Tom from Pennsylvania - Dx 2002, RIP 2021

[Kathy]

Thank you to all for your quick responses. Celiac's has been ruled out. There is blood in his stool. His liver and kidney function seem fine. They have talked about doing another capsule endoscopy. We are currently waiting to see when the appointment with the gastro doctor will be. They said they would be scheduling that today.
I want you all to know that I pray for you everyday - not a single day goes by that you are not in my thoughts! What an amazing support you have been to our family. I do not know what we would do without you!

[D.ap]

Kathy ,

Thanks so much for your prayers and response .
I am so happy for you two to of been able to schedule your gastro appointment BEFORE your up and coming trip
Let us know when time allows how it goes

Much love and with prayers
Debbie and family

[Bonni Hess]

Dear Kathy,
I am so very sorry that Tom is continuing to experience perplexing undiagnosed fatigue and blood in his stool which is of course concerning. Hopefully the gastroenterologist will be able to determine the cause of his symptoms and it will be a benign and easily treated diagnosis unrelated to ASPS. Hopefully too the situation can be quickly resolved so that you can move forward with your upcoming planned trip to Mexico and relax and enjoy a well deserved vacation in the warm Mexican surf and sunshine.
With special hugs, caring thoughts, healing wishes for Tom, and continued Hope,
Bonni

[D.ap]

Dear Kathy,
I am so very sorry that Tom is continuing to experience perplexing undiagnosed fatigue and blood in his stool which is of course concerning. Hopefully the gastroenterologist will be able to determine the cause of his symptoms and it will be a benign and easily treated diagnosis unrelated to ASPS. Hopefully too the situation can be quickly resolved so that you can move forward with your upcoming planned trip to Mexico and relax and enjoy a well deserved vacation in the warm Mexican surf and sunshine.
With special hugs, caring thoughts, healing wishes for Tom, and continued Hope,
Bonni

Hi Kathy and Tom

Wanted to share another link to anemia

http://chemocare.com/chemotherapy/side- ... nemia.aspx

I have no idea how compromised Tom's situation is with his blood count however I know for a guy to be in bed for a week is sometimes unusual?
Make this vacation the right choice for you both..away from your health group and your families.. I know you both will make the right descion..

Know that we all care about you

Love
Debbie

[D.ap]

Sorry. Tom was in bed for a weekend
My bad
Love
Debbie

[Kathy]

Are there any cases of metastasis going to the bowel. Increased pain led to an mri that led to a pet scan. It showed growth at the l4 and something on the bowel. Any thoughts?

[Olga]

Kathy, as I remember (and confirmed by search on this board -found an older Bonni post) Brittany had mets to pancreas, duodenum, spleen, and small bowel intususception - they all thankfully resolved on cediranib.
How about a laparascopic surgery for L4 and bowel met.

[Bonni Hess]

Dear Kathy,
I am so very sorry for Tom's increased pain, the growth at his L4, and the suspected bowel lesion. As Olga has already shared with you, Brittany was diagnosed with a met on her small bowel intususception five+ years ago at the same time as she was diagnosed with multiple other abdominal area mets. The small bowel intususception may have been treatable with resection, ablation, or Cyberknife, but since Brittany had multiple other abdominal area mets including a Life threatening unresectable/untreatable met at the head of her pancreas, we had no other option except to pursue a systemic treatment. Thankfully, as Olga told you, Brittany's Cediranib treatment appears to have completely destroyed all of her abdominal area mets, as well as her innumerous lung mets. Hopefully Tom's L4 met and suspected bowel met can be treated without systemic treatment as long as the rest of his disease seems stable. My most positive thoughts and very best wishes will be with dear Tom and your family, and I will be anxiously awaiting your next update. Take care dear Kathy and give yourself and Tom special hugs from me.
Reaching out to share deepest caring, healing wishes for Tom, warm friendship, and continued Hope,
Bonni

[D.ap]

Are there any cases of metastasis going to the bowel. Increased pain led to an mri that led to a pet scan. It showed growth at the l4 and something on the bowel. Any thoughts?

Hi Kathy and Tom
Remind us. Did Tom have another growth that was treated around that same area?
What part of the bowel has a growth and how big?
I am sorry to hear of the scan findings I assume they looked vascular ?
Write when you can

Much love
Debbie

[Olga]

Kathy, Deb just found an article about bladder ASPS met and posted it in the Other metastases here:
http://www.cureasps.org/forum/viewtopic.php?f=17&t=894
The article is avail. in the link there and also in the full text here:
www.rbrs.org/dbfiles/journalarticle_0927.pdf
and when I read it, I noticed that there is a description of the intestinal mets they know about that your doc might need to see:

" Only four cases of ASPS
intestinal metastases has been
reported in literature so far, the first
by Sueyoshi in 1996, affecting
jejunum with gastrointestinal bleeding
associated (10). In 2001, Sabel et
al. described a case in small bowel,
causing polyposis and intussuseption
in a 42-year-old male with previous
history of ASPS metastatic to
lung and brain (11). Zilber et al. in
2003 found the first case of colic
metastases in a 43-year-old woman
with a leg primary tumor more than
15 years before and multiple lung
and brain metastases. She was
found to have caecal metastases,
revealed by anaemia, and was treated
by laparoscopic right colectomy
(12). In 2009, Banihani et al. published
a case about a 38-year-old
man with a huge abdominal mass
infiltrating the omentum.
Pathological diagnosis was ASPS.
He had metastases in both lungs and
the right atrium. Afterwards multiple
sessile polyps also appeared in
stomach and duodenum with diagnostic
biopsy of ASPS. Finally the
patient developed brain metastases
and died (13).
Primary gastrointestinal ASPS is
extremely rare. Only one case has
been reported in 2000 by Yaziji et al.,
a primary ASPS of the stomach in a
54-year-old Italian woman without
evidence of primary neoplasm elsewhere
ten years following the initial
diagnosis (14)."
may be something here will ring a bell.

[D.ap]

Dear Kathy and Tom

I hope today has brought you closer to answers on Tom's pain and anemia
Write when you are able

Love
Debbie

[Kathy]

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

[D.ap]

Dear Kathy and Tom

Thankyou for the update.
We will talk soon.

Much prayers and love
Debbie

[D.ap]

Hi Kathy and Tom
Two ideas I'd like to leave you with tonight
Performing the balloon endoscopy

1) the possibility of the intestinal tumor being incredibly vascular ie the bleeding possibility

2)the difficulty of dxing possible lymphoma and having to do a biopsy and maybe causing a bleeding situation

Can it be determined before the sched surgery on the 25th?

http://lymphoma.about.com/od/testsforly ... gnosis.htm

Some things to discuss with your onc/surgeon if you haven't already discussed these above concerns
I just needed to let you know what my concerns would be if I were there
Good night
Love
Debbie

[Kathy]

Debbie thank you so much for your questions. You were right to worry about the bleeding although thankfully it did not pose any problems for Tom. They thought it might at first, but he came home from Pitt Monday after the procedure and has been tying things up at work all week before surgery on Monday. The Dr. Does feel certain that the spot is an ASPS met. We find out today what time surgery will be on Monday and we will head to Pitt early Sunday morning to prep. Tom also noticed a lump on the top of his head on Wednesday. We have talked with his oncologist and he suggested having the surgeon look at it Monday and possibly biopsy it if he felt the need. I emailed the surgeon and he said he could certainly do that if he felt the need once he looked at it.

I will post again after surgery on Monday.
xoxo
Kathy