion on the anterolateral third rib on left measures 1.8 cm and previously measured 1.1 cm.
• Lesion on eighth rib is stable.
• Lesion in L4 has increased in size from mm to 1.2 cm.
• Lesion in the right acetabulum has disrupted the quadrilateral plate and extends into the anterior lip of the mediastinum and has increased in size and measures 2.5 cm in maximum diameter.
  
  

Having the cancer grow is scary. It's the worse case scenario that runs through your head that makes it even 

Grandkids are a great distraction! Having Audrey
and Asher at our house on the day we learned the
cancer had grown was just what we needed. Their smiles
made us forget that we were in tears hours before.

worse. I finally had a meltdown last Monday at work after receiving the copy of the scan. It was the kind of melt down that makes you happy that you wore water proof mascara that day. I have literally never cried so much at work in the 13.5 years I have worked here. It was by far the worst day, mostly because as I read the CT report, all the worst case ran through my head. Typically I can see a silver lining when having CT scans, however, this one that showed the bone metastases, just sent me in a downward spiral. If it wasn't for my co-workers I don't know what I would have done. Some people have close family members that they can lean on in times like these, however, I mostly have my awesome co-workers. I am blessed beyond measure to have them. They cried with me that day and helped so much.

After my breakdown I called Don and told him the results of the CT scan and his reaction was nothing like mine. His reply is "It's not as bad as I thought". Here I breakdown and wait for the sky to fall and Don takes it with a grain of salt. His reaction to the news helped calm me. He said to get out a ruler and look at how big a centimeter is. Apparently Don was expecting news that his tumors had gone to his liver, etc. and while going to the bone is bad, it isn't horrible.

 

So, knowing that Inlyta had run its course, we were off to have a follow-up appt. with Dr. Puzanov. We met with him and were given two options: a Phase 1 Dosing Escalation Study on a non-FDA approved drug called MLN0128 or a drug called Afinitor. Both are mTOR inhibitors (Mammalian target of rapamycin (mTOR) inhibitors block the activity of the mammalian target of rapamycin. Mammalian target of rapamycin is a protein kinase, which regulates growth factors that stimulate cell growth and angiogenesis. In certain cancers the mTOR pathway is more active. Mammalian target of rapamycin (mTOR) inhibitors are used in treatment of renal cancer and is being studied for use in other types of cancers.) We know that since the cancer has stopped responding to Inlyta, that we have to switch up the chemotherapy and confuse it. Therefore, we have to switch to a mTOR inhibitor drug.

After a full weekend of thinking it over, weighing the pros and cons, Don made the decision to fore go going onto the Clinical Study and to switch over to Afinitor.

AFINITOR is a type of medicine called an mTOR (mammalian target of rapamycin) inhibitor. It is the 

We aren't sure of the side effects of Afinitor,
but expect them to be like Sutent & Inlyta.

only mTOR inhibitor approved for the treatment of advanced kidney cancer that is available as a once-daily tablet. It directly affects the cancer in two places–in the cancer cell and in the blood vessels that help feed the cancer cells.^* This means that AFINITOR may help make it harder for the cancer to grow and spread to other parts of your body.

Understanding how AFINITOR works: The way AFINITOR works, also called its mechanism of action (MOA), is different from some other medications. AFINITOR affects the cancer in two places*:
The cancer cells & the blood vessels that help feed the cancer cells.
As a result, AFINITOR: May slow the growth and spread of kidney cancer. Can restrict cancer cells from getting the nutrition they need to grow. May slow the blood vessels from growing and supplying the tumor with blood. AFINITOR may also affect healthy, non-tumor cells.

So, we are onto our fourth chemotherapy in 4 years & 4 months since diagnosis. We have done (in order) Sutent, Avastin/Torisel Clinical Study and Inlyta. It is scary starting a new drug, with new side effects and to wait until a CT scan to see if it is working, however, we have been there, and done that 3 times now. Seems like we would be used to it, but nope! Each time is just as scary as the first time.

So, any day now a package will arrive at my office and that one package with 90 pills will be worth an estimated $24,840 for 3 months of chemotherapy. Thankfully we only will pay a grand total of $86.00 and for that we are eternally thankful. Without Don's insurance we would not be able to keep Don alive! Seriously, as morbid as that sounds, we wouldn't. His insurance is a blessing and his work is a blessing.



Chattanooga Pow Wow ~ Don danced in the

Honoring of Veterans



So, in a nut shell this is where we are. Starting all over with a new set of tumors that present new problems and a new drug that will present new issues as well. One issue Don is looking forward to is that this new drug will allow him to gain some of his weight back. The Inlyta had him shrinking like crazy ... I was expecting to shop for him in the Junior department before too long (OK ... I joke, but seriously he has bony legs and butt now!)

Thank you to those that have read this all and thank you to those of you that really care. Your texts, emails and phone calls are what support us. You really find out who your friends are when you have a prolonged illness. There are those that are supportive in the beginning, and then you have those friends that are there all along ... supportive from the beginning, those are real friends and we are thankful for you. You help us get through this day-by-day.

Until next time ......

Bout time for another update!

Just as the title says, it is time for another update! I can not believe that my last blog post was January 1. I am really slacking. But in all actuality, there hasn't been too much to write about. There has, however, it hasn't been towards Don's illness and that's what this blog is all about!

