Kevin from California, US (Dx Feb 2012) - RIP Oct 17, 2014

[wangcns]

Yes, we did have Dr. Eilber look over the scans. He didn't give a definitive yes or no, he said it would be a difficult surgery with considerable risks and he asked to be added to the tumor roundtable where they discussed Kevin's case. He mentioned possibly trying other possible treatments, like tying off the blood vessels to the tumor, but he did not seem confident in a conventional surgical resection as a means to remove the tumor.

Dr. Tredway didn't really discuss the risks very thoroughly, unfortunately. I was able to contact Dr. Peter Gerszten over at UPMC, Kevin is picking up MRI scans to send to him today. The thing is, UCLA also has a similar program, which Dr. Gerszten mentioned when he replied to me, so we're going to talk with our doctors at UCLA some more and see what other options they might propose along with consulting with Dr. Gerszten.

Also, Kevin's facial hair has turned white from the Pazo. His mustache is still growing strong, but it's getting a little frosty underneath. My silver fox! Our onc wants to wait for the 6-week mark to do a scan, so in 2 weeks, we'll see if there's been any measurable effect.

[Bonni Hess]

Thank you for your very thoughtful updates Connie. I am so sorry that surgical removal of Kevin's spinal tumor poses such considerable risks and possible very debilitating post op side effects. While Kevin continues to take Pazopanib as he waits for his six week status scans in two weeks to determine if Pazopanib is working to shrink his spinal and lung mets, I Hope that he and you will be able to find out if some type of radiosurgery such as Synergy may be a possible treatment option and surgical alternative for his concerning spinal met. If you haven't already read it, Mario who has been taking Pazopanib (aka Votrient) for the past several months, posted a very encouraging update yesterday in the Pazopanib sub topic under the TKI Systemic Treatment main topic on this Discussion Board. Thankfully his three month status scans on May 14th showed significant shrinkage of his lung mets . Unfortunately, he is suffering very severe side effects from the Pazopanib since increasing his dosage of the drug from 400 mg. to 600 mg. and now 800 mg. per day. What Pazopanib dosage is Kevin currently taking?
Also, when we had the special joy and privilege of meeting and sharing time together with you and and Kevin when you were in Seattle last week to consult with Dr. Tredway, you mentioned that it had been a while since Kevin had a brain MRI so I would like to encourage you to schedule one for him if it has been longer than six months since his last brain MRI. Because he has now had metastasis to his spine, it is especially important to be very pro-active and vigilant with scans to ensure that if any new mets develop anywhere in his body that they are found and treated at their smallest possible size. As I have posted in the Pazopanib sub topic, a young woman who is on a Pazopanib/Verinostat Clinical Trial at MD Anderson was heartbreakingly recently diagnosed with four one centimeter brain mets despite having had monthly chest scans which had been relatively stable as well as having apparent shrinkage of her spinal tumor. The diagnosis of her brain mets concerns me regarding the possibility that Pazopanib may not cross the blood brain barriar to prevent metastatic spread of ASPS to the brain, so this is an area which should be closely followed.
Please know that I am holding Kevin and you very close in my heart and most caring thoughts dear Connie, and that I am holding VERY tight to Hope that Kevin's Pazopanib status scans in two weeks will show a very postive response to the Pazopanib, stable disease, and shrinkage of his spinal and lung mets. Take care and keep in touch as you are able.
With special hugs, deepest caring, healing wishes for Kevin, warm friendship, and continued Hope,
Bonni

[Olga]

Connie, I just wanted to make sure that you saw this entry http://www.cureasps.org/forum/posting.p ... =post&f=66 about the new drug Cabozantinib might be used to reduce the unresectable soft tissue/bone mets.

[wangcns]

Thanks for bringing that to my attention, Olga, I will definitely check that out.

Saw Dr. Federman up at UCLA on Monday, Kevin got injected with XGEVA to prevent bone breakage, etc. They did an MRI of his spine tumor and a full body PET scan, but we haven't heard the results. Kevin continues to progress with greatly reduced pain and increased mobility, a chronic 7 down to a 1, maybe a 2 on the pain scale. Noah doesn't think this progress can be attributed to the steroids alone so hopefully this means the Pazopanib is having an effect on shrinking the sacrum tumor. I guess we'll find out when we hear about the scans. Kevin's side effects on Pazo have been minimal at 6 weeks in--night sweats, twitchy hands, occasional fatigue and nausea, and the hair turning white. He's also going to be slowly weaning off the steroids. I think we're going to try pursuing radiosurgery some more with the SBRT. We are getting a second opinion from Univ. of Pittsburgh, seeing if they have anything to add to what the rad oncs at UCLA think.

