New Myeloma Diagnosis - looking for information

Hello

My cousin has been diagnosed with Myeloma this week, still waiting for full diagnostic test results and she is seeing the consultant again in two weeks for more information and treatment plan. Can anyone shed anymore light on the process? I don’t know anything about Myeloma as I have Leukaemia

Thanks

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Anna, so sorry to hear about your cousin’s diagnosis, you must all be in shock. I do not think it matters if you are the patient, family member, friend or carer we all share the same fears, anxiety, thoughts and feelings. Take care all of you and please let us know how you are all getting on.

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Hello,
I have myeloma, which was diagnosed in June of last year, I have finished first line treatment and am in plateau. Depending on what variant of myeloma your cousin has they will either be put on watch and wait or start active treatment, which will usually involve a course of chemotherapy of which there are several types and if eligible possibly a stem cell transplant after induction treatment. The good news is that the treatment for this disease is the best it has ever been and people are achieving good periods of remission, so it is realistic to be hopeful. As myeloma is technically incurable most patients have life long episodes of being on and off treatment. It’s best to describe treating myeloma as a marathon not a sprint, a hackneyed phrase I know, but apt as from a psychological and physical perspective you need to pace yourself. Any other questions please feel free to ask anything you like, I am a open book
Best wishes
Alfie

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Thank you Alfie… this information is very helpful… much appreciated

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Thanks Erica… it’s been very tough, bringing back my anxieties as we as worrying for her… at least I can help with the knowledge & resources I have. Thanks for your support… strange situation as I didn’t think another family member would be diagnosed with a blood cancer… myeloma is rare at her ago too… xx

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So sorry to hear of your cousin’s myeloma. I hope that your experience is of some help to those around, and at least you will be be able to find information that can be trusted to pass on. Take care xx

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Sorry to hear your news. I have multiple myeloma and currently in remission. I started treatment immediately after being diagnosed. I had a course of treatment which consisted of chemo injections (stomach), high dose steroid tablets and tablets the treatment was called vcd.
The proteins in my blood plateaued so they put me on thalidomide, which although make you feel like a zombie at times, did the trick and cleared the blood.
I then had a day of high dose chemo to ensure everything was clear and ready to harvest my stem cells.
The harvesting took place over 3 days and they got a good yield of stem cells.
I then went into hospital to receive the stem cells. Again a high dose of chemo to clear everything, then a couple of hours to give me half my stem cells back (half kept when i next require them). I was in hospital for approx 28 days.
Discharged in the August and back to work phased return in the January.
I am now on calcium tablets and receiving monthly iv zoldronic acid as treatment has affected my bones (i am 55).
The worst thing about diagnosis, is the mental strain.
Please feel free to ask any questions.
I wish you both all the best on your journey x

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Dear janner,
As a fellow myeloma patient just wanted to say how pleased I was to read that you have had a successful sct and are back at work. Stories like yours offer encouragement to newly diagnosed patients so thank you for sharing. I agree with your comment about the mental strain, I found this more difficult than the treatment itself.
Best wishes
Alfie.

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Hi Anna, in case you haven’t already please do share our support services details with your cousin. And I’d encourage them to look at our booklet on myeloma, it’s quite comprehensive and hopefully explains things quite well. I’d be happy to send it to them if they would like. Take care of yourself, I can imagine it brings back some feelings and worries with your own diagnosis and treatment. Dawn x

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Hello @Janner,

Thank you so much for sharing your experience with multiple myeloma. I am sorry to hear about your recent diagnosis and I can only imagine how difficult it must have been for you. However, I am delighted to hear that you have achieved remission. Thank you so much for offering your advice and support to @AnnaMam at such a crucial time for her cousin.

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Hi @Janner, I have Chronic Lymphocytic Leukaemia and I was diagnosed 15 yrs ago and I have been a very lucky girl to have been on watch and wait ever since. However 8 years ago I was diagnosed with osteoporosis, I lost 5" in height and several of my vertebrae have fractured and compressed over the years. I am now 69yrs old but after other medications were tried I am also on calcium tablets and iv’s (actually in the haematology day unit!!) of zolendronic acid. I have been on it for 4 yrs and I was advised I could only have it for 5 yrs medically, but I swear by it and will fight to stay on it, I haven’t had any fractures whilst on it.
I also really think pilates has helped me keep a bit stronger and my core muscles support my spine a bit. I know you say you have just gone back to work, which must be very tiring, and I am sure you are still dealing with the mental and physical strain from your diagnosis and treatment, but I wondered if you are taking any form of exercise?

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Hi Mandy
Thank you for this information, we are still waiting for more results to fully diagnose her and what her treatment will be. This will be very helpful once we know more, thank you again.

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Hi annamam, sorry to hear that there is still not a definitive diagnosis but as all myeloma patients are totally unique geting the disease profile correct makes a big difference to choice of therapy used and consequently the outcome of treatment. So fingers crossed everything will become clear soon and treatment can begin.

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Thank you, yes though I am an expert in AML I have a lot to learn about Myeloma, your help is much appreciated. They have said they aren’t going to treat her yet but they are still doing tests/investigations as she is quite poorly with symptoms. We will know more by the end of this week.

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Wishing you all the best Anna, and I hope there is a way forward after the consultation. I hope you continue to stay well xx

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How is your cousin doing @AnnaMam? And you too?

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Hello Dawn
Thanks for asking… at the moment she is still waiting for results of an MRI… She’s been told the Myeloma is smouldering… she’s having strange symptoms in her legs and it really anxious about the Myeloma becoming active. She’s seeing the consultant this week so I’m hoping she’ll get some clarity

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I have Multiple Myeloma diagnosed in July 2018. I think everyone’s experience is different but the treatment seems to have improved over the years giving cause for hope. I never really suffered bad side effects as a result of my chemo. The worst thing has been bad joint pains since the diagnosis and I was a bit ill when I had my stem cell transplant. I did manage to go back to work very quickly both after the original chemo and the transplant. I was determined to get my life back to normal as much as possible and enjoy life and go places which I’ve managed very well. Before my diagnosis I suffered a back fracture as a result of the Myeloma cells lodging in my spine so the toughest challenge was learning to walk again. Most people I’ve met with Myeloma though haven’t had this happen to them. I’ve also come across a lot of people who have lived with the disease for many years so the prognosis is not as bleak as it used to be.

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I have back and joint pain since SCT, which has got worse the last 3/4 years. I am fortunate that I was introduced to a lady who does massage, reiki and other wellness therapies. My GP gave me the go-ahead and regular massage has helped. I suspect your back fracture would limit you in this respect? Best wishes

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Thank you for this insight
Regards Anna

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