[mulberryParticipant]

Hi myeloma2016, I think most UK NHS patients are prescribed zometa as a bone protector rather than xgeva, so you may find more responses on an international myeloma forum. Xgeva is a fairly recent IgG2 antibody whereas the older zometa is a bisphosphonate and as such can cause kidney damage.
Sorry I can’t help, but do let us know how you get on with it.

[mulberryParticipant]

Thank you for posting yorkshirelad. I too have been on lenalidomide maintenance for 18 months, again imported from India.

The Indian pharmaceutical industry is manufacturing generic lenalidomide, poised to take advantage of the world market once Revlimid comes out of patent over the next few years.

For a comparatively small price we are statistically doubling the remission time NHS treatment alone would give us!

The sad thing about this is that by the time lenalidomide maintenance is approved in England, Wales and NI at this rate, the NHS will be able to supply patients with the very same generic drugs that we are taking.

Have a look at your prescribed generic drugs – my aciclovir was made by ranbaxy, my quinine sulphate by Wokhaart, my mother was prescribed a drug made by Dr Reddy. These are all Indian pharmaceutical companies.

We myeloma patients pay a heavy price for drug patenting.

[mulberryParticipant]

I don’t think it’s the myeloma or treatment that is directly affecting my sleep, well spotted a response at 2am!

[mulberryParticipant]

Hi Clare, I don’t think you can ask offensive or stupid questions, a good doctor will try to answer whatever questions you have. It may be worth ringing the Myeloma UK nurse too, Ellen is very knowledgeable, kind and helpful.
As you’ve found myeloma is a very complex disease, or collection of very rare diseases which does impact on responses to treatments and your husband is not unique in having a myeloma that does not respond to the first few treatments.
If I was your husband I would ask for a second opinion referral to a myeloma specialist (if he is not already seeing one). The new myeloma treatments target myeloma in different ways and in trials work for refractory myeloma. Many of the physical and physiological consequences of myeloma enormously improve once myeloma is under control, so don’t lose hope.
My family history of cancer made me wonder if I (we) have BRAF gene, possible but not common in myeloma, so I asked my consultant to refer me to a geneticist, which I found helpful even though the geneticist declined doing full genetic testing at this point. This route may be an option for your husband?
There are an enormous number of genes potentially involved with myeloma, the most commonly mutated pathway being RAS-MAPK pathway, 57% of us patients have mutations of NRAS,KRAS,BRAF, NFI or EGFR genes at some point, so it may be useful to know whether your husband has one or more of these.

[mulberryParticipant]

Hi ukej. I found this stage of treatment stressful without the repercussions of the pandemic. Research has shown that timing of SCT doesn’t seem to have a long term effect, least ways after stem cells have been harvested. I suspect research hasn’t been done on delaying harvesting as is happening to you, but you are in the same position as people who decide not to go ahead with SCT, and this is a tried and tested route. Some centres in USA are rarely recommending SCT now. In the long term those patients do have access to new drugs that we don’t on NHS, but the pandemic will end in a much shorter timescale & you will get the chance to safely have SCT. I’m sure it’s worrying and frustrating at the moment though.

[mulberryParticipant]

WBC= white blood count

[mulberryParticipant]

Hi ukej, there is always a bit of time between the end of induction treatment and stem cell harvest to allow the bone marrow to recover. As I had not had a complete response I had an infusion of cyclophosphamide 10 days after my final induction cycle. I then took drugs to increase stem cell production and had them harvested 9 days later. I had the SCT 27 days after harvesting.
Leeds will have a transplant nurse, it may be worth you speaking to her (him) to check what the current arrangements are during Covid restrictions, but I am sure that they will have procedures in place. I hope the processes turn out to be as straightforward for you as they were for me.

[mulberryParticipant]

I started on 10mg lenalidomide maintenance daily, with low dose asprin about 18 months ago but had to reduce the dose to 5mg daily about 9 months ago as my neutrophils and WBC were consistently too low. Apart from constipation (managed), leg cramps at the end of cycles & possibly some level of brain fog, I’ve not had side effects from either dosage, and these side effects feel ‘worth it’ for the knowledge that statistically it’ll keep my myeloma at bay for twice as long as not having maintenance.
After SCT it seems most people don’t take dexamethasone as maintenance, although those of us who don’t have SCT have a continuous treatment of higher dose lenalidomide plus dexamethasone.

[mulberryParticipant]

It is a possibility that your children’s father has MGUS or monoclonal gammopathy of unknown significance. Currently this is not treated. However it is the precursor to myeloma, and can develop into active disease so people diagnosed with MGUS are monitored.
If he has active myeloma he has been atypical to live for 5 years without treatment, although because myeloma is such an individual disease, this is possible. (Many people even with treatment don’t live for 5 years, although more are with current treatments)
How old are your children, and what questions are they asking? Does their father have any obvious health issues?

[mulberryParticipant]

Hi spenemma
I’m sorry that you are going through this highly worrying time.
It does sometimes happen that stem cells cannot be harvested at first attempt. Two or three further attempts can be made after a longer break to allow bone marrow recovery so it is likely the team will try again.
All is not lost & do not despair if it is eventually suggested that your mother doesn’t have a stem cell transplant.
Patients can remain on medication to suppress the myeloma indefinitely, I believe about 50% of UK patients don’t have stem cell transplantation.
Statistically survival is longer in UK with SCT but some people choose not to have it as it (or rather the melphalan that goes with it) damages the bone marrow, and some people with other health issues to consider, cannot have it. In USA where a wider range of newer drugs are available, some hospitals are opting not to use SCTs for most patients. It may be that the NHS will agree to fund these drugs here, which will make SCT less frequently used.
I hope your mother has better luck next time.

[mulberryParticipant]

Hi Marty
I hope the physical consequences of the fall are getting better now.
I would contact your local social services department and ask for an occupational therapist assessment.
We have had them from two different local authorities in recent years for different family members, and both have been really helpful and have speedily provided some equipment and given excellent advice on other useful pieces of equipment.

[mulberryParticipant]

I’m taking low dose aspirin with maintenance lenalidomide. I take the asprin in the late morning and lenalidomide at night. I do this because I have thyroid medication that has to be taken early morning without any other medication for an hour +. I think the important thing is to remember to take them at consistent times, so whatever works for you.
It is normal to take something to thin blood as there is a risk if DVT with lenalidomide.

[mulberryParticipant]

I’ve got an MRI scheduled for tomorrow. The pain I’d been having for months ‘disappeared’ by the time the appointment came through, so I’m feeling pretty fraudulent, but with this diagnosis I’ve decided to go ahead anyway. I hope your pain does the same, if not, that treatment is straightforward.

[mulberryParticipant]

I think this really is a discussion to have with your consultant or myeloma nurse because risks vary between patients, let alone regional Covid risks.
I am one whose neutrophils have never fully recovered after SCT but so far (18 months on) this has caused no ill effects, eg I’ve had no infections nor caught any viruses.
Jane

[mulberryParticipant]

Ianmac it is always worth asking your consultant questions like this. The answer will differ patient to patient, but it’s a reasonable question to ask. Even if your consultant doesn’t feel a break is a good idea, there may be another option, such as dosage reduction or longer gaps between cycles.

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