[jo53Participant]

Hi Carol

This is my first post though I have been reading the site for some time. Am prompted to join in now to say I am shocked to hear the ‘quips’ you’ve had about pomalidomide cost. Not very professional is it, and quite understand that it is upsetting to you. Perhaps they are just trying (but failing) to lighten the mood in clinic.
Anyway, delighted to hear you, and Andy, are doing so well on pomalidomide. That’s super news. I too am on this drug, but only cycle 7 so far and with slightly mixed results.

I wonder if anyone taking pom has found their hair thinning. Mine certainly is.

Best wishes Jo

[andygParticipant]

Hi Carol.

I’ve just started my 22nd cycle today and still no major problems with Pomalidomide side effects. I had a bout of cramps yesterday in the usual places! My lower left leg and my fingers. I can laugh at my finger cramps as they’re not too painful just awkward but my leg cramps are another matter! Fortunately I don’t get them every cycle.

It’s strange how your medical team react to you being on Pomalidomide and its cost my team are the opposite every time the price comes up, rarely, they say I’m worth every penny of the cost 😇. I’m the only one in our unit getting Pom at the moment the others it didn’t work for or the side effects were too harsh.

Off to Greece for a few drinks and a bit of relaxing in the sun a week before for I hopefully start cycle 23 I hope I stay a couple of cycles behind you for a long time to come.

Every day is a gift.

Andy xx

[andygParticipant]

Hi Jo.

Welcome to the wonderful world of posting. It can be daunting at first but I believe everyone has insights and advice that will help others. Questions posed maybe the same as others, who are just readers, who are a bit reluctant to put fingers to keyboard so every little helps as a big supermarket are keen to tell us.

What are your mixed results Jo? If I maybe so bold to ask? Are they side effect problems or are blood results not so good?

My side effects are mainly cramps at the end of cycles but not every cycle fortunately. As for thinning hair I wouldn’t notice 👴🏻😂

Every day is a gift.

Andy xx

[jo53Participant]

Hi Andy
Hope you had/are having a good time in Greece.

Pomalidomide is giving me problems both on efficacy and side effects. My light chains originally fell, but are now going up: not very high, last reading was 650 and if that was all I think no-one would be too worried. But the treatment is also really hitting my blood counts, especially neutrophils. There has been talk of my coming off the drug but I certainly want to keep going if I can as the alternatives seem pretty limited.
It is great to hear how well you are doing on pom, especially as I know what trouble you had with earlier treatments. Do your blood counts manage to keep stable?
Incidentally, I was diagnosed in 2012 when I was 59. I have no symptoms. Had lenalidomide (on Myeloma XI trial), SCT, no maintenance, Velcade, lenalidomide again and now pom. I do respond to treatment but, like lots of people, the response does not last long.
Best wishes Jo

 

[andygParticipant]

Hi Jo.

Sorry Pomalidomide is causing you problems. The side effects you describe sound very much like the ones I suffered whilst I was on Revlimid(Lenalidomide). My neutrophils were rarely over 0.8 and sometimes dropped as low as 0.5! Hopefully your light chains will stabilise and you can continue with Pomalidomide.

My bloods have all recovered from the battering they got when I was on RCD and are stable I just hope they stay that way for some time to come because like you I know the options are starting to run out. I notice you haven’t tried Thalidomide maybe that could be an option.

Has there been any mention of a second SCT?

I did read or heard somewhere a theory that Myeloma is made up of several different cancers and when you are treated it wipes out one type and allows another type to flourish so that remissions could be short. It was only a theory but it sort of made sense to me.

Oh we go to Greece a week on Sunday and cycle 23 hopefully starts when we get back.

 

Every day is a gift.

 

Andy xx

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