[ammeParticipant]

I have read various posts and now I feel I need the communites support. I was diagnosed in 2016 lots of lytic lesions and needed hip replacement to fill hole above acetabulum in Nov 16. 3 rounds of CTD before 9 week break then 4 more rounds of CTD, STC in June 2017 and am now showing increased light chains. I do not show paraproteins in my blood. I have had MRI and due another as have pain in various areas of my Thorax. I am 61 and initially refused a 2nd STC as my husband has Altzheimer (he’s 79) and I have a 94 year old mother who is well but needs support. I felt very overwhelmed by this. I am now having second thoughts and wondered how people fared with 2nd STC, hints and tips.

I have been offered Velcade or Carfilzomib as alternative. My Consultant is a Myeloma expert but I do not have a good relationship with him and I am going to seek a second opinion. I also wondered if anyone had changed Consultants.

[davidainsdaleParticipant]

Hi Amme

Your question is one that I have been thinking about myself having relapsed after my first SCT in 2014 but not yet on further treatment.

I know of several patients who have successfully had a second SCT, and one even a third. Clearly your clinical team is in the best place to advise on your individual circumstances but it seems to be that age and general health, apart from myeloma, are key factors to take into account.

In our area of Merseyside there are agencies which could provide short term support to a family during hopsital treatment, this may be something you could explore in your area – Macmillan might be a good starting point.
Hope this helps.

David

[kevinParticipant]

Hello Amme
I was diagnosed in 2006. I am now 61. Since then I have had two relapses. My initial treatment was CDT followed by a SCT the on my first relapse another course of CDT and another SCT. Each treatment gave me about 4!/2 years remission. My last relapse was at the end of 2017. I had a course of Carfilzomib and dexamethasone and currently on a maintenance dose of the same until this November. The initial course left my paraproteins undetectable which they still are. I have a good relationship with my Consultant and have always followed His medical advice. We have know each other a while now ! Best wishes with whatever decision you make.

Kevin

[ammeParticipant]

Kevin and David thank you for your responses. I have seen my GP and she agreed that a second opinion would help the decision making process.

I also spoke to a McMllan nurse his afternoon who had worked in an Haematology Transplant centre and was extremely helpful. She has given me a link to a site called Uptodate where there is very well presented info on all aspects of Myeloma. She also encouraged me to consider a 2nd STC and said there are other drugs that can help Stem Cell release from your bone marrow.

I have concerns that I may not get enough stem cells. I only produced enough for one transplant the first time. She also said if they didn’t harvest enough but I have responded to treatment then I could delay SCT.

Will have to wait and see but again thank you.

Amme

[cygnetParticipant]

Hi Amme

I’m sorry to hear you have a difficult relationship with your consultant but pleased your GP supports your plan for a second opinion.
I had problems with my initial consultant and my GP offered to refer me to another. You have a right to ask for such a second opinion and even the hard-stretched NHS realises that we don’t all hit it off with each other…..

Fortunately for me the difficult consultant has retired and I now see someone who is a much better communicator. However he is not a myeloma expert and I fully intend to seek a second opinion from an expert on the Myeloma UK list if and when I need to.

I’m sorry to hear about the problems you have been juggling alongside your treatment and I hope life gets easier for you.
Love and hugs,
C xx

[kevinParticipant]

Hello Amme

Just to say I did not have enough stem cells from my first SCT. Not sure whether this was because they only took enough for one or couldn’t get enough. For my second SCT it tock 2 inpatient days to get enough.
Best Wishes
Kevin

[ammeParticipant]

Again I can’t thank you enough for both Kevin and Cygnet for their observations. It makes me feel less isolated.

I am compiling a list of questions for my next visits and will report back. This won’t be before May so I am going to enjoy myself til then!

Amme

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