[suzi123Participant]

Hi all,
I’ve just been diagnosed with myeloma- last Thursday – which has come as a bit of a shock as no symptoms at all and picked up through a blood test which I only had due to stomach pains.

All the more difficult to deal with as had breast cancer in 2009 so having to deal with another cancer diagnosis is very tough specially when this isn’t curable.

Treatment of DVTD doesn’t start till 19th April so a lot to get head round.
Would love to hear some positive experiences of people living with this for a long time to help ease the anxiety and worries I have.
My paraprotein levels are 35 but not sure if that is really high or not too bad a place to start this journey from?
Thanks

[mulberryParticipant]

Hi Suzi123, my paraprotein level was 43g/l before I started treatment, so much the same level as you – I was diagnosed 4 years ago.
I found the diagnosis shocking to the core, and feared I was on a one way journey of increasingly poor health. Actually it hasn’t been like that at all. I had a combination of drugs known as induction therapy which meant that the hospital became my second home for a few long months, then a stem cell transplant which requires 3 months of taking extreme care of ourselves. In total a year was given over to myeloma treatments, but since then I have been able to lead a pretty normal, healthy life, hampered only by the risk COVID poses to people like us with compromised immune systems. I have only inconsequential side effects from the maintenance drug which has kept my myeloma totally at bay for the past 3 years, and I hope that it will continue to do so for a long time. When I was diagnosed, I was told that myeloma is incurable but treatable and it took me a long time to realise that the ‘treatable’ is much more significant for almost all of us. Myeloma research is prolific and successful. New treatments are being approved regularly, indeed you will have access to two treatments (Daratumumab & lenalidomide maintenance) that were not available to me. A cure, or more likely treatments to keep myeloma as a chronic disease rather than a life limiting one, is tantalisingly close.
We all recognise the shock you feel at the moment, and the preoccupation with myeloma & fear that we go through. Although myeloma gives us all a unique experience, most of us respond to treatment and go on to enjoy periods when our myeloma is inactive, and life is good.
I belong to a local myeloma support group where the leader has had myeloma for 19 years and four others for more than 10 years so far, and there will only be more people living with myeloma for these times & more in the future given the treatments now available.

[davidainsdaleParticipant]

Hi Suzi123

Sorry to hear that you have been diagnosed with myeloma. You’ll find plent of advice on this forum and I would recommend joining one of the myeloma support groups if there is one near to you.

I was diagnosed in 2013 at the age of 59, now 9 years on. So, to answer, your query I had DVd as second line treatment in 2019, that is without the Thalidomide. ( I had this with CTd as part of first line treatment when my pps started at 55). The DVTd combination is quite new so there probably aren’t many who have had it yet.

I had eight cycles of DVd over 168 days, and if I am totally honest is was a slog particularly towards the end. Neuropathy is one of the side effects to watch out for. That said, I started with pps of 19 and my bloods and pps are now normal, I’m now on Cycle 25 of monthly maintenance. So it does seem to be a very effective treatment. I started a separate thread on this forum about 2nd line Darzalax maintenance which may be of interest.

Hope this helps.

David

[tony642Moderator]

Hi Suzi123,

I am one of the peer forum volunteers. I am very sorry to hear of your diagnosis especially as you have been there before, but you obviously survived that one, so of course that with treatment, a positive outlook and some hope you can live many years with Myeloma.

Although it is not curable, it is treateable. I was diagnosed in different circumstances to you, but the thing is hopefully they will have caught yours at an early stage. There are many treatments now available so your medical team will have a number of options which they will of course discuss with you to from a plan of action as to what is best.

I had a stem cell transplant over 2 years ago, and since then there has been no active signs of the cancer, although it is still there but just lying dormant. This means I can live a nearly normal life. I can do all the things I want to do, including swimming, riding my mountain bike and going to the gym several times a week. Not bad for a 63 year old! lol

I know it will have come as a bit of a shock, no one expects it (just like the Spanish inquisition!)! It is something you need to get your head around, but we have several people on here who are also peer volunteers who are willing to give you the benefit of theri expereinces, and there is also the peer buddy scheme where you can speak to someone else on the phonewho is living with the condidtion if you would prefer to talk to someone rather than do it on here.

keep your chin up, and keep positive. Keep in touch and let me know how things go.

Regards, Tony

[kh0305Moderator]

Hi Suzi123,
Sorry to hear of your diagnosis. Im a volunteer on the forum here and my dad was diagnosed with MM back in Jan 2013. He was in a pretty bad way when diagnosed but following recovery from his SCT he had 7 years in remission where he was virtually back to normal with no real side effects other than a slight change in his hearing. He is currently undergoing treatment for his first relapse which has been a bit up and down but is starting to feel much better again. As Tony says, whilst it isnt curable, there are so many treatment options available and research is moving on all of the time so lots of reasons to keep positive. There is the infoline you can use too if you need any more support on 0800 980 3332 and the forum are here for you. Keep us posted and good luck with the treatments. I’m sure your consultancy team will take very good care of you. x

[hendaz68Participant]

Hi Suzi
Sorry to hear about your diagnosis. I am 53 & diagnosed with Myeloma in November 2021 after been diagnosed with coeliac disease.
I have just completed 6 cycles & now waiting for hospital dates for my stem cell treatment.
Keep positive all the way throughout if you can & also have great family & friends around you for support. Along with the Myeloma forum you will get amazing love & support as well.
I hope everything goes well for you.
Take care
🤜♥️🤛
Peter

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