Enlarged spleen

[LuAnn]

Hello everyone,

It has been a while since I have been on the forum and I once again need your help.

My dad was diagnosed with an enlarged spleen (it doubled in size in the past 6 months) and the dr. attributes this to the procrit he has been receiving and as a result has stopped all procrit and neupogen shots. He is concerned the spleen may erupt if dad continues to receive the procrit.

I disagree on this point with the dr. as dad has been on procrit for 7 years. Why would it affect the spleen now? I think the enlargement is a result of the MDS. Has anyone experienced this or have any knowledge on how to handle this?

The procrit/neupogen was the only treatment dad was on. He was being xfused every 2 to 3 weeks but since stopping the procrit he is getting xfused every 5 to 7 days.

The dr. is looking into getting Revlimid on a compassionate basis as his insurance will not cover it. He is also lookning into decogen and the arsenic trial.

Dad has agreed to see a chinese medicine man and he started taking the tea today.

I feel I need to do something but I’m at a loss as to what that is. We went to another hemo/onco for a 2nd opinion and he feels the spleen enlargement is result of MDS and would continue w/Procrit treatment.

How do we decide who is right??? I don’t want to endanger my father but not sure which is the greater risk, enlarged spleen possibly erupting or low counts treated with frequent xfusions.

Any insight is greatly appreciated.

I wish everyone a healthy, happy and peaceful new year!

[Jack_dup1]

LuAnn,
I have an enlarged spleen and have never taken Procrit or any treatment up until 4 months ago. I have always been told it is because of the disease and to expect it. Good luck
Jack

[patti]

LuAnn,

One of the things that my MIL and I have struggled with all along is who to believe when this or that situation arises and what should we do. It sounds so trite but we have always gone with our “gut” and so far that has served us well. If you’ve been your dad’s caregiver all along then you know his body pretty well (I know that’s true for me with my MIL).

On a medical level, I really think Jack is right about this being MDS related. In the quick short term, do some studying on radiation of the spleen. It worked for Terri’s husband, Bob, and hopefully she will pipe in and give you some more details.

Best wishes,

patti

[patti]

Jack,

Curiosity question – do you know if the Zarnestra has lessened the swelling in your spleen? It’s worked well for your disease and I wondered if it has helped the spleen.

Patti

[Terri]

Luann, Bob’s spleen was always enlarged, Dr credited to the disease and he has been on procrit for over 3 years. The only time they were concerned on the Enlarged spleen was this past year when Bob had two bleed episodes. They felt the spleen was sucking up his plts (plts then were in the 20’s) They gave him radiation to reduce the spleen. Bleeding under control. plts in the 40’s and spleen is still reduced. Per my other post our Dec visit with the doc was an excellent report.

[Jack_dup1]

Patti,
I return for a BMB on Thursday, I don’t know if the swelling has decreased, but I have no pain, even which I push in on the spleen, I was having a lot of problems with it being sensitive to direct pressure.
Jack

[sarah]

My husband, Charlie’s spleen enlarged to the point the Dr removed it Sept of 2005. It was a tough surgery on him, he was transfusion dependent at that time and platelets down to 7000 day of surgery. It was a tough few weeks of recovery. Dr said spleen was the size of a football.

[LuAnn]

Thank you all for your info. We spoke with the dr. today and he did say the enlarged spleen happens with MDS with procrit contributing to it. We spoke about radiation to reduce it and his concern is dad’s HGB could go down to 4.0 since he is holding around 7 or 8. He wants to wait and see before reacting. I’m in agreement with that.

We also found out that dad’s itch probelm could be result of the enlarged spleen. We thought it was a reaction to his many meds. Has anyone had extreme itching problems? The dermatologist prescribed some new creams for dad and hopefully they will help.

Jack – may I ask what the Zanestra is for?

Thanks everyone,

[bill4872]

All I can say is that my Mom has suffered from MDS for three years now and she also has suffered from an enlarged spleen. She is in her final days now, unfortunately. I also think it (enlarged spleen) is a just a product of the MDS disease. She can only eat a little bit at a time because the spleen pushes on her stomach. I am sorry to say we have not found any treatment for this problem which she has had for 1-2 yedars. The doctors did mention a spleenectomy as a possibility but Mom was not interested in that.

[Jack_dup1]

LuAnn,
In regards to Zarnestra, you can get all the info you want if you Google the name.
I am in a Phase 3 clinical trial. It is nearing FDA approval but they insisted on a Phase 3. I take six pills a day for a 21 day period, off seven days then on again. It has helped reduce my blasts, which were not very high to begin with. My white count has been cut in half, to early to say how the long term result will be.
Jack

[KWJ]

My dad is starting Zarnestra in a week. I hope it works like it has for you Jack.I am praying. He is at 22% and starting to have bone pain. They started him on a med to help with the white cells that are now at 32,000. Weird that when you have MDS you want high ones, and now that is a bad sign.

[patti]

Jack,

Will look forward to hearing how your biopsy goes. Zarnestra seems very promising! More so then many others. I know it depends on the person. Glad to hear it’s doing good things for you!

KWJ, those whites are a booger, huh? We beg for mom to get some but get worried if she all of a sudden has a jump of 3000 in a few weeks knowing that that could mean AML going very active. Frustrating, huh? Glad to hear your dad was able to find a trial he could do. I’m encouraged at how the Zarnestra looks right now. Best wishes to him!

patti

[Jack_dup1]

My white increased very slowly over a 3 year period, and it is coming down slowly. The zarnestra is a joy to take, no side effects at all. My biopsy is Jan 11, they will decide then whether to continue with the trial, It has really helped my blasts and whites while leaving my reds normal and platelets stable. I stopped posting about it due to a lack of interest in it.
Jack

[Terri]

Jack, When Bob was first Diag doctor thought maybe he had CMML becuase of the whites and other things he saw in the blood, but the BMB show differently I guess there is a chromosone that is different and Bob does not have it. But so far he has not suggessted Zarnesta -keeping bob on the Vidaza, I would like to see plts higher but His whites we are pleased if they hold in the teens they have been in the 40;s and as high as 77. Since the spleen was Radiated (Bob is definately not a candidate for removal or any surgery due to low plts)
Please do keep posting your results It does help us out here.

[LuAnn]

Jack – good luck with your biopsy! I’m glad you found a medication that is helping you. I think that’s very promising for all of us.

Bill – I’m sorry to hear about your mom. My prayers are with you.

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