There's an NY-ESO clinical trial that Kevin has agreed to be screened for, seems like pretty cool stuff. They take stem cells from the patient's body and reprogram them to target the NY-ESO antigen. We don't know yet if that antigen is expressed in Kevin's ASPS cells, so they will test the tumor sample they have and get back to us. It sounds like a whole process, involves high chemo dose for 5 days to weaken the immune system so they won't reject the re-engineered stem cells and about 3-4 weeks of hospitalization post injection, if I read the study right.

[Ivan]

Constant 7/10 pain? Holy crap, that's torture. That's "I just woke up from a thoracotomy" kind of thing I am very glad it has been reduced well down.

[D.ap]

Kevin and Connie
Great news about the pain reduction !
Here's to good news on the scans .
Debbie

[Bonni Hess]

Dear Connie,
Thank you for your thoughtful update and for the very good news about Kevin's greatly reduced pain . I am so very Hopeful that Kevin's reduced pain is the result of sacrum tumor shrinkage caused by the Pazopanib, and am sending my very best wishes and most positive thoughts your way for very good scan results which I will be anxiously awaiting when your time allows. I am also grateful that Kevin is continuing to tolerate the Pazopanib well with minimal negative side effects.
The NY-ESO Trial sounds interesting. It is not one which I am personally familiar with so I will be anxious to hear more about it and if Kevin is going to participate in it if his tumor tissue test comes back positive for the NY-ESO antigen. When we had Brittany's tumor tissue tested five years ago it tested fairly low for C-met, but high for VEGF-R which may be why she had an unsuccessful response to ARQ-197 which is a C-met inhibitor, but has thankfully had a very successful response thus far to Cediranib which targets vEGF-R. I Hope that the SBRT radiosurgery will prove to be a viable treatment option to further shrink/destroy Kevin's sacrum tumor in conjunction with the Pazopanib, and I will be anxiously waiting to hear the results of the second opinion from the doctors at the Universtiy of Pittsburgh regarding the possibility of using this treatment.
Please give Kevin and yourself special hugs from Brittany, Jim, and me, take care, and keep in touch as you are able.
With special caring thoughts, healing wishes for Kevin, and continued Hope,
Bonni

[D.ap]

Connie and Kevin
When time allows I would really like to hear how the scans came out.
Thinking a lot about you both

Love
Debbie

[Kkgriffith]

hello all!

So the results of my full body PET/CT and sacrum MRI came back but they have not sent me the official report yet (I keep asking but they have always been slow with documentation). Noah told that there is evidence of slight shrinkage in the sacrum tumor(yay!) which is why I'm feeling better, as well as stabilization of my lung and sternum mets(they found one last year growing in the center of my sternum). The pain reduction was a combination of the 4mg/day of Decadron and the Vortient/Pazopanib which I'm noticing now since I'm off the steroid now. The chronic pain that I had for 3 months was the tumor inflammation pushing against my bone/sciatic nerves and the oxyc/percocets didn't help much. I feel like the steroid had a few complimentary side effects to the pazopanib (ex. raging appetite, energy, weight gain) but some not-so-good like fat accumulation in strange areas,my head was starting to enlarge, less sleep, even slower healing, chemical imbalance and some others that develop after long term use. These days I have weakness/acute pain in my lower back when I move my back in certain positions but it's nothing compared to what it was.....Yea Ivan, the 2-4 week thoracotamy recovery was easy compared to 3 months of constant pain, at least in Germany I could sit still and be comfortable a few days after surgery which wasn't the case in February.

Some info about my Pazopanib treatment (I'll re-post some of this on the pazo thread):

I take 800mg a night (usually around midnight) 2 hours after I eat dinner then If I can sleep I sleep, if not I wait an hour after I take the Pazo then I eat cereal or a late night snack which seems to help with stomach issues(next morning) then I play some PC games and go to sleep.
I had a few side effects (like the white hair and slow healing) when I was on the Decadron but now I'm noticing fatigue, less appetite than before and indigestion/gas/diarrhea which I didn't have a couple weeks ago. I also have increased mouth sensitivity AKA I can't eat anything spicy(sad times) and my toothpaste kinda burns now. Overall the 800mg dosage seems to be manageable after 2 months of treatment but that seems to be the safe period for Votrient side effects. I'm expecting more to come.
The XGEVA injection happens once a month. I had my first one 2 weeks ago and can't say I notice anything different when I'm on it. The reason I'm on this is because of the bone issues that can develop later.

