Tom from Pennsylvania - Dx 2002, RIP 2021

[Ivan]

Yeah, that's not a good attitude for the oncologist to have. Tom and myself are aiming to live out a normal healthy lifespan - no less.

The only thing I would suggest is to maybe slow down the lung intervals to 6-9 months, unless it's a specific follow up for a procedure or something suspicious is going on warranting a closer interval. In 3 months the changes are so small that it would be hard to track them, even if things are growing. It's also very important to make sure that the radiologist is comparing the scans not only to the previous one, but also going further back.

It's happened to me where a report noted that "largest nodule is 8mm" and then I had a few scans which were pronounced to be stable and the next report noted "small interval increase, largest nodule 15mm". Yeah, since then I read my own scans. Radiologists and stupid guidelines which do not apply to us kill ASPS and other slow growing tumor patients -> FACT.

[Amanda]

Hi
I agree with Ivan at the 6 to 9 months...

An if your Onc is supporting your treatment or thoughts then lets find you a Onc that will!

The Onc Ivan is using sounds wonderful an I have even spoken with my lung surgeon about him an he said nice things about him...

[Jorge]

We were just given the news that the brain looks great! I think we will take our 3 beautiful children out to dinner to celebrate! Praise God!

hugs,
Kathy

What a great news! I'm so glad for your family.
I wish you will keep on updating us good news like that

[D.ap]

We were just given the news that the brain looks great! I think we will take our 3 beautiful children out to dinner to celebrate! Praise God!

hugs,
Kathy

Kathy and Tom
Can't believe I missed this good news
Wow! Very wonderful news!
Thanks for sharing
Love
Debbie

[Kathy]

I am hoping you can assist us with our latest chain of events. Tom has been feeling very fatigued and had several episodes of terrible night sweats that soaked the bed. On Wednesday he went to his Oncologist and they did blood work and started the process of scheduling a CT Scan. On Friday that called and said they wanted to run more blood work. They have found Tom to be very anemic. On Tuesday Tom had an endoscopy done and everything looked good. Today he had a colonoscopy done and that too "looked great". His CT of his lungs, pelvic and abdominal region is scheduled for Monday.
As you can imagine we are very worried. Is there anything else this could be? We are terrified that cancer has spread or grown - we are eager to hear your opinions and advice.

[D.ap]

Hello Kathy and Tom and family

It's been over 11 years since Tom's DX..
Would it be OK to ask you of a summary of Tom's history?

I am so sorry that this has hit you so suddenly. The anemia.

What are the doctors thinking?

This damn cancer as Olga calls it..

Share what you feel comfortable

Sincerely

Debbie and family

[D.ap]

ps
Recent scans
Bone scans?

[Kathy]

/thank you for your quick response to my post;) All of his scans in September were stable. He really has felt well and has been very active since his surgeries in Germany. He still works full time and works out daily (although with his fatigue this has not been as often). The Oncologist wanted to rule things out - I really thought they would find an ulcer. I am guessing we will learn more after the CT scan on Monday.

[Kathy]

Debbie, When I say scans were stable - they did not do a bone scan. We were actually just saying that it has been a long time since his last bone scan. I am thinking that will be in his near future. As you know, it the waiting and not knowing is so hard.

[D.ap]

The waiting and wondering are so hard. You are so right
Keep the faith Kathy.
If there is not an ulcer maybe pursue the bone scan as Tom had a bone related tumor on his spine, correct ?
I bet others will have something to contribute as time allows

Love
Debbie

[Olga]

Kathy, this is a worrisome symptom for sure. I looked for the common causes of the anemia here:
https://www.nhlbi.nih.gov/health/health ... auses.html
so I guess all the common suspects have to be ruled out first:
- if the hormone erythropoietin is on a proper level, it is produced by the kidneys and liver so he would need to have all of them checked - I remember a case of the ASPS met to a kidney, ASPS met to liver as even more common...
- if the spleen looks normal (CT scan or better MRI...);
- If the bone marrow is damaged, it can't make red blood cells fast enough - could occult bone met cause that? In humans, red blood cells are produced in the heads of long bones so these have to be checked (bone scan?).
- patients with the hypothyroid state had significant reduction in red cells production - was thyroid level incl. in the blood works?
but I guess his oncologist knows that and is already doing that, so you just have to facilitate the process and point out to the oncologist that kidneys, liver, thyroid, adrenal and bones are known metastatic sites in ASPS.

[Kathy]

I will Olga, I am terrified, so terrified. I will let everyone know how Monday goes. I told Tom that I wished you were here with us.
hugs to you all,
Kathy

[D.ap]

We are all there in spirit Kathy and Tom.
Much love and hugs
Debbie and family

[D.ap]

Kathy

Does Toms family have a history of thyroid --low thyroid ?
Even if answer is no the normal blood work ordered a lot of times won't show thyroid disease
Talk to doctor about more sensitive blood work


FYI
Debbie

[Olga]

Kathy - few more comments.
-Some people have less than normal quantity of hemoglobin in the blood as their own specifics and live fine with it. Do you have other (earlier) Tom's blood work tests for a reference? Do you know what exactly his current red cells count is? You might need to request his blood work info from the places where he was treated for a few times like that radiosurgery department to see the dynamics, if you do not have them on hands.

- Do not jump into any anemia drugs because newer studies suggest that they may cause cancer growth and shorten life in some people, they should be only used when absolutely necessary in cancer patients. It is also usually more important to fix an underlying cause than to treat the symptom.