Tom from Pennsylvania - Dx 2002, RIP 2021

[Kathy]

Bonnie,
Thank you so much for your message. It was so nice to wake up to. I know how hard you are all supporting Tom and it means the world to us. I have emailed the Doctor and let him now how eager we are to hear good news and if he could call us ASAP. Tom said he is not worried at all about the jaw, he says his concern is the L4. The pain just seems unbearable. I called Dr. Burton yesterday at UPMC (as well as emailed), but we have not heard back. The L4 is not set to be checked until December. We were really hoping that the pain would have gotten better by now.

We will be in touch, hugs and love and prayers to all of you!!

Kathy

[Bonni Hess]

Hello again dear Kathy,
I Hope that you will receive good news from Tom's scans as soon as they are available sometime today because the overnight or longer waiting for scan results is much too stressful, and it is unnecessary for the doctors/radiologists to put patients and families through it. At the University of Washington we always insist on meeting with Brittany's radiation oncologist to discuss the scan results and personally review the scans on the same day as her scans with the understanding that the results are only preliminary until we receive the official radiologist report a few days later, but it at least gives us some initial relief to know that there isn't any very obvious disease progression or new mets. In Canada, we have to wait until the next day because they are so busy that the radiologist is unable to have the results for us on the scan day, and typically most Canadian patients have to wait much longer and up to a couple of weeks for scan results as Olga and Ivan will confirm. However, because we are there from out of town and need the scan results before we leave in order for Brittany to receive her next allotment of Cediranib since if there is disease progression she would be taken off of the Trial, the radiologist and oncologist gratefully rush the scan review process for us.
I am so sorry about Tom's severe L4 pain and share his concern. I Hope that a spinal scan can be scheduled as soon as possible, and definitely before his currently scheduled December scan. Spinal pain is so debilitating and the cause of it needs to be determined and addressed immediately. In Brittany's case, her cervical and thoracic pain is chronic, very severe, and thus far heartbreakingly untreatable, and it is the result of her very major spinal surgery to remove her large spinal met which also removed a third of each of seven vertebrae. Tom's L4 pain could certainly be related to his stereotactic radiosurgery treatment, but it definitely needs to be evaluated.
Please feel the embrace of my caring hugs, my deepest caring, my most positive thoughts, my healing wishes for Tom, my love, and continued Hope dear Kathy,
Bonni

[Kathy]

Bonnie,
Thank you so much for your message. I was just getting on to post. Here is the message I received from the local oncologist (the one we are getting rid of):

I reviewed MRI of the neck done today morning, it does not show any new suspicious findings, no soft tissue mass noted in the neck region where he described the pain, no enlarged lymph nodes noted, no bony lesions noted, overall unremarkable findings.

So we are breathing a little easier with this news. We did also learn that Dr. Gerzten (UPMC radiation oncologist), wants to see Tom tomorrow morning at 8:30. We are leaving here at 5am. I spoke with the PA and she said a scan will be done tomorrow after we meet with the Doctor. I do appreciate that they are moving very quickly. They seem concerned. That also worries me and makes me thankful all at the same time.

I am so sorry to hear about Brittany's pain. Oh how I wish there was more we could do. I admire you. Your strength and faith, the support you give to everyone on here. I really do not know how we would cope without you. You, as well as all the other patients and parents and spouses on here, get it. I hate that you get it, because to get it means to live it, but I am so thankful we have you ALL!!

I will let you know how we make out tomorrow!

