Tom from Pennsylvania - Dx 2002, RIP 2021

[D.ap]

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.
Olga Admin Posts: 1026Joined: Mon Jun 26, 2006 11:46 pmLocation: Vancouver, Canada

Amen to that Olga

[Ivan]

Wishing Tom best of luck for a quick resolution of this issue.

[Bonni Hess]

Dear Kathy,
I am so sorry about this new concern, but am very Hopeful that it is from a benign cause, unrelated to ASPS, and easily treatable and resolvable. I am grateful for all of the shared input, information, and support from some of the Board members which demonstrates the critical importance and value of this forum and our ASPS Community. My very best wishes and most positive thoughts will be there with Tom and you on Monday, and I will be anxiously awaiting your update on the results of Tom's scans when your time and the situation allow.
With special hugs, deepest caring, healing wishes for Tom, warm friendship, and continued Hope,
Bonni

[Kathy]

Here is where we stand.
The ct scan shows that the lung mets are stable. There is nothing new showing up and the few mets they are following have not grown. They do not feel that a bone scan is necessary. They are suggesting a capsule endoscopy to further evaluate the anemia.
Kidney and Liver function both were normal in the blood work.
Any thoughts or advice?
xoxo
Kathy

[Olga]

Kathy, congrats on the good CT scan! Thanks to Dr.Rolle, at least this area is under control.
On other steps -if there is some occult met that causes the anemia, it should be pretty large and metabolically active. May be Tom can have a PET scan - ASPS mets are usually not seen on the PET scan when small, but they are indeed seen very well when they are significant. Also - did they check thyroid? And they should schedule the bone scan anyways at least once a year regardless of this situation.

[D.ap]

Kathy and Tom

I bet you are glad the ct is behind you ! So are we
Thanks for the update
Let us know about the next part of your journey when it is convenient
Holding out for an ulcer or thyroid diagnosis

Love
Debbie

[Bonni Hess]

Dear Kathy,
Thank you for so promptly posting this very good, relieving, and encouraging news I know that you still need to find a definitive cause for Tom's anemia and fatigue and am wondering if his thyroid function has been evaluated. Brittany has experienced both hyperthyroidism (high thyroid) as a result of her long term high dose steroid treatment when she had her brain mets, and hyperthyroidism (low thyroid) which is a side effect of her Cediranib. Both thyroid conditions caused severe night sweats (in addition to several other debilitating symptoms) like you described that Tom has been experiencing. The thyroid controls many functions of the body and if the levels are either too high or too low it can impact a person both physically and emotionally. Hypothyroidism can be controlled with thyroid medication, but hyperthroidism may require other treatment such as burning the thyroid which was recommended for Brittany, but we declined due to the irreversible nature of that procedure. Thankfully, her elevated thyroid levels ultimately resolved as her body recovered from the high dosage steroid regimen, but unfortunately she now struggles with the low thyroid issues and maintaining a normal balance with her thyroid meds which sometimes presents a challenge since it is difficult to determine the exact dosage she needs.
I Hope that the doctors are able to determine the cause of Tom's anemia soon and that they will find that it is a benign and easily treatable condition.
I agree with Olga, that regardless of the cause of Tom's anemia and fatigue symptoms, he should definitely have an annual bone scan in addition to his other more frequently scheduled scans.
Take care dear Kathy and keep the Board updated as you are able.
With special caring thoughts, healing wishes for Tom, and continued Hope,
Bonni

[Kathy]

The next step is a capsule endoscopy to be done of February 5th. They want to look at the small intestine to see if the cause is there - we meet with the oncologist next week as well. We have all of our questions and concerns written and ready to ask. I do not know what we would do without all of you and your advice and knowledge. He continues to have the night sweats and is so run down.
We celebrate our sons 19th birthday today - what a blessing each moment is. Thank you all for the love and support you give us everyday!
xoxo
Kathy

[D.ap]

HI Kathy and Tom

I am confused? Wasn't a colonoscopy performed?
Maybe the camera is looking at the stomach ? Or maybe they noticed something in colonoscopy.
Anyways we are holding out for an ulcer for sure.

Take care
Debbie

[Kathy]

We are being told that there are parts of the small intestine that cannot be seen with a colonoscopy and regular endoscopy. It is a small section, but they feel they need to check it as nothing else has shown up. This will give them a serious (my understanding, thousands) of pictures of the entire track.

[Olga]

I have to say that ulcer is not the only thing that could be found there, we had cases of the ASPS mets in the gastrointestinal system before.

[Kathy]

That fact has not left my mind Olga, but I have to try and stay up beat. There are 3 kiddos in our home that depend on it. I cannot go there in my mind today. Obviously I will if we have too, but I cannot, not today.
I know how right you are;) and I do appreciate your honesty and advice.

[Bonni Hess]

Dear Kathy,
It sounds like the doctors are being very thorough in their efforts to determine and diagnose the cause of Tom's concerning anemia, fatigue, and night sweats, and you and Tom are well prepared with your list of questions and concerns for the oncologist so Hopefully you will have some answers soon, and a benign easily treatable cause of Tom's symptoms will be found. I know that this will be a nervous and stressful several days of waiting for the February 5th capsule endoscopy and results. Please know that you are not alone and feel strengthened by the special caring and support of those of us on this Board who share this difficult roller coaster journey with Tom and you. I Hope that you can find a way to relax and enjoy the weekend (GO SUPERBOWL SEAHAWKS!!), and that February 5th will bring good news. Take care dear Kathy and happy belated 19th birthday to your son
With warm hugs, deepest caring, positive thoughts, healing wishes for Tom, and continued Hope,
Bonni

[Kathy]

We finally have the results of the capsule endoscopy - and it showed nothing. The oncologist is starting him on iv iron therapy once a week for 4 weeks. I asked about a bone scan and he again told me he did not think it was necessary, that Tom would start to feel better with the iron therapy. Of course I want my husband to feel better, but there still needs to be a cause to the anemia. Why? I don't understand why he won't check the bone marrow. I have a call in to another Doctor that treated TJ's L4 and an email in to Tom's oncologist questioning his decision not to do a bone scan. It makes no sense to me. TJ had some energy Thursday and Friday, but Saturday and Sunday were a struggle once again. We know there is blood in his stool. Where is it coming from. I also asked why they haven't checked his hemoglobin levels again and the Doctor did not respond that that question (it was via email). We do not have an appointment to see him until March 5.
Advice please as we need it!
keeping every single one of you in our thoughts and prayers everyday,
kathy

[Olga]

It really sounds absurd - to treat the consequences without locating the place where the blood is coming from. Kathy, did they ever do an abdominal MRI scan? I think you need a second opinion from the GI specialist, may be ask for a referral? You are obviously looking for a way to locate a source of the occult bleeding from (most probably) a small tumor.
I found a relevant article for you to read check it out to see if everything that is recommended is done:
Gastrointestinal Bleeding: Causes and Clinical Management: Occult Bleeding
http://www.medscape.org/viewarticle/718890_2
I've seen some articles that small mucosal tumors might be missed by the capsule endoscopy.
http://www.ncbi.nlm.nih.gov/pubmed/24379629
http://www.ncbi.nlm.nih.gov/pubmed/21735085