[cat170685Participant]

I rarely register to online forums, I’m more of a browser than a contributor but I think on this occasion I could benefit with speaking to other people who have been cursed with multiple myeloma.

To say I was shocked when told I had multiple myeloma is an understatement, i never thought I had cancer not alone MM – Im a 33 year old male and coming to terms with the diagnosis has been difficult. Ive just finished my second cycle of VTD chemo and starting my 3rd cycle on 15/02.

I am dealing well with the chemo, I rarely feel sick or have any major side effects except fatigue.

Not really sure what else to say, just came on here for support from others who have already travelled the road I’m currently on.

I hope to contribute a lot more as the time goes on.

[davidainsdaleParticipant]

Hi Cat

Sorry to hear that you have been diagnosed with myeloma, but glad to hear that you are coping well with the treatment.

It is generally an older persons’ disease but we have someone in our local myeloma support group who is the same age as yourself and others not too much older, so you are not alone in having to face up to it at an early age.

There are lots of opportunities out there to contribute and help put something back into the system, and places where you can get help and advice.

They say it is a marathon, not a sprint!

Hope this helps
David

[gmmaParticipant]

Hi Cat

I know it’s a huge shock to be diagnosed so young. I was 46 (Female) when I was told I had Non Secretory MM. That was last March and since then I have had 4 months of VTD and a STC which has been successful in putting me into remission. It was hard but you do get through it. Lean on the people around you as this will help a lot. It does get easier and you do get over the shock but this does take a little time.

Keeping yourself distracted helps and if you are able to keep your body moving that is good to.

g

[Anonymous]

Hi cat, welcome to a club no one wants to be a member of!
I was wondering how you got diagnosed, as at your age your not an obvious candidate for having myeloma, and it’s notorious for being misdiagnosed.
I am glad your not finding the treatment to hard going, I have finished my first line treatment and am in plateau and starting to recover physically and emotionally. If you have any questions for me please feel free to ask anything you want.
Best wishes
Cassidy

[ale2104pParticipant]

Hi Cat,

I think it’s the same as everyone else have said. This is a forum that nobody really want to be in but unfortunately this condition brings us together.

I am in my mid 50’s and was diagnosed in August 2018. I at almost at the end of 6 months (6 cycles) of chemotherapy and hopefully I will do a Stem Cell Transplant in March. In the beginning the treatment was “painful”. The main thing was fatigued and shortness of breath. I also had easily signs of peripheral neuropathy and in the first week of chemo I developed a high temperature and had to be hospitalised for a week.

I started of VTD (2 cycles) and moved to KRD (4 cycles).

This forum is good for sharing and even if its just browsing – you will find some comfort here.

I don’t even take it one day at a time – I take it one moment at a time.

[Anonymous]

Dear Adrian,
Well done on nearly completing your induction chemo, I did 8 cycles and by the end I had reached the end of my tether!!!!
I just wanted to wish you all the best of luck with your stem cell transplant, you have made it this far so hang on in there and you have a really good chance of a long period of remission and you will get your life back.
I am off treatment and in plateau and am enjoying life again.
Best wishes
Cassidy

[shaun3Participant]

Hi Cat,

Sorry to learn of your diagnosis, I count myself as a young diagnosis (I was 52 and now 53) although I accept youth is a state of mind. I suppose anyone diagnosed under the average (65) is going to feel short changed. Feeling short changed is probably a fair reaction to a myeloma diagnosis at any age come to think about it.

My treatment so far has been fairly standard; VCD followed by IRD and then onto ASCT in Apr/May 19. I’m also hoping to have allogeneic SCT straight after. I know this is seen as a risk and out of favour especially by the majority of US based experts. But it represents the only chance of a cure (difficult word in myeloma) and I’m willing to take the risk.

Anyay, I wanted to say tht myeloma is a very individual cancer and our reaction to it is just as diverse. I’m lucky to have a large family, rewarding career and lots of interests – in other words life is good. And whilst it hit me hard at the start, life continues to be good. I’m only a year in but I’ve kept working and my life hasn’t changed massively so far. I suppose I predicate things (people) more but I certainly plan for the future. And I think about the future too. I’m determined to have one!