Hugs and love to you all,
Kathy

[Bonni Hess]

Hello again dear Kathy and thank you for your very prompt response, relieving news update, and kind words. I am SO deeply grateful for the GOOD NEWS!! results of Tom's neck MRI today ( did the neck MRI also include the jaw which is where I thought that Tom's pain was?) and for the oncologist so quickly contacting you with the good results . I love the "overall unremarkable findings" summary which is truly the best news there could be . I am also very grateful that Dr. Gertzen was so responsive in scheduling an appointment and scan for Tom tomorrow, and I share your mixed feelings of worry and gratitude that Dr. Gertzen and his PA are acting so quickly because they seem concerned. I am so sorry for the emotional roller coaster of worry and stress that you are on with back to back scans, concerns, and scanxiety, and unfortunately I and all of us on this Board do know and understand far too well what you are going through, but since we do, I too am deeply grateful that we all have each other to provide strengthening support, encouragement, and special caring on this very difficult journey which we all heartbreakingly share as an ASPS Family.
Reaching out to share the great relief of Tom's today's good scan results with much joy and happy hugs , and sending more postive thoughts, best wishes, love, and continued Hope across the miles for tomorrow's spinal scans,
Bonni

[D.ap]

Hi Kathy and Tom
It is great news of unremarkedable notations
My question is what scan is being performed in the morning on Toms spine?
The area of concern was treated with SBRT at some point ? Synergy? A combination of treatments ? I was courious to :
1) Bone density ie weakened maybe microscopic fracture?
2) a biprodic or surgery infection as a result of the recent surgery of the intestines?
Was radiation performed after surgery?

All of our love and prayers ,to safe travels , to you both and prayers for the procedures tomorrow and always.
Love
Debbie and family

[Kathy]

So we met with Dr. Gerzten Friday. They were very concerned about the pain Tom is in and they immediately sent him for an mri. They said the imagine was not too different from the planning one they did in August. They did note swelling and feel that is where the added pain is coming from. It is pressing right on nerves now. they have no idea of knowing how long it will take the swelling to go down. They wanted to do surgery and get the tumor out and relieve the pressure on the nerves, but Tom does not want this. The idea of back surgery has him very worried as we were once told by another surgeon that he would be trading leg pain for back pain. Dr. Gerzten agreed to wait 2 weeks and evaluate where the pain is. So it looks like we head back down in a few weeks.

[D.ap]

Debbie, Thank you so much for your note. It means so much. I do have an update as we just got back from UMPC last night. We first met with a surgeon regarding the spot on the bowel. There is obvious concern and they feel need for surgery. They went ahead and scheduled it for Monday the 25th. We will be getting a call today to schedule a balloon endoscopy. They want to attempt to get a closer look before surgery, although they prepared us that this is a very difficult area to get to. Our understanding is that they will find one of three things. 1. they will confirm sarcoma. 2. the endoscopy will be inconclusive. with either of the scenarios, surgery will continue. The 3rd thing they said they could find is lymphoma. There is an obvious concern regarding the amount of radiation TJ has received. If this is the case surgery will not happen and they mentioned chemo, but we had lots of questions regarding that. We will definitely be researching but also taking one day at a time.
As for the l4. it was treated again with radiosurgery yesterday so now we wait. They gave TJ meds as the pain most likely will increase before it gets better.
As soon as we get the results to the endoscopy, I will post.

much love and many hugs and prayers to you all,
Kathy

Hi Kathy and Tom
I am so sorry to hear of Toms back pain and I am hopeful that it proves to be able to be treated soon to aid in a no pain situation
It's been alittle over 8 weeks since radio surgery . Is the tumor visable through the swellng?
Has it reduced in size ?
Good to hear from you
Love
Debbie

[D.ap]

Kathy

What is the spine tumor being classified as?
An exterior or interior tumor ?
And as I asked earlier. How big?
Another nosey question.
How's the intestional surgery healing ?
That was a major surgery performed away from the spine ?
Love
Debbie

[Bonni Hess]

