Tom from Pennsylvania - Dx 2002, RIP 2021

[Jorge]

Hi Kathy,
How is Tom doing now? Is his pain less? We're thinking of you.
I'm sorry votrient didn't relieve Tom's pain like the cases I said...

Best wishes,
Lynette

[Kathy]

Hi Lynette,
Thank you for reaching out. Tom is doing much better on the 1/2 dose. He still had high blood pressure so they have him on meds for that. His blood work has been good so far. His latest was yesterday so we are waiting to hear the results. His most recent MRI of the back showed the tumor was smaller. We are still waiting for copies of the report to compare to the one done in March to see what the actual size difference is. We are also still waiting to hear from New York. They said this would be the week they would call. They have been waiting for a certain radiologist to return from vacation. All of his other scans showed the lung mets and the brain were stable and nothing new has shown up.

Tom continues to work full time and other than occasional nausea and some fatigue, he is doing really well. The pain seems to be the same, but the thrill of knowing that the tumor is smaller helps make it more tolerable.

How is George doing? How are you?
Wishing you all the best, always,
Kathy

[Jorge]

Great news! With the vertebra met shrink, I hope Tom's pain will relieve and disappear soon.
Thanks for asking. I'm good. George is also doing very well. He went back to work in May after resting at home for 1.5 year.

It's a weird Tom's blood pressure is still high on 1/2 dosage. What does the doctor say?
When George had kidney mets, his low pressure was a little higher than 90 when he was not on any TKI. A proportion of Renal Cancer patients are found to have high blood pressure. So I thought George's high blood pressure could have been caused by his kidney mets.
Maybe you can talk to the doctor to see if an MRI is needed for that area?

Best wishes,
Lynette

[Kathy]

Hi Everyone,
TJ had a check up with his oncologist yesterday. They are going to increase his dose of votrient to 600mg because he is tolerating the 400mg so well. Scans will take place in a month. His blood pressure and blood work were all good. He continues to amaze me at his strength and faith. I am one lucky lady.
Blessings to you all,
Kathy

[Kathy]

I should add that we have had no luck with Sloan Kettering. They said that they could not operate and had not other options at this point but to keep in touch. This was certainly not the news we were hoping for. Tom's oncologist is reaching back out to them to get a more detailed explanation then the receptionist gave me on the phone.

[Bonni Hess]

Dear Kathy, I am so happy that Tom's blood pressure and blood work looked good at his most recent oncologist appointment on Tuesday and that he is now tolerating his Votrient well enough to try an increased dosage . I share your frustration and disappointment with Sloan Kettering which is something that I know very well from previous uncooperative dealings with them several years ago when they abruptly and inexplicably discontinued promised development of a promising ASPS immunotherapy vaccine after accepting a substantial amount of our donated research money for the vaccine's development, and then rudely refusing to ever provide any explanation or information to us about cancellation of development of the vaccine and initiation of the anxiously awaited and repeatedly delayed promised Clinical Trial. On a much more positive note, I too share your great admiration for dear Tom and his incredible courage and perseverance in fighting his disease, and his ability to continue to work and move forward with his Life despite all of his challenges and pain. He is truly an inspiration, as are you with all of the faithful care, support, and love that you have lovingly provided for him throughout his difficult 14 year ASPS journey. Take care dear Kathy. With special caring thoughts, healing wishes, much love, and continued Hope, Bonni

[Kathy]

Hi Everyone,
It has been a while since I have updated you all on how Tom is doing. We don't have a lot of details as we have not read the reports, but we are being told the Votrient is not working. There is increase in the L4 and small increase in a few lung mets and a new spot showing "2.2 cm soft tissue in left lower quadrant of the abdomen". We are getting the written reports on Monday for the recent pet scan and the Mri's. We are also meeting with his oncologist Tuesday. We will post when we know more.

prayers to you all, always,
Kathy

[D.ap]

Great news! With the vertebra met shrink, I hope Tom's pain will relieve and disappear soon.
Thanks for asking. I'm good. George is also doing very well. He went back to work in May after resting at home for 1.5 year.

It's a weird Tom's blood pressure is still high on 1/2 dosage. What does the doctor say?
When George had kidney mets, his low pressure was a little higher than 90 when he was not on any TKI. A proportion of Renal Cancer patients are found to have high blood pressure. So I thought George's high blood pressure could have been caused by his kidney mets.
Maybe you can talk to the doctor to see if an MRI is needed for that area?

Best wishes,
Lynette

Hi Kathy

The above is from an August post by Lynette
I was wondering how often Tom was having lower pelvic scans performed ? As Lynette spoke of in the above post ,she found George to have a higher BP when he had kidney tumors

I'm sorry that you both are having to move to another med
I'd be interested to hear what the PET scan report says as it can give light to the votrients effectiveness on maybe some of the tumors ?
Your last pelvic scan hadn't shown any lower left image ?
Maybe it was a CT?


