[georgesinghParticipant]

Hi All,
I am 41 years old and was diagnosed with Myeloma in Jan 2023, IGG Kappa, with 12% cells in bone marrow and some CRAB symptoms but a clear spinal MRI. My diagnosis came as I had kidney stones in December 2022 and when they did blood tests they spotted the M Protein at 24. I don’t have any symptoms and wouldn’t have known if it wasn’t for the blood test.

I am coming up to my 3rd week of cycle one of 4 of Dara-VRD, before stem cell and more treatment and maintenance.

Fortunately I have not had many side effects with the treatment, but I am nervous about the genetic testing results and also the stem cell and risk of infection post the Melphalan.

It’s been a shock for me being active and fit, and worry as I am a dad of two young boys 9 and 3, I have seen the encouraging outlook of treatments providing better PFS than ever before, but I would be lying if I said I was not worried.
Anyway just thought i would introduce myself and share my story so far.

Thanks
George

• This topic was modified 1 year, 10 months ago by  georgesingh. Reason: Typo
• This topic was modified 1 year, 10 months ago by  georgesingh. Reason: Typo

[deanParticipant]

Hi George

Glad to hear your treatment has gone well.

I also was 41 when diagnosed. My kidneys function was very high from a blood test.

Like you my kids were very young. Just recently celebrated my daughters 18th birthday. Your message reminded me of how I felt back then. Things will get easier.

Regarding the Sct, based on my experience it wasn’t that bad and didn’t have no infections. I did worry before having it but i was fine. Personally I found the front line treatment harder. If you need to contact me directly for a chat at anytime just ask. Good luck

[mulberryParticipant]

Hi George, welcome to the forum. It’s always profoundly shocking to be diagnosed with myeloma, the more so when your children are young. Hopefully in time you will be able to assimilate the disease into a good quality long life, not only being there for your children, but playing a very active parenting role. I am older than you, but I too was diagnosed incidentally, which is a very good thing I now think, though I didn’t at the time. Like you my myeloma was active when diagnosed, but since induction treatment and stem cell transplant 4 years ago I’ve been happily living an almost normal life. I personally know myeloma patients who’ve been living with the disease for 17 & 18 years, and internationally there are patients who have lived for over 30 years. More of our generation of patients, with the current and new potential treatments in the pipeline, will live longer than ever with the myeloma, more like a chronic disease.

With stem cell transplants, our doctors have to warn us of side effects, and there is a long list of potential problems. However that’s a bit misleading really. Very few patients experience the most serious side effects, likewise very few patients have none. (Although I know someone whose only side effect was losing her hair). Most have a few side effects, enough to make them think “never again” immediately afterwards, but not enough to put them off a second transplant once they have benefitted from a good ‘remission’. A bit like giving birth really.
My experience was far less traumatic than I anticipated. I had pretty severe diarrhea & was somewhat tired but nothing much else for the first 8 days followed by nausea but not much actual sickness, extreme fatigue and sciatica for 3 days. On day 12 I gradually felt better and knew I was over the biggest hurdle, even though I had picked up a virus (despite being in isolation). I was discharged then readmitted because of the virus, but was recuperating in hospital rather than being ill with it.
I was raring to go by day 100 and went off on a walking holiday up and down Cretan gorges, pretty much back to my old normal.
Personally I’ve found the consequences of avoiding COVID risk when being immunocompromised more challenging than myeloma per se.
I hope you have a good response to your induction treatment and that your hurdles through it are little ones.
Best wishes, Jane

[deanParticipant]

Hi George

Good luck with your first set of results. Keep us updated.

Yes I’m dealing with my first relapse. Just waiting regarding starting new treatment. If all goes to plan then will have a second Sct. I didn’t have a fish test when I was first diagnosed, no maintenance. This time they want a fish test and I believe they offer maintenance. So just keeping my options open and will go with it.

All the best & keep us updated

[georgesinghParticipant]

Hi Dean,

Thank you for your messages and sharing your experience, good luck with your future treatment hopefully it provides you with a long remission.

George

[georgesinghParticipant]

Hi Jane,

Thank you for taking the time to share your experience and story, I’m hoping the SCT goes relatively smoothly like Dean and to some extent your experience. I have a few months before I get to that point yet.

I am trying to remain positive on the basis that there are many new developments in the treatment of Myeloma and that hopefully means we can all manage this for many years. Facing the uncertainty is a new feeling for me, and it seems that this is something all myeloma patients get better at coping with over time.

Thanks again
George.

[georgesinghParticipant]

Hi All,

So I got my blood work results from the first cycle and the treatment is working, there was 42% drop in M-Protein, and my slight adverse kidney and liver readings and calcium are all in normal range. Elevated Kappa reading also in normal range. This is all encouraging and hopefully the next cycles will continue to be effective.

I got my genetic results back too which unfortunately showed I have a “high risk” which is a chromosome 1 abnormality, that has been a concern for me as it like the other high risk genetics is linked with shorter remission periods. Although I got this news my consultant did say overall my risk was still considered “standard”.

I thought I would give a quick update on my MM journey, thanks for reading.

George

[mulberryParticipant]

Hi George

I’m sorry to hear of your FISH test results, although it’s significant both that your consultant considers your overall risk as ‘standard risk’ and that you have had such a markedly positive response to treatment already.
We are just about to enter a new era of myeloma treatments, with CAR-T and bispecific antibodies tantalisingly close. These may change our outcomes dramatically, so it’s important to keep positive as after you complete induction treatment you may not require any other treatment (except low dose maintenance) for years.
In the meantime I hope your results continue as they’ve started, as good as possible.

Jane

[deanParticipant]

Hi George

Glad that you have got to such a good start. Keep it up. I think I’m starting DVD very soon.

Keep a open mind with the fish results.
You have responded to treatment , so a very good start.

Keep us updated 👍
Regards Dean

[georgesinghParticipant]

Hi Dean,

I got the results of second cycle and para protein dropped another 40% now at 8.45.
So treatment continues to work, one of the liver readings was out of normal range now, possibly caused by antiviral also some of the blood counts have gone adverse but I think that can happen with the D-RVD treatment, and will discuss with the consultant.

Good luck with the DVD treatment, for me the side effects have not been too bad hopefully same for you.

George

[deanParticipant]

Hi George

Great news your doing very well.

I start my treatment on Monday. Getting abit nervous, but definitely ready as I’ve had time to get prepared. How did you find Dara? Apparently I have to wait around 6 hours after to make sure I’m feeling fine.
So hopefully all goes to plan.

Keep us updated, all the best

Regards Dean

Dean

[georgesinghParticipant]

Hi Dean,

I got on fine with the Dara, on the first occasion I was at the clinic for over 4 hours just in case of a reaction. I think the wait depends on the clinic. I was told other patients on similar treatment have not had issues, so that was reassuring however, we are all different and a percentage of patients could have a reaction so the waiting is just for our own safety. The observation time on second occasion was much shorter and after that no more waiting.

I was also told the subcutaneous injection form of Dara which we now have is better from a side effect standpoint compared to the previous drip method. We also have to take anti histamine, and the Dex steroid an hour before which also helps with reactions, although Dex is also part of our myeloma treatment so it’s like a 2 for 1.

I think the Velcade does affect me in terms of my hands and feet get warm, not quite burning or pins and needles which is neuropathy, something to watch.

Best of luck for Monday, from the information I have seen this treatment regime works well for both newly diagnosed and those who have relapsed so that is very encouraging.

George

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