So, let's start with Don's health. Our last appointment at Vanderbilt Ingram Cancer Center on February 28, 2013 went pretty good. Don only had labs and an appointment with Dr. Puzanov. His labs looked great and 99.9% of the blood work was in normal ranges. I watch his Calcium levels closely ever since Dr. Puzanov said that it was one of the predictors that the cancer is becoming active. I am happy to report that the calcium level was in the normal range and minimally up from last month, but not enough to make it mean that the cancer is growing. The really only problem Don is having is maintaining his weight. It is still a daily struggle for him. Dr. Puzanov says that it is the Inlyta chemo he is taking. It constricts the blood vessels in the body, keeping the cancer from growing and the side effect is that it is not letting the food be absorbed like it needs to be. His body is not absorbing and riding him of waste before it is absorbing and fully digesting all the food. So, it's going to be a vicious cycle of constantly eating. Dr. P did stress that he has to start doing the Protein Supplements. He HAS to! He told Don that he has to treat it just like a medicine. Either make yourself a shake twice a day or drink the premixed drinks. Either way, it is something he has to do! I made it a point to let Dr. P know that Don has not doing that at all (boy you should have seen the dirty look Don gave me when I ratted him out!), but he had to know. So, I am hoping that since Dr. Puzanov explained that it is vital that he do the supplements, that Don will once again get serious with it. He needs to gain some weight and some muscle mass back.

Here is his weight stats:

02/28/13 192.9

12/26/12 205.0

11/29/12 204.3

10/25/12 204.8

09/26/12 205.5

09/13/12 208.3
08/29/12 207.5

06/20/12 222.1

05/16/12 230.3
04/16/12 243.7
04/06/12 242.2
03/22/12 248.9
03/07/12 246.9
02/23/12 249.8

So, in one year's time he has lost a total of 56.9 pounds. Yes, he did need to lose weight, but he now needs to stop!

 

We go back to Vanderbilt April 5, 2013 and have CT Scan. We will get the results the same day (unofficial results) which will be nice. To-date Don has been on Inlyta Chemo for 331 days! On the same dosage they started him with. We hope and pray that it is still doing it's job. However, if we need to change, there are some great new Kidney Cancer drugs already new on the horizon!     Enough of the boring stuff ... onto our life!

In January, Don whisked me off to Port Canaveral, FL were we boarded the Royal Caribbean's ship 'Freedom of the Seas'.  We went on a 7 day cruise to Bahamas, St. Thomas and St. Maarten. It was absolutely wonderful and I had my 40th birthday in St. Thomas. We went snorkeling there and were able to see sea turtles, stings rays, sea urchins, lots of colorful fish and a barracuda! It was a wonderful way to spend a birthday! Don and I had an amazing time on the cruise ship and the food was amazing. We had a balcony and drinking our coffee in the morning on the balcony was so nice. We are already planning our next cruise to somewhere!

 

We are continually to live our life!

 

Until next blog .....  

 

4 years ago today our world changed.

New Years Eve 12.31.08

Four years ago today (January 1, 2009) our world was forever changed with 3 little words "You have cancer".  Such a short phrase to make such a huge impact on your life.  I will never forget this day for as long as I live and not for the reason most think.

A little of the back story, Don and I went Cosmic Bowling with Kimberly and Don2 at Holiday Bowl for New Years. We stayed out till 1am and came home and crashed! But before we crashed Don went to the bathroom and noticed he was urinating blood.  We didn't think much about it then, just that he had an infection or something. The next morning Don got up and was still urinating blood.  He was going to go to our family Dr. Since we both assumed it was nothing too serious, I stayed home and laid on the couch and watched TV. 

Well, our family Dr. wasn't open, so, sensing that something just wasn't right, Don took himself to the Emergency Room. He texted me and told me. Said he would be right home.  So, he went to the ER, by himself. They ran the tests, took x-rays and scans - all the while by himself. Because I stayed home because it was nothing serous. They saw the tumor and told him they thought it was cancer - he was all alone when he got this news. He did send me a text and said it was serious. I could tell by the tone of the text that he wasn't kidding.  I grabbed some shoes and took off walking (he had the car) to the hospital. Luckily it is only a mile or less down our road. But as I was walking he drove by and picked me up.

We came home and sat in the driveway in our old Ford Windstar Van and he told me what the Dr. had told him. They saw something in his right kidney and thought it was kidney cancer. We both cried, scared and were so scared. They told Don to go see his Urologist first thing the next day.

So, after that, we went to Panera.  I remember standing out in the parking lot of Panera leaving his boss Keith a voicemail telling him that Don wouldn't be at work the next day that he needed to go to see his Urologist and it was important. I don't remember eating at Panera, I remember sitting there trying not to let the tears actually fall down my face. I remember thinking that this wasn't supposed to happen to us.

The next days were filled with Drs, blood work and 12 days after being diagnosed at the ER, Don had his entire right kidney removed (and a sliver of his liver).

Before we learned the news that would change our life.
12.31.08

It's amazing how vivid those memories are even after all this time. 4 years ago today ..... it feels like yesterday and then it feels like a lifetime ago. 

But that day 4 years ago, made us both look at life a lot different. We don't take anything for granted. We live life to the fullest and don't hold back on our emotions.

Today as the world is celebrating a New Year, we are really celebrating another year ... another year that we are grateful to be together and be alive and I have vowed from that day that I would always be there for Don whenever he gets the results for ANY tests! I will never let him go through that alone again.

So, that's my thoughts on today the first day of 2013!

Drum roll please ....

Having a cocktail on the Blue Moon boat
during the Christmas Boat Parade!

