Lynn 30: I haven't been posting for a long time. I... - MPN Voice

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Lynn 30


I haven't been posting for a long time.

I was diagnosed with High risk myelofibrosis/low risk Mds-5q last September.I have been on Rux until April ,but have been having 2 bags blood every 5-6 weeks,RBC at on average 74.

My haematolgist and I have got me off Rux( it's not been good with me,had a lot of chest infections and breathlessness).I also have bronchiectasis too which is a difficult scenario for me and my haemo to cope with.

Now I have begun Lenalidomide,and wondered if there is anyone on this drug,and how they find it?

Kind Regards Lynda.

7 Replies

Hello Lynn

Firstly I’d like to say I do empathise with you about the transfusions I have them every 3 weeks so know how you feel .

The MDS part of me is RARS-T and I’ve heard that the drug is only suitable for people with the 5q deletion so I really hope it works for you and you begin to feel better

Helen x

champ30 in reply to Helen1952

Thanks Helen,yes I'm hoping to see an improvement eventually!

Have you also got myelofibrosis?or MDS?

Regards Lynda

Helen1952 in reply to champ30

I have ET/MDS rars-t

Which is refractory anaemia with ringed sideroblasts and thrombocythemia

I’m a bit mixed up !

champ30 in reply to Helen1952

We both have a mix, which is a shame but we have to be positive,so I'm told.

Regards Lynda

Hi Lynda

I take Pomalidomide, and before that I was on Thalidomide for a couple of years. Both of these drugs, along with Lenalidomide, belong to the same group of drugs (angiogenesis inhibitors) and have a similar effect. I stopped Thalidomide because of peripheral neuropathy it had caused in my feet. It was thought that Pomalidomide would halt that. I still have neuropathy but it doesn't seem to be progressing with the same speed, or I just simply got used to it. I don't have any other side effects.

Both Pomalidomide and Thalidomide have worked wonders for my anaemia. I became transfusion independent shortly after starting Pomalidomide and it continues today although recently my haemoglobin has begun to drop and the dose had to be increased by a third.

I note that you were diagnosed with High Risk MF, which was very late. Were you asymptomatic until then? Like you, I was diagnosed late, but not as late; I was Intermediate 2 at diagnosis and it appears that this is still the case. Either progression of my illness is vey slow or the drugs are doing something.

I note that you have other complications which may have some impact on the effect of drugs you take but my experience of this type of drugs has so far been positive. Let's hope yours will be similar. Please ask me if you want more information.

champ30 in reply to daisystar

Hello Daisystar,

Thanks for all your information,which is very helpful.I do hope the new drug does the same for me.

With me it all started to become clearer after my respitory consult ant took blood tests after I'd told him I was getting much more breathlessness than normal.

The results came back I was anaemic and platelets 1000.Next step was BMB results being high risk myelofibrosis.2 weeks later they had 2nd results MDS with- 5q deletion,low risk at least

So I really do hope this lenalidomide will work for me.I have accepted that for me it's ok days and not good at all days.

Unfortunately never brilliant days,this is for me.

Regards Lynda

Oh Lynda, I am so sorry to hear this and I sympathise wholeheartedly. I know exactly what you mean. I never have brilliant days either but have now accepted it. Enjoy the OK days if you can, and good luck with lenalidomide. x

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