[jan66Participant]

Hi, Can anyone help. I was diagnosed with light chain myeloma the end of last July. I am 57 and was fit and well cycling ,walking etc but I was experiencing breathlessness, blood tests showed anaemia, poor renal function and then light chains of 15,000, I started DVTD straightaway, after 7 doses of chemo I had a stem cell harvest but it failed they only harvested 0.8 million stem cells despite me having plerixafor. I continued on DVTD for 5 cycles my light chains dropped to 1165. 3 weeks after stopping DVTD I had IV cyclophosphamide to stimulate stem cell production ready for harvest, but my CD34 count was so low a second stem cell harvest wasn’t attempted.
Whilst off DVTD for 1 month my light chains have gone up to 2794.
I saw my consultant this week he has told me to forget SCT it’s never going to happen due to my lack of response to cyclophosphamide and how quickly my light chains have risen. I am due to start an 18 month course of maintenance therapy of KRD (carfilzomib, lenalidomide and dexamethasone). He painted a very black picture with limited treatment options for me, he mentioned trials and that he felt my disease would not be stable enough to get through the screening phase of any trial. I have been distraught since this news, is there anyone out there who has had a similar experience to mine with a positive outcome from having Line 2 treatment.

[davidainsdaleParticipant]

Hello jan66

Sorry to hear about your difficult few months since you were first diagnosed with myeloma. If you’ve not already done so it may be helpful to speak to one of the nurses on the Myeloma UK helpline.

I’m a support group leader in the North West, first diagnosed in 2013. I’ve met quite a lot of myeloma patients in this role, and can say that you are by no means alone in your response to the treatment. What they say is that myeloma is very individual which seems to be true, and also that it’s a marathon not a sprint.

Later lines of treatment can sometimes be more successful than the first line, and there are new drugs coming down the pipeline such as the bi-specifics which may be worth asking about.

The Myeloma UK website has a section on clinical trials which may point the way forward for you. I think there may be ways to access some of the novel drugs, for example the compassionate use programme. Myeloma UK will know more about this. Also there may be advantages in asking for a second opinion.

Hope thsi helps.

David

[mulberryParticipant]

Hi Jan66

I too belong to a local myeloma support group where we have members who have not responded for long to first (& in one case) second line treatments, but have gone on to have stable, low levels of myeloma so far for several years.
There are known to be 63 driver genes potentially allowing our myelomas to proliferate, usually in combination of at least 5 at diagnosis, which is why the course of myeloma seems such an individual thing.
However that can mean that we respond better to certain drugs than our doctors anticipate, certainly this has happened to one of my good friends, and I hope it is true for you too.
There are treatments like bispecific antibodies that are likely to be approved this year, and trials into Tri specifics. These work in different ways to other current drugs so might well work for you, and are “off the shelf” so don’t involve having to wait between lines of therapy (unlike say CAR-T cell therapy).
As your myeloma is more complicated than many, you might benefit from getting a second opinion from a major regional hospital,for another one if you are already being treated at one. Another option is asking for more detailed testing to look beyond the normal FISH testing that you probably had at diagnosis. You may need to push hard for this as it is not done routinely, but there are advantages to knowing what mutations you carry. For example there is currently a UK myeloma trial in 9 locations (Determine trial) of drugs that are known to work against BRAF V600 mutations, but none of us are routinely tested to see if we have this mutation. (It’s thought 5-7% of myeloma patients do have this mutation, and it does cause response times to be short).
Try not to despair. You are still here, and it sounds like your current quality of life is ok. Myeloma is generally like a steeplechase, most of us have occasional challenges, sometimes life threatening, but then we can be stable for many months or even many years. In the meantime myeloma research is progressing fast, and new, more effective treatments are being approved each year.

[jan66Participant]

Thankyou so much for the information you have both given , you have made me feel more positive and I have now got an appointment with a MM specialist in London next week so I will be asking the questions that you have posted
Thanks again

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