I have started several blogs since my last posted blog in October and their titles were "No, he can't just get a new kidney", "You really want to know my feelings?", "Wine is a good escape" and my all time favorite "Love me, love my chemo moods". These are all blogs that I could have posted and you all would have thought that I had lost my mind. I wanted to post so many times, however, they were blogs that I mostly wrote for myself and not for others to view. They were blogs that kept me from screaming and getting into my car and driving! I typically only try to post positive blogs. I could have posted blogs and have you all feel sorry for us, however, that isn't my nature to write an entire blog about ALL the bad stuff. I will mention it from time to time, but I try to not dwell on it. You all know that Cancer sucks!

So, that brings me to this lovely blog. On 12/26/12 Don had his 3rd scan since starting Inlyta April 2012.

Scan #1 on 6/11/12 showed that minimal shrinkage and also a splenic vein thrombosis. This is when he started the daily blood thinner shots.

Scan #2 on 9/26/12 showed 30-50% shrinkage; no new growths.

Waiting on Dr. Puzanov at
Vanderbilt. Don can nap anywhere!

So ... drum roll please!

Scan on 12/26/12 showed no new growth and everything is either stable or unchanged!  While we would rather have seen that they have shrunk, we will take stable and unchanged any day! I am including the detailed CT scan report from Vanderbilt Ingram Cancer Center.

CT CHEST, ABDOMEN, AND PELVIS WITHOUT AND WITH CONTRAST

History: 189.0 MALIGNANT NEOPLASM OF KIDNEY EXCEPT PELVIS

Comparison: CT chest, abdomen, and pelvis with contrast, 9/26/12
Findings:
Chest:
*The heart is normal in size and there is no pericardial effusion. The thoracic aorta and main pulmonary arteries are of normal caliber.
*There is no axillary lymphadenopathy. There has been no significant change in size of the 1 cm right paratracheal mediastinal node. A low-attenuation 1 cm mediastinal node anterior to the left main pulmonary artery is also stable. A right hilar node measuring 1.6 cm is also unchanged. Heterogeneous low attenuation infracarinal adenopathy appears stable.
*There is mild dependent bibasilar atelectasis. There is no focal consolidation, pleural effusion, or pneumothorax. There are no noncalcified pulmonary nodules or masses.
*Subcentimeter low-attenuation foci within the right lobe of the thyroid appears stable.

Abdomen/pelvis:
*There are postsurgical changes of right adrenalectomy and nephrectomy.
*There are multiple low-attenuation foci within the left kidney which are too small to characterize. The largest measuring 1.8 cm within the lower pole medially appears unchanged. Within the inferior pole of the left kidney there are two hyperdense foci on the precontrast phase sequence which also demonstrate questionable enhancement on the delayed phase images. The largest measures 1.7 cm. These are unchanged in size from the prior study from 9/26/12.
*The spleen, liver, and pancreas are unremarkable.
*There are stable nodular thickening of the left adrenal gland.
*The gallbladder has been surgically resected.
*The bowel is without evidence of obstruction. There is diverticulosis of the sigmoid colon. There is no free air or free fluid.
*Thrombus is again seen within the splenic vein with partial thrombus within the proximal main portal vein. There is mild infrarenal aneurysmal dilatation of the abdominal aorta measuring 2.2 cm. There is no mesenteric, retroperitoneal, or inguinal lymphadenopathy. Scattered subcentimeter mesenteric nodes are present.

MSK:
*A 2.8 cm expansile lytic lesion within the right posterior fourth rib appears stable. A expansile lytic lesion within the anterolateral left third rib is stable. A small lytic focus within the posterior left eighth rib is unchanged. A mixed lytic and sclerotic focus within the L4 vertebral body appears stable. A 1.2 cm lytic lesion within the left ilium is unchanged. A lytic lesion with cortical breakthrough within the right anterior acetabulum is also unchanged.

Impression:
1. Postsurgical changes of right adrenalectomy and nephrectomy.
2. Stable mediastinal and hilar adenopathy.
3. Multiple low-attenuation foci within the left kidney which are too small to characterize. Two hyperdense foci which demonstrate partial enhancement within the lower left renal pole appear unchanged from the prior study from 9/26/12. Consider further investigation with renal ultrasound or renal MRI with contrast.
4. Splenic vein thrombosis as before.
5. Multiple lytic lesions throughout the thoracolumbar spine, pelvis, and ribs appear unchanged.

Electronically signed by Morgan Dean Anderson on 12/27/2012 3:28 PM


So, we are unchanged and stable! Lovely things to hear when you have cancer! Don and I can now go on our Caribbean cruise in January with a clear mind that the cancer is under control!

179 days and counting on Inlyta

Time passes by so quickly ... have you come to the time in your life where you realize that yet? It is now October, where did my summer go? It just goes by way too fast! My mother said that this would happen one day, I would say things like her ... well, the time has come!

It's Fall or for those more sophisticated - it's Autumn.  I personally love Fall. I love when the leaves turn different colors, it is like a kaleidoscope of colors. I just plain love it, I always have. The Fall brings crisp mornings and makes it pleasant to do things outside. My partner on the other hand views Fall as death. The leaves dying and falling. He looks at the leaves in the yard with such disdain. He almost literally mourns Summer when Fall arrives. So, I am in love with this season, while my husband sits around and pouts about it! Very comical that we have been together almost 18 years! We are so different!



Don had CT technician take his picture!



