[thesnipergeckoParticipant]

Hi all

Today felt like the right day to join. I’ve been lurking for a while. My wife was diagnosed with MM Stage II in December of 2021 aged 39.

She had an initial 6 Cycle treatment of bortezomib (velcade injections) and thalidomide (tablet) and achieved partial remission. Unfortunately due to her disability (Cerebral Palsy) she is unable to walk, and developed a pressure sore which prevented her from having stem cell treatment.

The pain in her lower back started to increase and late last year and reared its ugly head again. In December 2022 she had relapsed and a plan was put together to begin second line treatment.

A few months of bortezomib and daratumumab injections twice a week, along with dexamethasone and morphine for the pain.

We just received the news that she has relapsed again, the 2nd line treatment isn’t working (The consultant never said but I assume this is now classed as Refractory Myeloma?)

She has started a course of third line treatment now, dexamethasone and lenalidomide. We’re absolutely distraught that it returned within a year, and now to find out second line treatment isn’t working.

I was made redundant in April too, and have taken the decision to not go back to work for a while, to stay home and care for my wife and our 7 year old daughter.

She also had radio therapy earlier this year to break up a build up of plasma cells that had formed in her sacrum. She’s just had another MRI this weekend and we’re waiting to hear back from that, hopefully we hear something soon.

Don’t really know what else to say. I’m at a bit of a loss for words.

Anyway. Thanks for reading.

Kind regards
Paul.

[12fern34Participant]

So very sorry to read this Paul,fingers crossed for your wife yourself and your child.

[mulberryParticipant]

Hi Paul
I’m sorry to read your family’s particularly difficult experience of myeloma. It must be so worrying for you both, not least because your child is so young.
Has your wife been told that she has any known reason to have difficult to treat myeloma, such as high risk genetic changes?
Even without known high risk changes there are myeloma patients who don’t respond well or “averagely” to every treatment, but who nevertheless respond better to some treatments. I’m sure we all hope that your wife will respond for longer to lenalidomide and Dex. Just a thought: Is your wife being seen at one of the bigger regional or London hospitals? If not, it may be worth her asking for a second opinion at a major hospital which is dealing with myeloma on a routine basis. It’s amazing what treatment options some doctors can pull out of the bag.
Hopefully later on in her myeloma treatment your wife will respond to one of the new treatments such as bispecific antibodies or CAR-T cell therapy when they become available.
Have you discussed whether your wife might be eligible for a drug trial, which might enable her to access one of the new treatments before they are generally available. I would hope that her disability would not exclude her since so many real life myeloma patients have co existing medical complications of one sort or another.
Best wishes, Jane

[kh0305Moderator]

Hi Paul,
Sorry to read about the short relapses your wife is experiencing. It must be very disheartening and worrying for you all. I hope that the latest treatment brings a much longer relapse period for her. If not, try not to lose hope – there are so many combinations and treatments available and moving on all of the time. We were lucky the first time round that dad responded well but the 2nd and 3rd line treatments have been much like your experience and it is very frustrating as just as you feel like you are moving forward it takes two steps back again. As Mulberry says, it may be worth looking for a second opinion on treatment options at a different hospital as they may suggest a different combination that might be better suite to your wife. Keeping everything crossed that this one works for her xx

[sandy123Participant]

Hi Paul,

I’m really sorry to read about your wife’s experiences.

I am presently on third-line treatment. While I was waiting for a decision to be made I read a lot about clinical trials, which Mulberry has also mentioned. Unfortunately for me, I did not meet the inclusion criteria for the ones that were local to me at this moment but I did feel excited about the thought of taking part in a trial for many reasons.

Trial drugs are often potentially more advanced than what is on offer from the NHS. Also, as far as I understand, a trial doesn’t count as a ‘line’ so it gives you an extra chance, so to speak. Also I liked the thought of contributing to medical advancement in a small way. Theres also something about compassionate drugs which I don’t fully understand but it could be worth asking about.

I think if you ask on the Myeloma Infoline you can get advice on this and Blood Cancer UK also have a specialist clinical trials nurse who will help you search for suitable trials, just in case this gives your wife a bigger range of options.

Your wife and daughter are fortunate to have your support in this period between jobs. Keeping up morale is a challenge with myeloma in any case but all the more when treatment isn’t going to plan. I’m thinking of you all and hope you will find a treatment plan that brings improvement and hope.

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