Tom from Pennsylvania - Dx 2002, RIP 2021

[Olga]

Hi Kathy. I would not go this route. If the tumor grew on TKI, it might be to late for any trial or surgery. Have you looked for the similar trial somewhere with no biopsy requirement? Also you can talk to your oncologist re. people elsewhere getting Keytruda off label prescribed, Lynette is offering Geogre's scans and oncologist contact info to anyone who is trying to get it off label, Ivan is now in the contact with her trying to organize this info to share with the oncologists. Keytruda is approved in US for other indications but if the oncologist has reason to believe it could be beneficial for his patient, he can prescr. this drug for other indications - and the insurance should pay for it. Also there is some patient's assistance program, you find it on the internet. But it is hard to get trough and has to be broken into. Other than that I suggest to look for the surgery, even if debulk, and get the tissue and to decompress the tumor to relieve the pain - talk to your surgeon again, explain about the trial and that Tom needs tissue from there. Or the biopsy has to be done only in Miami? Would they accept the tissue taken elsewhere? I have few images of the scans Lynette sent me, what is your e-mail address I can sent it to you and you share with the oncologist ask if it might work for off label prescr. then we organize full scan file to share.
What size are the lung mets? Don't they meet the criteria for the trial?

[Jorge]

Hi Kathy,

TKI is not the final solution of this disease, according to most patients using it. But if there is no other way right now, Votrient may be a better choice. From my observation of a few Chinese patients, Votrient works better on the bone and soft part mets than other TKI like Cediranib; while Cediranib works better in lung than other TKI. The pain of one patient who has mets on thoracic vertebra, goes away 7 days after taking Votrient.

If Tom is in sereve pain, you can consider this. But in the long run, some other treatments like Olga recommended till should be persued.

Best Regards,
Lynette

[Kathy]

Thank you all for your advice. I am trying really hard to stay strong and focused but I feel like I am falling apart. I honestly do not know what to do next or what method to pursue. I do not feel as though I am doing a good enough job for Tom and it is scary. I emailed his oncologist everything that Olga suggested, but we have not heard back yet. Dr. Burgess is definitely for the Votrient. Should we try it and if it doesn't work try to get the Keytruda? Thoughts? We are so thankful for each and every one of you and so sorry that this is what brings us together.

[Kathy]

Lynette,
So you know of patients with bone mets like Tom's stubborn L4 area that have had success and pain reduction? The pain is really bad.

xoxo
Kathy

[Kathy]

Thank you Debbie, Happy Mother's Day to you as well. This L4 issue of bone involvement has been an issue for years. We have been told so many different opinions. The surgeon did tell us after surgery that there was not bone involved, but we are now being told by several of his doctors now that there is. We have requested a meeting with his oncologist to be moved up. We were not scheduled to go down to see her until the end of June. We need to decide if he is going to try the votrient or try for the keytruda or Dr. Wilky in Miami suggested Opdivo?

I hope you were able to enjoy today,
Kathy

[Jorge]

Yes, Kathy.
The patient has several bone mets, one on T7 and T8 which caused him a lot of pain After taking Votrient, his pain disappear a few days later.
Votrient is a very good "pain killer" for patients with bone met. We have a big group of over 200 ASPS patients (with dozens of active users), there are many cases of bone pain relieved by Votrient.
If Tom is allowed to use Votrient prior to Keytruda, that's the best choice. As the PD-1 antibody works very slow to shrink the tumor, that I'm afraid it can't relieve Tom's pain in the short term...

Lynette,
So you know of patients with bone mets like Tom's stubborn L4 area that have had success and pain reduction? The pain is really bad.

xoxo
Kathy

[Olga]

Lynette, thank you for the information about Votrient (pazopanib) being active in bone mets location. It is amazing wealth of information we could get from this large Chinese ASPS patients group. May be we can do something about it, like open the Chinese group topic in the anonymous patients area and you would post there anything that worth mentioning, so it is not lost.