Last week Don had his 4th CT scan of 2012 at Vanderbilt. He is still on Inlyta chemotherapy. Been on it for 179 days and counting. This CT scan had us nervous and filled with lots of scanxiety. However, neither one of us would admit this to each other. Reason #1329 why I was anxious is because of all the problems Don has had recently. With so many days of ickiness, you wonder if the chemotherapy is working or if the cancer is raging. You just have no idea. Not until the day of the CT scan. I try to put the 'what-if's' out of my head and think good thoughts. As my friend Tracy says "Thoughts become things". So only good thoughts from the Southern Hoff's! That isn't always the case, but it sounds good anyway!

Gators vs Vols game in Knoxville.

Did I mention how much I love Vanderbilt-Ingram Cancer Center? Let's share some love for them for a minute. This place is awesome! How many places can you have a CT scan and 5 hours later sit down with your Oncologist and get the entire CT scan results. SAME DAY! Typically it takes days and days to get results at other hospitals, however, we are able each time to get the results the same day. This is crucial when you are dealing with cancer. You don't want to wait and agonize over what the results might be. Because if you have to do that and we have done it before you think worse case sceanrio. So, getting them same day is truly amazing and getting the news you want to hear is phenomenal!

The results from Don's latest scan where better than either of us could have managed.  It shows no new growth and all the tumors have shrunk 30% - 50%, even the bone lesions have shrunk. As soon as we received those results, I felt like that elephant stepped down from my shoulders. Literally, we were smiling ear-to-ear and as soon as Dr. Puzanov left the office we both turned to each other and embraced. It is an amazing feeling when you feel optimistic. Amazing that you know that at that moment everything is right in the world and at that moment, cancer is not stealing your soul-mate.

So, the plan of action is to keep with the same. Don will continue to take 5mg twice daily of Inlyta and if all goes as planned, the cancer will continue to shrink. Dr. Puzanov thought about upping his dosage, however, he is experiencing some not-so-pleasant side effects, so since it is working, we aren't going to change. One of the side effects he still battles is loss of appetite. Don now weighs 197 lbs, while that is not a bad weight for him, he needs to maintain this weight. We have started a protein shake and while on the road he is going to do the Ensure Protein drinks. They may not taste like the real thing, but he's gotta suck it up and drink it anyway!

So, we are going to continue to live our lives the best we can. Spend as much time with Kimberly and Asher before their big move to Illinois, attend Audrey's soccer games and not take life (or each other) for granted.

While we haven't beaten kidney cancer just yet, we are slowly taking it down!

Ups and downs of our new normal

It's an odd feeling watching the one you love feel pain.  Mostly because I feel so helpless in helping him. Don has had his fair share of ups and downs lately. And at times I feel like I contribute to his downs as I too get a little frustrated at the things he can't do now. I know, I know, that sounds horrible for me, but it's the truth.  This slowing down is hard for everyone and it is taking me some time to get used to the fact that this new chemo and the assortment of medications he is on has made him a little more fatigued, a little more agitated and a little more lean. Yes, lean ... he is now 202.5 lbs soaking wet. Hard to believe that he has lot so much weight over the last year. This is mostly due to the Inlyta chemo and his new thyroid medication. He is still in the good weight for his height, however, we need to bulk him up a little more. I think I am going to start putting protein mix in everything he eats/drinks! All of that being said, please note that it is the chemo that is making him fatigued and a little bit 'not himself' and not the cancer. Even though they go hand-in-hand, it's the damn drugs that make him feel bad 9 times out of 10 and not the actual cancer! Most days he feels good ... some days he does not. We take what we get and deal with it the best we can.

Don has had a little issues the last few weeks. Just the other day he got to spend half a day at Vanderbilt Emergency Room with chest/shoulder pain. They were not able to diagnosis what was going on, but here are the tests they ran trying to figure it out: (in order of received!)

1. Complete blood work panel
2. EKG
3. X-Ray of chest
4. Repeat blood work to compare
5. Ultrasound of legs
6. Nuclear X-Ray of lungs & chest

Never did figure out what was causing the pain, however, we know that he doesn't have any other blood clots, issues ... as they ruled everything out other than the cancer! It might be a side effect of one of his medicines, or it might be a sign that he needs to restart the Bone Strengthening agent very soon. So, after all those tests at the ER, they found no real reason for the pain in his chest, so he is adding a new Dr. to our portfolio ... a Cardiologist and will meet with him very soon for a Stress Echo test.

As if that wasn't enough ... Don got to see an Oral Surgeon last week! His 2 teeth he had pulled back in April never healed. He has been patiently waiting on them to heal so he can get his partials, however, the chemo was making healing difficult. So, Oral Surgeon cut some bone, stitched up the gum and hopefully it is all better! He is really looking forward to having those teeth back! It would be great to have partials by Christmas!

Enough of that stuff, onto what fun stuff we did in August! We had a great time on our family vacation in Florida. We took day trips to Walt Disney World Magic Kingdom, where we rode Dumbo and got to see Princesses, trips to Marineland to see dolphins, boat trips to look for sand dollars and dolphin viewing and countless memories made of playing on the beach! Having Don2, Kimberly and Asher with us there was so much fun! It was a wonderful family vacation and something I hope we can do every couple of years with the Putnams!

Don and I also went to Prosser, Washington for Becky & Charles Isley's Annual Harvest Party. We had a great time and Don got to visit with a lot of his high school friends. It was such a great trip, we are already making plans on going back next year!

Also, Don and I took a few hours and sightseeing in Seattle! We went to the top of the Space Needle and drove all around downtown. Don even got to have some Ivar's Clam Chowder and Halibut!

