Diagnosed with LCMM

Have been recently diagnosed with light chain multiple myeloma.Have been administered dara+vcd 1st dose and it will continue for the next 11 doses.just need to understand the efficacy of this drug whether stem cell transplant will be reqd or not after the current cycle of treatment.quite anxious to get insight on the same if someone has been diagnosed woth LCMM and have been following the same protocol.

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Oh @Vishy I am so glad that you have found us and I hope someone will be able to help with their experiences.
You have suddenly entered, what I think is a scary world of medical language.
Because we have luckily entered an era of being looked at as unique individuals and having treatments tailored to us and our own medical histories your fears, questions and practicalities are probably best, I find, written down and asked of our medical teams.
Personally I have found, and I know it is not easy, try and keep it a step at a time medical thinking and treatments appear to be evolving all the time.
Also I underestimated the shock and emotional side of my diagnosis and many of us will relate to that.
We are here for you, as are the Blood Cancer UK support line on 0808 2080 888 and the Blood Cancer UK nurses @BloodCancerUK_Nurses .
Be very kind to yourself and I look forward to hearing more about you.

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Hello @Vishy
Thank you for commenting and welcome to our forum.
We are so sorry to hear about your diagnosis of light chain multiple myeloma.
The aim of the initial treatment is to kill as many myeloma cells as possible and get you into remission. For further information on treatment and multiple myeloma, our page on first line treatment may be useful to read over Myeloma first line treatment | Blood Cancer UK. This discusses treatment stages and whether a stem cell transplant could be part of your plan.

For myeloma, you usually have a transplant using your own stem cells. This is called an autologous transplant or auto transplant. Rarely, you have a transplant using stem cells from a donor. This is called an allogenic transplant, or allograft.

For any transplant your team will assess your disease, response to treatment, fitness level, any other underlying health conditions and age. It may be useful to discuss your options with your haematology team/ clinical nurse specialist. If you would like to discuss anything in more detail, please do give us a call on 0808 2080 888

Best wishes,
Emma (Support Services Nurse)

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Hi @Vishy
I have light chain myeloma I was diagnosed 8 years ago I’m LGGK
Back then dara wasn’t the first line of treatment but it has since become and I have had it second line with good outcome and tolerability

I had 6 cycles with DVD then had my transplant I’m now nearly 3 years in a very good partial response with dara maintenance stable bloods

DVCD seems to be having very good results
A friend of mine was diagnosed a year ago can’t have a transplant because of age but is in remission and no maintenance after DVD

Happy to answer any questions :slight_smile:

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Thanks erica for the valuable information. Nice to join the forum .lots of worries and queries i think i am the right place.
Thanks again

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Thanks for the valuable input it seems the.induction treatment with dara vcd will keep on remission for a long time .Only worried about stem cell transpalnt.

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Have you been told that you will be having a stem cell transplant?

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Yes 2DB we have been told the stemcell thing is going to happen.Really very worried for this one.
Is it possible to avoid stem cell afyer taking 6 rounds of dara vcd as induction therapy.

Please advise

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Hi
How are you doing with your treatment so far?

What is worrying you about the transplant?

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Stem cell transplant reduces the immunity level and moreover it takes about 6 months to come to terms with normal life .This is what i have heard.Infections come very easily. Thats what worries me.

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Myeloma by its nature reduces immunity

The stem cell transplant is high dose chemotherapy usually melphalan
Put easily it destroys the immune system
Your bloods will be monitored
Your own stem cells are then put back in and these rebuild your immune system so during this time infections are probable. You will be in hospital and the nurses are brilliant at keeping on top of these. You are monitored very regularly
Like all major surgery it takes time for your body to recover. Your immune system is like a new born baby and you will need to be careful of infections
You will need to be re vaccinated

A transplant can give a deeper remission along with maintenance
We are all individual in our myeloma journey and respond uniquely to treatment

Do you know if you will be having maintenance treatment after?

Life will resume and you will have to be mindful you have myeloma even when you achieve some sort of remission so kind of the new you living with myeloma.

Myeloma is relapse/remit even after treatment

I personally have had two transplants one in 2017 without maintenance and one in 2022 with maintenance treatment
My myeloma was found after being admitted to A&E and had already been active 6-8 months and was severely immunosupressed.

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Thanks 2DB for the encouraging words lets hope for the best .

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@Vishy be guided by your consultant
Think about what you would like to do
Live for today
Look for the glimmers in your day
Treat yourself to coffee somewhere nice read your favourite book the little things
Stay focused and positive
Know it’s ok to not be ok

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