Sending huge amounts of support your way and hope your journey is long and successful.

Shaun

#myelomawarriors

[Anonymous]

Hi Shaun, just wanted to say hello and wish you luck with your transplant, I am aware of someone who had the tandem transplant and is still in remission after three years, so it’s definitely worth the risk if you are physically up to it. I didn’t get my sct as I was deemed to high risk in the end, but am in plateau and just glad to have my body back.
You sound as if you have a good attitude to it all, I just keeping looking straight ahead and enjoy life despite loosing my kidneys to the myeloma.
Best wishes
Cassidy

[rebeccaRParticipant]

Hi Cassidy, I don’t think I’ve seen any previous posts from you and just wondering about your diagnosis and treatment/kidneys. Unfortunately my kidneys were severely damaged on diagnosis etc (but have recovered some function) but I am always interested to understand the paths/decisions taken by others with kidney involvement if you don’t mind sharing your experience.
Thanks Rebecca

[Anonymous]

Hi Rebecca,
i have ppcl myeloma which circulates in the peripheral blood and attacks vital organs mainly, hence the loss of my kidneys but no bone damage. I have finished chemo but I have not regained my kidney function and am on full time dialysis, which will be permanent according to the doctors. It was because of my kidney failure that I ended up getting diagnosed with myeloma, I had gone to accident and emergency due to bleeding from my eyes and they did a blood test and found my kidney function to be a 4%. 3 weeks of tests followed ending with a bone marrow biopsy to confirm ppcl myeloma. I am off treatment and am in plateau and doing well, no sct as too high risk. Still counting my blessing though as I shouldn’t really be here according to the statistics.
Best wishes
Cassidy

[AdrianAParticipant]

Hi Cat,
I was 42 when diagnosed, approaching 50 now. It is a shocking bleak outlook at the beginning, particularly if you google myeloma and read some of the out of date rubbish that is out there. I think this site is a great information resource, but I’d advise making lists of questions and taking them to your appointments to get answers, or call the ask the nurse line at myeloma UK.
I would describe my experience so far as “almost normal life, interspersed with periods of treatment taking over until normality resumes”. The treatment, especially SCT, can be hard at the time, but the memories fade and the return in terms of treatment free time is well worth it.
It sounds like you’re young and healthy (apart from the obvious) and tolerating treatment well, so hopefully you will get it under control and get back to normality soon.
I wish you all the best,
Adrian.

[Anonymous]

Hi Addison Adrian
It’s always good to hear a positive story about myeloma. I agree with your comment about googling, I made the cardinal error of looking up my ppcl myeloma on Wikipedia and according to them I shouldn’t be writing this email !!!
I think it’s important for newbies to read some real life stories of myeloma patients as they will get a more rounded picture. I hope you are well and would be interested in hearing about your experiences.
Best wishes
Cassidy

[bren123Participant]

Dear all,
I have high risk smouldering myeloma, on a trial but computer said watch and wait with extra tests. I take curcumin to keep pp stable.
I was diagnosed Aug 2018 and like everyone it was a shock.
My pp is steadily rising so I may have treatment soon
I just want to say, all of you seem very brave, as I am dreading treatment!,
I am very positive and I know I will live to 90!!
Keep smouldering , or everyone else be in remission until a cure is found.
I find it very informative reading your posts, so I have some idea what happens in the future .
I think myeloma must attack very kind and brave people
Bren ( girl)

[Anonymous]

Hi Bren, (girl)
Welcome to the forum and thank you for your kind words. I am sure you are still adjusting to your diagnosis and its implications, it takes time but eventually you will find the inner strength to meet the challenges you may face. The best piece of advice I can give you is to stay in the present and don’t try to fast forward to the what ifs and maybes of how your disease may progress. All myeloma patients are totally unique and information on the internet can only deal in generalities, so be careful not to place to much emphasis on what you read. Just eat a balanced diet, do regular excercise and get good quality sleep, don’t neglect your emotional well being and always give voice to your worries and concerns with counselling or here on the forum, you will find a friendly hand to guide you here.
Best wishes
Cassidy

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