Tom from Pennsylvania - Dx 2002, RIP 2021

[Bonni Hess]

Dear Kathy,
I am so grateful and relieved that Tom's capsule endoscopy did not show any tumors or lesions, but I share your and Olga's concern about his continued unexplained anemia and the blood in his stool as well as your justified frustration with his oncologist's inexplicable, and I feel unjustified, refusal to schedule a bone scan and more diagnostic tests. I personally would immediately find another oncologist who is more responsive to Tom's symptoms and to your concerns and willing to do whatever is necessary to find a cause/explanation for Tom's anemia and blood in his stool. I Hope that the IV iron therapy will be successful in alleviating Tom's fatigue, but the question remains as to what is causing his anemia necessitating the iron therapy? Hopefully you will receive a response from the doctor who treated Tom's L4 sometime soon and he will be able to provide some advice for you. Stay firm in your insistance on more diagnositc scans and tests for Tom unitl you receive some type of definitive answer and please keep the Board updated as you are able.
With special caring thoughts, healing wishes for Tom, and continued Hope,
Bonni

[D.ap]

Kathy and Tom

Does Tom take lots of aspirin ??
Is the blood visible to the naked eye? Or is it being detected by a stool test?
What was Toms hemoglobin level at last count ?
How was his kidney functions ?
Just curious

Hope you are making headway soon. After iron treatments what are the doctors plans ?
Thinking of you both today

Love
Debbie

[Kathy]

The Oncologist is saying he does not want to put Tom through any further testing at this point, he said cancer spreading to the bone would cause anemia but not iron deficiency anemia? any thoughts/facts you can share on this?
I have a call into Dr. Fick, he has treated the l4 successfully in the past. He has been one of Tom's biggest advocates. We trust him and are eager to hear back - regardless we want a bone scan - it has been too long since the last one.
Tom does not take asprin, blood work has not been repeated since the initial one several weeks ago, which is another one of my sources of frustration. this is exhausting - I constantly question myself. I am feeling very overwhelmed and I just want him to feel better - his iron therapy is scheduled for Thursday and he is so ready to have more energy.
Thanks for all the advice, I honestly have no idea what we would do without you!

[Olga]

Kathy - don't they have to have a latest blood work result to calculate right amount for the iron IV? In some sense I understand why the oncologist is not that speeding with the bone scan right away - if there is a blood in the stool then the reason for the anemia most probably is the bleeding somewhere along the GI tract (he needs to have a bone scan once a year anyways but now it is probably irrelevant to the acute problem). And actually about the small mucosal tumors that could be missed - the mucosal tumors are the ones that located in the organs walls, not on the surface, but that thing that is bleeding, has to be located on the surface or at least the bleeding has to have an exit on a surface of the GI tract somehwere - otherwise how would the blood get into the stool. Can you figure out what part of the GI tract was not checked by now? The blood work can be ordered by Tom's GP, but on the other hand I feel pity for him to loose anymore blood!

[D.ap]

Kathy and Tom

Good morning.
Kathy I am so sorry for your feeling of frustration. As a care taker , be sure and take time for yourself
It is NOT selfish to do so . You need to recharge your batteries and it is so deserving that you do it for you!

I hope Tom feels some relief soon from his fatigue .
I wanted to share an article I found on anemia if I could

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

Have a blessed day you both
Love
Debbie

[D.ap]

Kathy

Was reading another article on anemia
Found this exercise induced anemia?
I believe you mentioned Tom works out ?

Intravascular hemolysis, a condition in which red blood cells break down in the blood stream, releasing iron that is then lost in the urine. This sometimes occurs in people who engage in vigorous exercise, particularly jogging. This can cause trauma to small blood vessels in the feet, so called “march hematuria.” Intravascular hemolysis can also be seen in other conditions including damaged heart valves or rare disorders such as thrombotic thrombocytopenia purpura (TTP) or diffuse intravascular hemolysis (DIC).

Just wanted to share

Debbie

[Kathy]

Tom had 4 weeks of iron iv and his energy level improved a great deal. He has not had a treatment in almost 3 weeks and they plan on repeating blood work on the 5th of April. A bone scan was done on Friday and they did see a need to do an xray of the femur - he had that done today. Now we wait for results.

[D.ap]

Kathy and Tom

So glad to hear of the energy returning.
Other than the femur did the remaining bone scan look good?
Toms primary was where?
Keep the faith
Let us know when time allows

Love
Debbie

[Kathy]

Tom just called. They feel the area they are looking at is an old fracture. They compared it to past scans and nothing has changed. TJ did break his femur years ago (20 or so). We were not sure what to think and obviously worried that it would not be related. As for the rest of the scan they said everything looked good. I will let you know what bloodwork shows once we have the results.

[D.ap]

Wonderful news!!
Thanks for making our day as I am sure it has been for you all

Love
Debbie

[D.ap]

Hi Kathy and Tom

We are all in hopes that the iron levels continue to maintain and Tom is feeling better as a result of them doing so.

Much love
Debbie

[Kathy]

Hello Everyone,
It has been a while since our last post. After the 4 iron treatments Tom did see a slight increase in his iron level and energy level. It did not last very long. We started taking iron over the counter about 3 - 4 weeks ago and the fatigue came back. We called the oncologist after he spent a weekend in bed with no energy. They ran more blood work and found his hemoglobin levels had dropped again. He started another round of iron via iv today and has been referred to a gastro specialist. We are waiting to see when that appointment will be. Not sure where will are going from here - but we have a flight to Mexico on Sunday and he is insisting we go... I will keep everyone posted. Thanks for the love and support!!

[D.ap]

Our support and prayers with you both
Thanks for the update
Safe travels to you both
Love
Debbie and family

[Jorge]

Hi Kathy,

I'm sorry to hear Tom has the sympton of no energy again.
Obviously, Tom was treated as anemia. But does he has other symptons of anemia?

Hope the Iron IV can help Tom to gain back his strength and you can meet the gastro specialist soon,
Lynette

[D.ap]

Kathy and Tom
Another stab at the anemia
You would probably be experiencing quite a bit of intermittent gastric pain ?

http://www.livestrong.com/article/52377 ... ia/#page=1
Or maybe asthma ?

Sent from my iFone
Love
Debbie