If I can ask , what blood pressure med was Tom taking

Write when you can

Much love and prayers to you and Tom and family

[Bonni Hess]

Dear Kathy,
I am so sorry that Tom's most recent scans show that the Votrient is apparently not working to stabilize the progression of his disease, and my heart breaks for the stress and uncertainty that you are going through this weekend as you are waiting to receive and review the written radiologist reports tomorrow, and the oncologist appointment to discuss the scan results on Tuesday. I Hope that the suspected 2.2 Cm. abdominal lesion will prove to be a benign growth, and if not, that it is easily resectable or ablatable. Once the lesion is addressed and treated/resolved, then Tom can Hopefully move forward with a new systemic treatment, perhaps one of the promising new PDL-1 immunotherapy treatments such as Keytruda which seem to be showing encouraging success for some of our ASPS Community patients who participate on this Board. In the meantime, I Hope that you have been able to try to enjoy some worry diverting festive Holiday activities with Tom and your dear family, and that you are all staying warm in this frigid Arctic blast that is gripping so much of the country. Take care dear Kathy and keep in touch as you are able.
Reaching out to embrace you with warm hugs, special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[Kathy]

Hello Everyone,
We are eager to hear your opinions and advice on the latest with Tom. He has been taken off the Votrient. He never felt good on it so although it did not work, we are trying to remember the comments of our youngest when she found out. "Oh phew, now we can find something that works and doesn't make Daddy feel bad".

Since my last post, we have learned that the lesion in the abdomen is near but not involving the bowel. It can been seen on scans from 2 years ago, although noone ever mentioned it in a report or to us. It has grown 1cm in the past 2 years. We consulted with a surgeon (He removed Tom's primary tumor and his partner did the bowel). He did not feel surgery was needed at this time because the tumor is not causing any pain or symptoms. He did say if we want it out, he will take it. He felt leaving it in gives measurable disease for either Miami or an upcoming trial at UPMC. The trial at UPMC is slated to start in about 6 months. It is going to be run through the National Cancer Institute and UPMC will be an active site. It is using Atezolizumab (PD-L1 inhibitor). I do not have any more information yet.

The small brain lesion was treated by Dr. Burton at UPMC last Thursday. They will scan his brain in 3 months to see how things look. I am know terrified of every headache he has.

A CT scan has been ordered to get a better look at the lungs. I will post as soon as we have results for that. As for the L4, that is an issue and always has been. We are told it cannot have any more radiation and Dr. Gerzten feels the recent mri "doesn't look that different". I can tell you that Tom's pain has increased and now goes into his foot, not just the leg and back. Anyone have advice on any suregeons we could contact? Sloan Kettering was of no help. It seems the more active he is, the worse the pain. This is so difficult as Tom loves to work out.

I know I don't post often but we think of you all every single day. You are all in our prayers and in our hearts. I have no idea how we would get through all of this without your knowledge and help.

Love to you all,
Kathy

[D.ap]

Hi Kathy

I've been following your story when able. The tumor in the stomach area, in my opinion, should be removed. With Toms lung and spinal tumors, the trial folks will have plenty of targets to follow . I believe the trials sometimes have restrictions on coming and going and the patience options for surgery. That question needs to be considered as well as whether you want to wait to perform surgery. You oncologist should be able to help facilitate that on your behalf.

You both are always in our thoughts

Love
Debbie

[Olga]

Hi Kathy,
thank you for the report.
In order to decide what to do you need to answer few questions.
1. Abdominal tumor location. It is good that this tumor is not located in the organs itself. Is it close to anything? Is it superficial - close to the surface - or located deep. Would it be the big abdominal surgery to remove it or an easy one?

2. Are there any other mets that can be used for the trial if needed (wait for the lung CT results). (The spine met - it is considered the bone met and also it was per-treated that mush so it did not qualified as a measurable target?). If the abdominal met is not needed for the trial or if Tom is not going soon, I would agree with Deb - it is growing and I would not keep it, it also has some immuno supressive effect.

3. Does Tom need to go for the trial soon? It probably depends on the spine situation that needs to be investigated further. If the lung mets are relatively stable or can be cryoablated, the brain met treated and (assuming) the abdominal met resected, the big problem left is the spine met. If Dr.Gerzten feels the spine tumor does not look different, then may be the symptoms are caused by the damage to nerves that already done by now by the tumor itself or by the radiation and surgery plus the procedure he had to fuse the vertebrae and to fix the fracture (did he have a kyphoplasty or vertebroplasty? there are side effects). If the pain causing effects are not result of the tumor pressure, the chances are the trial will not help? You really need to find some advanced and caring spine surgeon who would review all the situation with the spine - all treatments done up to date, symptoms and scans and give you the recommendation what it could all mean and if the surgery can be done and could bring the resolution of the symptoms or there is a mass of the live ASPS tumor that could be a reason so the trial is needed. Unfortunately I do not have any spine doc suggestions, you need to identify and contact a few of the very advanced ones (that could be also in your insurance network?).