So, to all the people that 'thank me' for taking care of Don, I just don't know how to respond. Not sure why you are thanking me, as I am doing what I do because he is my husband, my soul-mate and my best friend. There is no need to 'thank me' .... I do what I do because together we are a team and together we will get through this. I guess if you want to 'thank me' you can 'thank me' for not killing him over his obsessive need to watch Football all weekend .... now that is something I can be thanked for!

Until next time .....

Stress Relief vaca is coming up!

The Southern Hoff's are getting ready to take our annual vacation and it is very much needed!

We have been through a lot in this past year. Don's CT scan results every 8 weeks have been good and bad. We had to leave the Clinical Trial at Vanderbilt because of cancer growth which resulted in a change of chemo protocol. The change was difficult only because Don being on bi-weekly infusions at Vanderbilt was our new normal. Don started having issues with his pancreas and at the end of September 2011 he spent a week in the hospital. His enzymes go up - freaks every one out, then go back normal. He's lost over 50lbs and has a little appetite. So, in a nut shell we need this vacation!

And the one rule about vacation is that cancer doesn't exist! No worrying, stressing or talking about it!

It's going to be a special trip this year cause not only are Erica and Audrey going with us, but Kimberly, Don2 and Asher are coming too! My small nuclear family all together at the beach! Life is good and I am looking forward to some great memories!

Looking forward to laying out in the sun with my girls Erica & Kimberly. Looking forward to some quality time. Family :-)

So remember, don't let cancer define you. Don't let it stop you from living your life. Don't give up - ever!

"Keep on swimming!"

New Chemo gets a thumbs up!

Hanging out while getting
bone strengthening infusion.

Don has been on the new oral chemotherapy pill Inlyta for approximately 76 days.  Inlyta is the newest and greatest drug to treat Kidney Cancer. It was FDA approved in January 2012.  Since he started taking the Inlyta, we have been nervous about what it was doing inside Don's body. You never know when you start a new chemotherapy if it's the one for you, you never know if it will stop the cancer from growing/spreading or if it will let things run rampant. So, we have been very anxious for the first scan since he started taking it. Don had a CT Scan June 11, 2012 and we received the official results while we were in Arkansas.

The results are: Significant interval decrease in size of the widespread metastatic disease, including the mediastinal and right hilar adenopathy, bilateral pulmonary nodules, soft tissue nodule from the lytic lesion of the left 3rd rib, left adrenal mass, renal cell carcinomas of the left kidney, and paraspinal musculature enhancing nodules.

Yep, all the tumors have shrunk an estimated 30-50%! This is an amazing feeling knowing that the cancer is not growing and most importantly not spreading! It did spread to his ribs on the previous CT scan in April 2012, so seeing that it is shrinking with the Inlyta is such a blessing.

Don does have a few other issues. The Inlyta is causing his thyroid is go a little crazy, however, that just means that he gets to pop another pill! It is typical for Inltya to do this, so we are not worried.  However, that could help explain why he was loosing weight so fast - his thyroid hormone is too high. However, we should have that under control very soon. Dr. Puzanov just upped the dosage, so any day now! Another thing is that he has a blood clot in his abdomen.

Here is what the Dr. says about the blood clot on the CT scan: Splenic vein thrombosis and partial main portal vein thrombosis extending to the right and left branches have developed since 4/5/12.

Getting ready to give
himself his first shot!

So, he is taking a daily shot of Lovaxen (blood thinner) to treat this. He takes the shot every night into his abdomen, much like a diabetic has to give themselves shots. His needle is small and he is doing very well with giving himself shots! He will take the shots for 3 months and then can either stay on the shots, or move to an oral pill such as Coumiden. Dr. Puzanov did tell us that he will have to be on the blood thinner for LIFE. But if that keeps him alive ... he will do it!  When we found out he had the blood clot we were traveling through Little Rock, Arkansas.  I told Don that if a blood clot killed him I was going to be very mad!! ;-)  Dr. Puzanov is worried enough about the clot to put him on medicine, but is not worried about it breaking off and traveling to heart or lungs - it would most likely travel to liver. But, he's got the medicine, so we are good!  Also, thanks to his cousin Sandy for giving him his first shot in Arkansas! Also, thanks to cousin Pat for taking a picture of him getting the shot! LOL



Reading my iPad at Vandy!



So, that is our great news!  Cancer is shrinking and Don is feeling good. He has stopped loosing weight (thank goodness!) and his energy has returned. 

As always, we are living with Cancer, but not letting it define or shape who we are!

Living life with cancer!



It is officially summer 2012 and we have already been on the move!  The Southern Hoff's have been doing so much fun stuff!  I want everyone to know that reads this is that Cancer CAN NOT keep you down! Don is living proof that even though you have cancer you can have a life!



Don & Homer at Braves game



Don and I kicked off the summer fun back in May for Don's 59th birthday! We went to Atlanta for a long weekend.  We treated ourselves to an awesome dinner at Ruth's Chris Steakhouse and it was wonderful! Probably the most expensive steak we will ever eat in our entire life, but it was worth the extra little splurge! We topped off the weekend by going to a Braves game. We had great seats behind home plate and even had a butler to get our food and drinks! It was a wonderful game even though the Braves lost to the Nationals. The weather was perfect and we even did a dip in the hotel pool before the game!