My lab results also showed high potassium levels which could be caused by a number of things and that's been giving me random muscles cramps. Anyone else have this problem? Apparently high potassium can be really bad.
Let me know if you need anymore information on my treatment.

Best news I've heard since my DX.
-Kevin

[D.ap]

Kevin

It's great to hear from you.
What wonderful news on the shrinkage!
Are you keeping in touch with your regular doctor or your oncologist pertaining to your potassium levels?
Here are a few food to avoid:

fruits (specifically, avocados, apricots, bananas, dates, nectarines, oranges, raisins), vegetables (specifically artichokes, parsnips, spinach, tomatoes, yams), whole grains, molasses, clams, cod, halibut, yogurt, and nuts are consumed. Other causes include consuming too many potassium supplements.
How's your fluid intake going ? With a sore mouth, I am sure it is hard to get excited about drinking anything. The kidneys need all the help they can get in ridding your body of excess potassium.

Thanks for the update

Take care

Debbie

[cachabamba10]

Awesome news Kevin!!!!

Sincerely;

Mario

[Bonni Hess]

Happy 4th of July Kevin and thank you for your thoughtful update and the very good and encouraging news about your sacrum tumor shrinkage and stabilization of your lung and sternum mets Thank you too for sharing the information about your Pazopanib experience and side effects thus far which is so very helpful to everyone who is closely following this new drug and possibly considering treatment with it. The Pazopanib side effects sound very similar to Cediranib (with the exception of your hair turning white), as well as the other Tyrosine Kinase Inhibitors such as Sutent. Are you continuing to explore stereotactic radiosurgery for your sacrum tumor? I know that ASPS patient Jordanne was receiving XGEVA injections for her multiple bone mets, but unfortunately she suffered such severe post XGEVA injection bone pain that she ultimately had to discontinue the injections.
I will be anxiously awaiting your next update, and holding very tight to Hope for a continued successful response to the Pazopanib with more tumor shrinkage and continued stable disease. Have a wonderful and relaxing 4th of July, give yourself and Connie special hugs from us Hesses, take care, and keep in touch as you are able.
Sharing your good scan results with greatest happiness, healing wishes, and continued Hope,
Bonni

[Ivan]

I'm glad to here it's working. That pain.. not good, as I can imagine.

Is that sacrum tumor getting close to a size where it could be successfully treated? Perhaps it could shrink a bit more yet, and then it could be gotten rid of.

[D.ap]

Kevin

How's it going? Ivans suggestion may be well founded as I assume that the pressure from the sacrum tumor is the true source of the pain?
Here is hoping to a pain free day

Sincerely,

Debbie

[wangcns]

Hi all,

Sorry we've been somewhat absent, it's been pretty hectic for us lately, but in a good way. Kevin went back to work and the company where I work has gone on overdrive to push out a project, so we've been super busy. But it feels good to be busy with normal life stuff as opposed to cancer stuff

In July, Kevin was hospitalized because of the pain and numbness in his lower back and legs. They performed SBRT on his sacral tumor during his hospital stay and he was discharged after about a week. We've been sorta just hanging out while waiting for the inflammation to go down, since it wasn't possible to get a clear idea of what effect the SBRT had until most of the swelling went down. Kevin stopped the Pazo while he was in the hospital and resumed about a week after he got out of the hospital.

Kevin had an MRI done of his sacrum last week and we heard back from the doctors, so far positive news. Some shrinkage, but mostly they see stabilized disease, no additional extension into the spine, no growth in existing sacral mass, etc.

Kevin has been improving in strength and utility of his left leg (the one most affected by the compression of the nerves). From what I understand, nerve regeneration is slow so it will take some time for Kevin to recover but he's definitely been feeling better. SBRT frying the nerves in that area is also something that has to be taken into account. Pazopanib appears to still be working with a minimum of side effects - mouth sensitivity and occasional fatigue. He's completely off painkillers now and just takes neurontin, though he has to take synthetic thyroid hormones now as his levels have dropped.

Now we just need to worry about his lung mets and a possible ASPS met in his sternum. The sternum mass was biopsied and came back negative for ASPS but our oncologist suspects it's a false negative as they've seen some growth in that lesion. They've been talking about SBRT for the sternum lesion, not sure what that timetable is on that. Probably waiting to sort out the sacral tumor first. We've run into some insurance issues as well with the recent SBRT treatment. Insurance company insists we should have done conventional radiation first. Yay for ignorant sellout doctors on the boards of insurance companies.

Chest MRI is due at the end of this month (3 months from our last one), so we'll see how his lung mets have been doing on the Pazopanib then.

Stay strong everyone, hope you are all doing well.