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vanguardsheet
MemberEllie, I am sorry to read about this. Hope you remain strong in this difficult period.
MemberMy Dad has MDS and had done stem cell transplants. During his stay in the hospital, we were told by a well intentioned nurse that some drink peanut soup to boost platelet counts. I do not have the proper recipe but it is a chinese style clear soup where peanuts are doubled boiled with pork ribs (think peanuts’ shells included). We have it at least once a week before my Dad visits his consultant. UNSURE IF THE SOUP REALLY WORKS but his platelet counts have held steady so far.
MemberConrad, understand that your sister in law resides in the Philippines. Other than the US centres of excellence, she can consider Singapore centres too which may be nearer for her. I’m from Singapore and my Dad has had excellent treatment in the local hospitals too. I’m not making any specific sales pitches but some consultants are also trained in US (Fred Hutch) and UK too and the docs here have made significant progress in the areas of stem cell, cord blood and mini transplants. Just wish to point foregoing out as I guess it helps to understand the options available to her.
MemberKaren, Sorry to read about your Dad’s condition. But keep praying and hoping. It is always darkest before dawn but dawn will surely come.
MemberThank you for everyone’s replies. Especially Neil’s. Guess my Dad’s condition is similar to Neil’s. Has del 20q- and his platelets have progressively been hit over time.
Through the active sharing in this forum, I am sure it has brought much comfort and answers to many for this often baffling and tough condition which some doctors may not exactly have a handle on.MemberKarenj, by “Storb protocol”, I am referring to the method of transplant pioneered by Prof R Storb of Fred Hutch.
Loss of engraftment – Believe the counts will dip. GVHD probably exists if the graft is still present. If there is loss of engraftment, I don’t expect GVHD to be present.
The above are my general responses. Please provide the background to your queries so that I can frame my replies better.
MemberThank you for yr response, Sgoodman.
My Dad started on 50mg Thalidomide last week. But the counts remained the same. This week, the doc upped it to 100mg. My Dad has complained of having cramps in his stomach and pain in his feet. Not sure if these are side effects of thalidomide.
MemberDear Andrezej, my Dad has MDS and myelofibrosis. Recently, he’s undergone an SCT but the cells dont engraft well. Thus, his counts are low.
I am his only child and I am scared too. But I tell myself I must pull myself together to help him battle this. He was DX in 2001 and I can still recall vividly the pain and grief it caused me. Today, it still causes me to tear and I can fully share and understand the pain.
Please be strong and let’s us all be strong.
MemberKel, keep talking to him and urging him on. Tell him that there’s a lot of things which you want to do together with him…
MemberNeil, my Dad had his BMT (actually it was an SCT) in Nov-Dec. His counts climbed after the procedure but after day 100, it started to fall off. From what I understand, engraftment is a challenge due to the presence of myelofibrosis.
Kirby and others, thanks for your responses.
MemberBinnie, thank you for your response. We are experiencing a similar issue. My dad had his second SCT in Nov-Dec. Its a mini transplant using his sister’s cells. At 100 days, it showed 100% donor cells, no blasts. But the engraftment has come away. The doc is tapering off the anti rejection drugs quickly with a view of infusion more donor cells.
I am hoping to get posts on how the engraftment experience is improved in myelofiborsis cases. Thank you for sharing.
MemberAndrea, I ain’t all that young already. Will be 29 this year but the blow is nonetheless vile and painful. Its still a challenge to manage his and Mum’s emotions, mask mine, go to work and maintain a strong face… At “better” times, I worry if it will turn down. At “lousy” times, I worry about what’s next.
Sorry, I am not sure if Revlimid can be appropriate for CMML. Any one else can shed any light?Naomi, thank you for sharing. Its very helpful information and I will ask about Revlimid.
MemberNeil, Carl, thanks for your responses. I will ask about Revlimid. Looking at your ages, I feel for you all just as I do for my Dad even though we are miles apart. He’s 60 this year. Was DX in 2001 when I graduated from university. A blow which hit me so low and hard that I feel so deeply hurt for I’m his only child.
My Dad’s RBC still holds out so I guess Procit, which is essentially a RBC aid, wasn’t needed. What I worry alot is that his WBC as his previous Neupogen shots help to marginally boost his WBC only. It does not last long [only a day or two?] or appear not to work. How frequently do you have Neupogen shots? Are there alternative compounds to aid WBC production?
Revlimid was touted by a doc that it can change the way the marrow function? A very promising claim; But I have not found other reports which support the claim.
Also welcome responses to my original thread from others. Thanks and best wishes to all.
MemberSarah, PLT: 70, WBC: 1.06, HGB: 8.6.
He has MDS with myelofibrosis. Had blasts previously but blasts was eradicated following a BMT. However, his counts have stayed low.
Sarah, any experiences to share?
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