My husbands platelets are low and are not changing his off his maintenance drug at mo and consultant is sending him next week for a nother bone marrow biopsy as they dont know why they are not recovering im really worried has anyone gone through this ?
Hi @Sas1961 a great big welcome and I am so glad that you have been able to post.
I cannot help you with my experiences, but it must be so hard for you as the spouse when there is so much scary uncertainty, and you are completely powerless to make your husband better.
Who asks how you are, apart from us on our forum?
I hope someone can help you more.
I look forward to hearing more from you both look after yourselves and be kind to yourselves
Hi @Sas1961 I’ve got Myeloma too but never experienced that. I think it’s possibly too early to expect something bad but I know that’s easier said than done as you really want to do something positive. Speaking from experience these things are quite often a waiting game. I hope your husband’s medical team are able to give you some reassurance and that things work out for you both. Let us know how you get on.
Hi @Sas1961,
Welcome to the forum and thank you so much for taking time to share your husband’s current situation with us all. I hope you are holding up okay?
It’s understandable to feel worried and as others have mentioned, i appreciate the waiting for more information can be really difficult.
There can be a number of reasons why your husbands blood counts haven’t recovered as desired and in process of elimination, a bone marrow test is an important one and hopefully the results will be returned quickly.
May i ask does your husband have a clinical nurse specialist at all? I ask as they can be a really great resource should you need to talk to anyone within the team in the meantime.
Please do know that should you wish to talk anything through with us, our support line is always on here for you - Blood cancer information and support by phone and email | Blood Cancer UK
Do Take Care,
Lauran
Thank you very much hope your ok how long have you had this? How are you coping
I was diagnosed in July 2018 but it took a while for doctor’s to take me seriously. They just told me I had a bad back and to stop wasting their time. In fact the Myeloma had caused a fracture in my lower vertebra and I had to learn to walk again as well as have chemo and radiotherapy. I had a stem cell transplant a year later and have been pretty much ok since. I do still get lots of pain in my back and legs but I can mostly do everything I want in life. I know that it will come back sometime in the next year or so as my paraprotein levels have been rising over the last few months but until then I’m going to carry on. At least this time forewarned is forearmed and it won’t be such a shock. Hope you’re keeping well.
Hi Sas…i hope you get the support you and your hubby deserves…my platelets were up and down like mad until the medication was sorted.
Wish you all the best.
Hi @Sas1961 I have been thinking about you both lots.
How are you both doing?
Look after yourselves
My husband just hsd another bone marrow biopsy as they need to no why immune system wont increase three weeks to wait for results so hoping they get to find out why, the waiting is horrible
Oh @Sas1961 you are so, so right that the waiting is horrible, but unfortunately a thing we seem to spend a lot of time doing.
I hope they work out why your husband’s immune system won’t increase.
Look after yourselves, it is exhausting waiting.
Please let us know how you get on.
Hi had results of the bone marrow biopsy not good news his bone marrow not working he now has Myelodysplastic syndrome (MDS) on top of the myeloma waiting on some more results to find out what can be done i think thus news is more devastating than being told he has myeloma so hard to deal with hubby better than me not the news we wanted
Hello @Sas1961
Just reading your news and just wanted to reach out and say if you do need to talk we are here on the support line: Blood cancer information and support by phone and email | Blood Cancer UK. I am on the phones over the weekend too.
Take care to you both
Gemma
Hi @Sas1961 I can understand this is not the news that you were both hoping for.
Yes, I found a 2nd cancer diagnosis hit me more because my thoughts and emotions have always been on high alert from the 1st diagnosis.
Perhaps keep talking with each other and also do nice things together.
Perhaps your hubby’s hospital have a Macmillan Centre or Maggies Centre or equivalent to have a chat to?
Be kind to yourselves
Please let us know how you get on and if you would just like to talk to someone the Blood Cancer UK support line is there for you and so are we.
Hi @Sas1961 I have been thinking of you and your hubby loads.
How are you both doing?
Be ever so kind to yourselves.