Calling all Parrotheads! If you are a true Jimmy Buffet fan, you are a Parrothead and Don and I are true Parrotheads! On June 9 we boarded a bus full of fellow Parrotheads and went to Atlanta for the Jimmy Buffet concert. The fun and activities that lead up to the concert are so crazy! We tailgate for 8 hours prior to the concert. The atmosphere of the people tailgating is infectious, everyone is there for a good time and it is hard to find someone in a bad mood! It's a Jimmy Buffet concert so you will see lots of floral shirts, leis, pirates and lots of skin! Guys and girls in coconut bras are the norm! Free margaritas and shots of rum and tequila are at every turn. Just a quick walk through the parking lot will get you a great buzz (just ask Don!) We were lucky that we had a nice cool bus that we could go in a cool off, as it was near 90 that day. Don cooked out some killer kabobs and we enjoyed our free margaritas and our Landshark beer and waited for the concert.  The concert was awesome! Jimmy had a special guest, Zac Brown and they sang a few songs together. It was great! We got home around 2am the next day and can't wait until the concert next year!





Don & Audrey on a Razorback

University of Arkansas campus



Cousins: Don, Travis & Shane

Next we traveled to Arkansas in June for Don's 2nd cousin Shane's wedding.  Springdale, Arkansas is 10.5 hours away from Chattanooga and we took Audrey with us so she could have a Road Trip to visit new cousins! Shane and Caroline's wedding was beautiful and the reception was so much fun. They had a live band for the reception and Audrey danced for 2.5 hours straight! She loves to dance! Other than the wedding, it was a great time to visit with Don's family. These are the relatives from his Dad's side of the family. Lots of cousins, 2nd cousins and 3rd cousins! So much love with these folks. They kept us laughing and there was never a dull moment with them! We look forward to their visit to Chattanooga or our visit again in Arkansas! OH! Don and I also took a quick trip to Oklahoma for lunch ... just so we could tell Audrey that she went to Oklahoma! ;-)



We have more fun stuff planned for the rest of the summer. Next big trip is our 10-day Florida vacation in August. Looking forward to having Erica and Audrey again with us this year, and hopefully Lisa. Big happy news is that Kimberly, Don and new son Asher will be coming as well! THE WHOLE FAMILY!  I have dreamed of a family vacation on the beach with kids ... building sand castles and lots of laughs and love and it looks like we are finally getting our wish! So happy to have Audrey and Asher in our lives ... they make it so much more filling!

So, we tell you what we have been doing and what we are going to do, so you will see that Cancer can not keep you down. It can't stop you from living. So what, you have cancer. It's a big deal, but it doesn't have to shape your life. My favorite quote is from Shawshank Redemption ... "Get busy living, or get busy dying". Don and I are definitely getting busy living!



Until next time ... keep living!





It truly is a roller coaster ride :/

Don and I were still riding high from our last ct scan results from 9 short weeks ago that showed everything was stable when Cancer once again showed that it didn't want to be ignored.

You always know its bad when your Dr walks into the room and asks you "how are you feeling? Do you have any chest pain"? That's exactly what Dr. Puzanov asked when he saw us on Friday, April 6, 2012.

He then sat down and said that the cancer is progressing and it's time to stop Avastin. Stopping a chemotherapy that you've been taking since November 2010 is scary. Mostly because we KNOW Avastin. We know it's side effects, we know what to expect ... now we don't. We are once again entering into uncharted territory.

Don's ct scan shows that the kidney cancer tumor that he has on the outside of his lung has now spread to his ribs. He has a small tumor eating at his rib bone. He has 2 'spots' on his ribs. So that means that the cancer has gotten use to Avastin and it's become ineffective.

Dr. Puzanov wants to start Don on Intyla. It is an oral chemotherapy that was just approved by the FDA in January 2012. It is the newest and shiniest drug on the market. Don will take it twice a day, every day.


While Dr. P. was explaining the drug and the possible side effects I was already on my iPad seeing if our insurance would cover it. At the end of the conversation he tells us that we need to meet with Vanderbilt Financial since it is such a new drug and authorization will need to be submitted etc. However, our awesome Blue Cross Blue Shield insurance through TVA covered it - with no authorization! Even Dr. P was amazed!

I immediately went to the pharmacy inside Vanderbilt and submitted the prescription - doubting they had it since it was so bright and shiny, but the stars were all aligned for us and they had it! 20 minutes later we had shocked and amazed even the pharmacy folks by not needing authorization.

Not wanting to wait to start his new chemotherapy, Don popped his first Intyla pill right there at Vanderbilt! We are unsure of what to expect as far as side effects, and pray they will go unnoticeable.

Don will begin bi-weekly infusions of a bone strengthening agent in a few weeks to help heal his rib.

Cancer is a scary thing - it truly brings you to the raw emotions of 'what if'. It steals away that carefree life you dreamed of and it scares the hell out of you. Tears fall from your eyes without notice and it's sometimes hard to smile when you feel so helpless. You try to tell everyone you are fine, but deep down inside you are like a little child scared to ride your bike without training wheels. You discover that life is so much more precious than you ever realized.

I will be updating more frequently now with the side effects etc that Don is having with this new drug.

Now after you've read this blog, go hug your husband, wife, mom, dad etc. that is your world and if you are healthy, don't take it for granted.

As Don and I move on to this new phase with Intyla, we abandon our comfortable normal we had with Avastin and will forge ahead and grasp for a new normal ... once again.

Please support Team Hoff in the Chattanooga Relay for Life.

What's a six letter word for unchanged?

STABLE!!