Do you know if the response was detected on the scans - have the bone mets shrunk visibly on the scans? How long did they respond - was the rebound growth detected after the initial response or it is still ongoing, for how long?

[Kathy]

Thank you Lynette,
We really appreciate your advice. We are waiting to hear back from Dr. Burgess (Tom's oncologist). We are going to meet with her and get a plan going. I am really thankful to read your positive remarks about Votrient. We will post when we know more, but at least now we feel better informed.

You are all simply a gift to us.

Kathy

[Bonni Hess]

Dear Kathy, My heart is breaking for all of dear Tom's spinal tumor pain and suffering, and for all of your worry and anguish . I too am grateful for the shared information and support from Board members, and Hope that the information that dear Lynette thoughtfully shared about Votrient will be beneficial in obtaining treatment and spinal pain relief for dear Tom. Take care dear Kathy, stay strong, and feel the embrace of my deepest caring, special hugs, love, and continued Hope, Bonni

[Kathy]

Thank you Bonnie, your kind words always mean a lot to us. Tom has decided to move forward with the Votrient. His father is treating him to a fishing trip in Alaska next week, so once he returns he will start the medication. We are really hopeful it will help with the pain and will stabilize everything until we find something else. We continue to research as all of us here do. His oncologist knows that we want to pursue Keytruda but she does not feel this drug alone will be the answer we are looking for. I hate that there are no clear beneficial options.
As always, every single one of you are in our thoughts and prayers.
Kathy

[Olga]

Kathy, thank you for an update. Have you managed to get a second/third surgical opinion from some advanced spine surgeons from the places like MSK or MDACC? Because Tom is only having a local progression in one spot, it really makes sense to keep looking for the local treatment options.

[Kathy]

Good morning everyone,
We are currently trying to get scans and records sent to Sloan Kettering for another opinion from their surgical team. I am frustrated with how slow this process has been going. Consent and requests were signed weeks ago and as of yesterday, MSK had not received anything. So today I will call around again, trying to find out why nothing has been sent. In the meantime, Tom started Votrient last Thursday. He is on 800mg a night. The first few days were fine. We camped and although he felt fatigued on Sunday, all was well. On Monday he started to complain of a headache. By Tuesday I could tell he was fighting like mad to not admit he wasn't feeling well. Yesterday he came home from work and went right to bed. Chills, constipation, both legs felt like there were tons of weight on them, headaches, and of course fatigue. He did not take his dose last night. He did seem better this morning and is on his way to a friend's funeral. I have a call in to his oncologist. I have read that several patients bump down for the 800mg. I am eager to hear what they say and to also see the results of the bloodwork he had on Tuesday. We will keep everyone posted.

[Olga]

Kathy - may be you should first try to resolve his constipation by the conventional methods. Few days of it can produce the headache and heavy legs by compressing the veins, initially he might even need to flush the system from the other end at the place like colon hydrotherapy spa, but ask them to reduce the water volume not to press on the tumor from the inside to much. Is he taking any strong pain killers now? They are usually the reason for the constipation too.

[Kathy]

Tom is off the votrient for the time being and has been since last Wednesday. Flu like symptoms knocked him down. Due to the terrible headaches and stomach issues, tests are being scheduled as I type. Constipation issues seem to be resolving a bit, but back and leg pain have increased again. Headaches are also not as bad as they were last week. Once we see what the ct scan and mri show, they will decide if he is going back on the votrient and at what dosage. We are hoping to hear from Sloan Kettering today as they should have everything that they need.

We will post as we learn more

[Bonni Hess]

Dear Kathy,
Thank you for your very thoughtful update in the midst of all of your new concerns and challenges with dear Tom's courageous battle. I am so deeply sorry for his increased pain and suffering and Hope that a speedy and successful resolution and relief for him can be found soon following his new scans. Please know that both of you and your family are being held very close in my heart, and that my most caring and positive thoughts are with all of you.
Reaching out to embrace you with special hugs, and sharing your concern and heartache with deepest caring, healing wishes, all my love, and continued Hope,
Bonni