New on board > question: abdominal pains

[Aleksandra Poland]

Dear All,

I’ve just discovered this Forum and made a quick check on the topic that sent me searching the web.
Hope you don’t mind if I ask something obvious…
We have so little experience with MDS – since my Mother is ill, the doctors have not been too helpful and did not bother explaining things to us.

Well, anyway. What I would like to ask is, if anybody had any experience with the repeating (5 times last month), sharp abdominal pains with swelling (liver? spleen?)Is it MDS-related problem? Could we suggest something to the hospital? She went to ER again today night and the doctors there have no clue, what to do with her, except giving her the pain relief. And of course they are frightened, as her platelets are really low… But that’s typical.

Thank you very much for any responses.
Best, Aleksandra

PS. To explain a little more: my Mum suffers MDS since 2004, when she was diagnosed, but not exactly. Her hematologist decided, she won’t try to classify the illness, if the treatment proves successful. Well, can be called successful, since Mum’s blood counts keep relatively in balance (little less / little more) with the changing combination of Encorton and Damazol + some B-complex vitamine supplements. She gets no other treatment.

[Neil]

Hi Aleksandra,
It is difficult to determine if the abdominal pain is associated with her MDS.
If it is associated, it might be her spleen. Many MDS patients have problems with their spleen. Her doc can give her a quick examination to find out if it is the problem. Did they rule out appendicitis?
Did you look up the side effects of Encorton and Danazol? Might be a clue.

[Jimbob]

Aleksandra,
Right after they did determine, by bone marrow biopsy, that I did have CMML they did an ultra-sound on my spleen and found it was almost twice the normal size. They told me that an enlarged spleen is common with any form of MDS or leukemia and can become very painful. Mine was only painful when pressed.
The best way to treat a disease is to first determine the type of MDS and that can only be done with a bone marrrow biopsy. I would ask for that as soon as possible – after they have check to make sure the pain is not for an inflamed appendix.
Keep in touch. There are many here to help you and your mom through this.
Jim

[Aleksandra Poland]

Thank you so much for your immediate response!
I forwarded your suggestions to my family in Poland, let’s see, what comes out of the extended examinations. The problem is, this is a little town and not very progresive hospital, and Mom’s regular doctor in the Cracow “Excellence Centre for Poland” does not want to do anything to determine the type of MDS! Or maybe she just does not want to give us this information… Because the biopsy was made, already twice, and even the diagnosis of MDS in general was not easy to get from her – I do admire, how much do all know about the illnes and how you try treating your condition . and I would really wished so much care for my Mom at home.

Once again many thanks – and if you would remember anything else (how do you deal with the enlarged spleen? Is it possible to influence the pain in any other way than with pain reducing medicines? Are there any alternative ways?), please, let me know.
Aleksandra

[Frankie]

Hi Aleks

I just wanted to echo what others have said. My spleen was huge….from so many transfusions and my liver was also very large. I was even considering a splenectomy…but my hematologist said “no!”.
Spleen is on the left side and liver is on the right side. I was in pain a lot of the time from what felt like my spleen rubbing on my ribs.
Also my oncoligist thought that a lot of may colon cramping might be my spleen hitting my large intestine…something like that. ::shrug::
Since I have stopped the transfusions and surviving well on the Revlimid, my spleen has gone down in size and voila! no more pain.
I’m getting back my girlish figure, too.

Frankie

[Aleksandra Poland]

Hallo, Frankie,

I’m so happy to read that there are so many medicines in US and that they seem to help (your example with Revlimid!). Here in Europe the pool of accepted medicines is so little – almost nothing: I read about all this stuff, forward it to my Mom’s hematologist, and the feedback is always “…but we can not use it…”.
Thanks God it is likely that Mom’s trouble this time is only a stone in the urinary tracts – not the progress of MDS. But we’ll remember about the spleen thing.

All the best, Aleksandra

[sarah]

My husband had his spleen removed Sept 05. Tough surgery.

[Author]

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