Yep, according to our latest CT scan we are stable. Which actually really amazes me. I had thought that since Don was off Avastin chemo for 7 weeks that we would have some major growth, but amazingly we do not! What that really means to us is his Kidney Cancer is a slow grower. So, knowing that if something happens again and he can't resume chemo, we will be OK for a little bit without chemo. However, Don feels so much better when he is receiving chemo! Sounds strange but it is so true. At least when he is on chemo, he feels like he is battling the beast!

So, we are off again for another round of Avstin chemo today and still celebrating our results we received 2 weeks ago!

Twitter as an emotional outlet!?!

When Don and I began this cancer journey 3 years ago, I knew that I was going to need outlets to express myself. Just mindlessly talking to myself was not the answer, so I turned to this blog and Twitter. I am on Facebook, however, my audience consists of folks that I need to censor myself around from telling exactly how I feel at any given moment. So, I blindly turned to Twitter. It was anonymous, I use the screen name 'JustMeSusie' and I went about tweeting about how I was feeling about Kidney Cancer. I tweeted when I was up, I tweeted when I was down. I have had 'woe is me moments' and many many pity parties on twitter. I thought I was doing all this and no was noticing ... but people were noticing. Somewhere along the way I reached a very small audience of fellow cancer patients and caregivers who feel the same way that I do. I tweeted and they responded with words of encouragement. Strangers who read my heartfelt tweets and thought they would lift me up in my time of need. How amazing is that?

When you are either the cancer patient or a caregiver, you need an outlet. You think that you don't want anyone to notice you having a mini breakdown, but when someone does notice ... you relish in it. You smile because for that one moment someone somewhere understands exactly what you are feeling and gets it. You don't feel so alone. Recently I began following a fellow twit with username 'CallitFred'. He is currently going through chemo/radiation in Canada. He calls his cancer Fred, as his mother would cry whenever she heard the word cancer. His tweets are both witty and poignant. He tweets from the heart and I find so much support in his tweets that I look forward to reading them. Cancer is such a terrible thing, that when people across the world can connect through cancer and by reading a few tweets from people can help your day, it's so nice. It's nice to know that what you are feeling is normal. That what you are thinking is not ludicrous and what you are worried about is the same thing that thousands of other patients/caregivers are worried about too.

If you are on Twitter, search for @CallitFred and read a couple of his tweets, you will be amazed at how strong cancer patients are. Also follow, @StupidCancer, you will learn so much!!

So, Twitter ... I thank you. Thank you for giving me another outlet to say #cancersucks.

BTW, just in case you all wanted to know an update on the happiest cancer patient aka Don Hoff, he is doing great. His last infusion (1.26.12) went smoothly and we are going this Thursday (2.9.12) for a CT scan and infusion. Dr. Puzanov has warned me to not freak out over the CT Scan, since Don was off chemo for 7 weeks, his cancer will almost assuredly have grown and/or spread. However, we are back on Avastin, so things will be OK. I am psyching myself up to not freak out ... again I am psyching myself up to not freak out, however, I am sure there will be a little freak when we see the results. But the good news is that he is back on Avastin and in a few more months we will be back on that 'stable' list again.


I"m so optimistic I'd go after Moby Dick in a row boat and take the tartar sauce with me. ~ Zig Ziglar

Follow me on Twitter!

A New Era Begins

After going 70,560 minutes without Avastin chemo, Don received his biweekly dose. It was a bittersweet moment when we found out that he was going to indeed receive chemo on 1/12/12. As at the same time we also learned that they had to remove him from the Clinical Study Program. It was turning out that their protocol was keeping Don from receiving the chemo. Don's lipase is still elevated and according to the strict directives of the study, his lipase was too high to receive chemo. However, if they removed him from the study, he could still receive chemo since this is not something they usually check for when giving the treatment.

So, we are no longer a part of the study. The saddest part of not being on the study is that we no longer have our Special CTO Nurse Pam. This is by far the worst part. It's been almost a year since Pam came into our lives and there has not been a week that I haven't contacted her. So, not having her to lean on for information, etc. is going to be a real big adjustment. Now we are just regular old cancer patients at Vanderbilt. Yes, we will still receive our valet parking, however, no longer will there be someone marking ASAP on our lab results, no one coming out and chi-chatting with us about what is going on and no one making our appts for us! Yep, we are not special anymore! It was good while it lasted and who knows maybe down the road Dr. Puzanov will find Don another clinical study to be a part of.

It was a great appt. with Dr. Puzanov and hearing him say it just wasn't worth keeping him on the study if he couldn't be treated. Actually he said, "in cases like these, I say screw the study." So, SCREW THE STUDY! Onward and upward to better things! We did find out that there are about 8 other drugs, some FDA approved, some not, that will be available for Don to take once the Avastin has run it's course. So, our options just keep getting better.

Today, January 13 actually marks the 3 years since Don had his kidney removed and we knew for sure that it was kidney cancer. In some ways it feels like yesterday and in some ways it feels like we have been dealing with cancer for a lifetime. Life has changed so much from that moment 3 years ago. We appreciate life and the little things much much more. We fight less and love more. We leave dirty dishes in the sink to go spend the day at the lake together. We leave clothes unfolded so we can go outside and play with the dogs or Audrey. We go to the movies more, we hug more, we laugh more and we realize that at the blink of the eye either one of us could be gone.

Cancer has strengthened our marriage and made it better. I am so thankful for my job letting me go to Don's chemo's 2x a month. Being there during his chemo is so important to both of us. It saddens me when I see folks there alone.

Cancer has made us a team - united in the war against kidney cancer. So, we move onto the next chapter of being a nothing special cancer patient with hope ... hope that we can continue for a very long long time being a nothing special cancer patient!