Dear Kathy,
As always, your thoughtful update is deeply appreciated as Tom and you have been so very much in my thoughts knowing that he had his appointment with Dr. Gerzten on Friday. I am grateful that the MRI did not show any significant L4 tumor growth from the August scan, but am sorry that there is swelling which is putting pressure on the nerves and causing Tom's pain. Do the doctors feel that the swelling is caused by the radiosurgery, and is there anything other than resection of the tumor which could help alleviate and resolve the pain? Is it possible to use steroids to help reduce the swelling as is done with brain tumor swelling? Hopefully the swelling will dissipate and disappear without surgery, but in the meantime there needs to be a resolution for Tom's pain which I Hope is being controlled with effective pain meds. It is of course best to avoid any spinal surgery if possible, but if the tumor is not shrinking from the radiosurgery treatment and there is continued swelling, and if it can be safely resected without post-op debilitating side effects and pain then surgery may be the only option. I know that the coming two weeks will be a difficult period of waiting and Hoping for the swelling and pain to subside so that surgery won't be necessary, and my most positive thoughts and very best wishes will be with Tom and you. Take care dear Kathy and please give yourself and Tom special hugs from me.
With deepest caring, healing wishes for dear Tom, much love, and continued Hope,
Bonni

[D.ap]

Hi Kathy
I was ultimately worried about Toms Intestinal surgery and healing?
As I understand it steroids can cause a slow down in healing ?
There are no tubes for drainage and all is clear from infection?


Love
Debbie

[Kathy]

Hello Everyone,
I hope this update finds you all well. We are feeling especially thankful as things are starting to look brighter. Tom has had a few rough months. I think I last wrote regarding increased leg and hip pain Tom was having. We were told in the start of December that they were fearful the L4 looked bigger and that 2 lung mets had grown. We were worried as the topic of back surgery had once again presented itself. We are happy to report that we went to Pittsburgh on Friday and Dr. Gerszten feels the tumor has shrunk a bit and that they feel it is dead. The are however concerned about the pain. They suggested surgery to "clean up" the nerve roots and remove the part of the tumor that is causing the added pain. TJ has opted (and Gerszten approves) to wait and see if the pain gets better on its own by the tumor hopefully continuing to shrink. They will recheck the area in 3 months.

We also received the great news that the brain tumor responded to treatment - it is smaller and they feel it is also dead. Nothing new showed up. Tests also showed that the bowel looks really good and all of Tom's blood work looks great as well. There is finally no more anemia and he worked out for the first time this past weekend. I know the pain is still an issue but we are hopeful that will get better with time.

As for the 2 lung mets that grew. Dr. Tawbi (the new oncologist) was going to consult with Dr. Burton who has treated several of Tom's previous lung mets with radiosurgery, but he feels they are even too small to treat.

We hope everyone on the board is doing well and we send much love to you all,
Kathy

[Olga]

Hi Kathy,
thank you for a detailed update, and some good news this board could always use.
Re. brain tumor - are you referring to a scalp tumor? Was there a definite brain extension?
Re. lung mets - do not overuse the radiosurgery. I would only use it in the locations that are not accessible with cryoablation - in the apexes ets. There could be radiation induced damage to surrounding lung tissue (pulmonary fibrosis) and on the skin surface - some scattered dose of the radiation is always delivered not only to an area close located to a targeted met but also to the organs in the area. If you might missed it, Dr.Littrup moved to Rhode Island hospital, Providence and you can consult him later. For the cryoablation the optimal treatment size is about 10 mm.

[D.ap]

Tom and Kathy
So very glad to hear of the incrediably good news today !
Thanks for including us in the loop of uplifting news
Love
Debbie
I

[Kathy]

Hello Everyone,
It has been a bit since I have posted. We have been in a holding pattern here. Pain being the biggest issue for Tom, although he never lets it stop him from living. We had a call from his oncologist Tuesday night and it seems the L3 vertebrae is broken and the cancer has spread from the L4 to the L3. We meet with a surgeon in Pittsburgh on Monday. As for the rest of his results - there are a few tiny lung mets but the rest of the body looks good.

I will post an update after Monday.
As always you all are in our daily prayers.
kathy

[D.ap]

Kathy and Tom

We are so sorry to hear of the spread.
That seems to be the other factor besides the fractured vertebra that has been causing Toms pain, huh.
You have the best team there in Pennsylvania and I feel confident that you will get the answers soon that you need.

What size are the doctors setting ?
Hugs to you, Tom and family

Love and prayers
Debbie and family