Try to find an answer to these questions.
Deb shared a very alarming article with me today that there are very alarming acute side effects increasingly noted in the immunotherapy trails - in some patients the drugs stimulate the immune system that much that it attacks the patient's organs with the cases of the acute diabetes caused by the pancreas failure, lungs and heart failure etc. So once again - the clinical trials have to be reserved for the situations when there are no other tools left. Besides if Tom symptoms are treatment related it could not even help.

[Bonni Hess]

Dear Kathy,
Now that Tom has discontinued taking the Pazopanib and is no longer suffering from the negative side effects of the drug, I Hope that he is feeling better, but my heart breaks for his continued and increasing spinal met related pain and symptoms. I think that Dr. Gertzen's assessment that the recent spinal MRI "doesn't look that different" is inadequate and you need to obtain a copy of the radiologist report and specific information regarding the current size of the spinal met compared with previous scans. I feel that you should definitely pursue obtaining a second opinion from another oncological surgeon especially since Tom's pain and symptoms are increasing. I strongly agree with Olga and Debbie regarding the need to address and treat the abdominal lesion near Tom's bowel. I find it inexcusable and inexplicable that the lesion was seen on the scans two years ago but was never mentioned to you!! Although it is thankfully apparently relatively slow growing having only grown one centimeter in the past two years, your previous post in December said that it is 2.2 Centimeter which I think is too large to not address and treat as soon as possible. I absolutely don't understand nor agree with the attitude of the surgeon saying "He did not feel surgery was needed at this time because the tumor is not causing any pain or symptoms." YOU DO NOT WANT TO WAIT FOR THE TUMOR TO BECOME SYMPTOMATIC!! because if it is symptomatic it may be too large to successfully treat with ablation or radiosurgery, or to safely resect!! The "wait and see what happens" approach that too many negligent/naiive/non pro-active doctors take with ASPS is extremely frustrating and impossible for me to understand, and can put the patient at risk of not being able to have a suspected met successfully treated or removed!!
You mentioned that Tom underwent treatment last Thursday for a small brain met that I was not aware that he had been diagnosed with. Was the brain met found through a regularly scheduled brain MRI or as a result of symptoms, when was Tom diagnosed with the brain met, what size was it, where was it located, and what type of treatment was used for it? Did he tolerate the treatment procedure well, and has he had any post treatment side effects?With Brittany's history of brain mets, I know FAR too well how very concerning every headache and related symptoms of nausea, dizziness, balance problems, extremity numbness, vision disturbances, etc. can be, but the only thing that we can do is remain very aware of any new symptoms and vigilant with having frequent brain MRI's to ensure that any new mets are found and treated at the smallest possible size.
My very best wishes are with you for good results on Tom's upcoming lung CT scans, and I will be anxiously awaiting your update when your time and the situation allow.
The PDL-1 Immunotherapy Trials sound very promising as a new systemic treatment to try to stabilize the progression of Tom's disease and shrink/destroy his spinal and lung mets, as well as the abdominal met (if it is not treated or resected prior to beginning a new systemic treatment). However, the very alarming and critically important information which Debbie alerted Olga to and which Olga has posted regarding the possible acute dangerous side effects of the new Immunotherapy Trials is certainly something which will need to be addressed, researched, discussed, and seriously considered prior to beginning any Immunotherapy treatment.
I agree with Olga that there are several questions which you and Tom need to find answers for in making your new treatment plans, so Hopefully this can be done as soon as possible so that you can make the most informed treatment decisions possible.
Take care dear Kathy, give yourself and Tom special hugs from me, and know that both of you and your dear family are always held very close in my heart and my most caring thoughts.
Heart to heart with special caring, healing wishes, love, and continued Hope,
Bonni

[Deborah]

Kathy,
Our son had an L5 tumor which was treated with radiation (see 15 year old from Denver). Apparently, a lot of his pain was caused by the compression of the vertebra which our doctor treated with Kyphoplasty. The cement filled the void that was created by the radiated tumor. It has been a year and he does not experience any back pain now.

Deb

[Jorge]

Kathy,
I've been follow Tom's case for a while and am very concerned about the spinal met. I'm sorry Pazopanib unfortunately doesn't help much with Tom and the spinal pain is not alleviated.
Tom overall situation is not bad; the mets are relatively limited spreaded and very treatable--the brain met is treated and the abdominal &lung tumor are not symptomatic and treatable in some way. This leaves the Spinal met the biggest concern as it has been for the past 2 years. I would think about Olga's questions and find a best way to treat this one first.
I learn Proton beam radiation therapy has much less harm to the surrounding tissues and it's available in US. Maybe you can ask Dr. Gertzen if Tom can have it to the spinal met?