Remember ... life is too short to worry that your partner didn't make the bed, pick up his socks, take out the trash, etc. Enjoy each other, appreciate each other and most important treat each day like it is the last.

Sidelined by Lipase yet again

Once again Don's Lipase has reared it's ugly head and has kept him from receiving Avastin chemo last week. For those of you not accustomed to the biweekly bloodwork and deciphering the largo, Lipase is secreted from the pancreas, and is the primary lipase (enzyme) that hydrolyzes (breaks down) dietary fat molecules in the human digestive system, converting triglyceride substrates found in ingested oils to monoglycerides and free fatty acids.

High amounts of lipase may be found in the blood when the pancreas is damaged or when the tube leading from the pancreas (pancreatic duct) to the beginning of the small intestine is blocked.

Drs have been scratching their heads trying to figure out why his lipase is elevated week after week.

Here is the breakdown of how the treatment of the high lipase has gone:

• Lipase elevation due to high triglycerides


• Start Zocor to treat high triglycerides


• Lipase still elevated after adding Zocor


• Remove Zocor


• Wait


• Wait


• Wait


• Still no clue why it is elevated, so more tests!

It is really frustrating when my Google searches haven't rendered an answer either! I don't think I am going to get my honorary MD after my name if my Google searches keep finding nothing!



So, our next appt. is Thursday, January 12, 2012 and we will have the customary bloodwork, then lunch at Vanderbilt cafeteria, then meet with Dr. Puzanov. If lipase is still elevated, Don will be removed from the Clinical Study, no ifs ands or buts. He will have to be removed in order to receive chemo and after not receiving chemo for 6 weeks ... he HAS to get chemo! We need chemo, we want chemo! With no chemo, we are just letting those damn cancer bugs to party up in Don's body and that is not acceptable!

The pictures on this blog are of Don at Vanderbilt on December 22, 2011 - he dressed as Santa to recieve chemo. This is the second year he has dressed as Santa and this is also the second year that when he did this, he couldn't receive chemo because of high levels or something (last year it was his liver!), so unfortunately for 2012 ... Santa will not make an appearance at Vanderbilt. I am a strong believer in jinx, so that's it ... it is retired! He can dress as an elf if he wants, just no Santa :)

"Cancer doesn't effect an individual, it effects a family"

Lipase & Amylase are not nice words.

Updating this blog hasn't been a real priority lately and I apologize. It's hard sometimes to sit down and write when so much is on your mind and going on around you. Deciding if you should spill your guts and emotions or sugar coat what is going on. So, needless to say I have been conflicted on what to write, so I have written nothing.

And now it's time to update - no sugar coating just put it out there so you know what we know.

Don hasn't been able to have chemo since November 24. And that alone is a huge problem. He hasn't been able to have chemo because his Lipase & Amylase enzymes have been high on the blood work. These are the enzymes that wrecked havoc back in September and ended him in the hospital for a week. These are the pancreatic enzymes. The Drs have ideas on what is causing them to be elevated, but it is more of an educated guess at this point. They think it could be Don's high triglycerides or it could be the Triplix or Zocor medicines that are supposed to treat the triglycerides that could be causing it. It's almost a case of damned if you do, damned if you don't. So, in trying to fix things they have removed the Zocor and he will have blood work again January 5 to test his amylase & lipase.

We've also been dealing with conflicting information. Dr. Puzanov measures the key tumors that were identified in 2010. And those tumors show a 34% decrease in size. Which is GREAT! But when you read the radiologist report, you see so much more. Almost wish I didn't have access to read this report. As after I read it, I have tears streaming down my face and on speed dial to Vanderbilt for answers. And to be honest, I haven't gotten the answers I am looking for. On one page Don is doing great and on one report there is a scenario of meta sis to left kidney and possibly the pancreas. But both of those are maybes and can't be determined yet. It's just frustrating.

So, while we are hearing 34% shrinkage and celebrating, one week later we receive a report that says this:

1. Stable to slightly increased mediastinal adenopathy when compared to 10/5/11.

2. Approximately 50 small pulmonary metastases, unchanged.

3. Three enhancing masses in the left kidney, either metastases or new renal cell carcinomas. The mass in the lateral interpolar region is unchanged, while the two masses in the lower pole have slightly increased in size.

4. Interval increase in nodular expansion of the left adrenal gland.

5. Two enhancing foci in the head and neck of the pancreas, poorly visualized due to suboptimal contrast bolus timing.
So, what are we to think? So, I worry about things I don't even know about. I worry that I may be temporary insane and close myself up in a cave and cry but then I know that things aren't that bad. I have to have faith that Dr. Puzanov has Don's best interests in treating this Cancer and that he is still being the progressive Dr. we love.

When we go back to Vanderbilt on January 5, 2012 if his lipase & amylase are still high, our medical team and us have decided that it is time for Don to come off the Clinical Trial Study. The study is what is keeping him from receiving chemo, if he is off the study and his levels are elevated, he can still have chemo as we don't have to follow the strict protocol. So, that's where we are .... in limbo. The thing that worries me about coming off the study is the specialized care that Don receives. I don't want that to change ... so we will see.

Don is still feeling great and looking great! He is working, cleaning, taking out the trash, doing dishes, you know normal stuff! He doesn't feel or look like he has cancer ... it's just Drs keep telling us that he does! LOL

Our 3 year anniversary of the diagnosis of Renal Cell Carcinoma is coming up in January 1, 2012. We will celebrate it with family and know that we are not alone in this roller coaster!