Myeloma would like to chat

Living with and after blood cancer
21

Thanks @Erica - will do!

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Hi’ all, just logged in and saw the post and thread re: Myeloma which seems to fall within a less common sphere. I currently find myself within the MGUS/ smouldering categorisation, with numerous things happening to my body which could just be coincidental BUT we all know our own bodies and a disease that is so individual is hard to categorise.

Labelling anything “asymptomatic” by those without the condition merely adds to the stress and ignores what for many are possibly linked symptoms. Being able to speak to others with the same condition “Myeloma”, albeit its a sliding scale of three conditions I feel would help many who may feel as I do at times. Where do you go when technically your condition doesn’t quite fit within a support group due to the way this condition is broken down and is only classed as a cancer (Active myeloma) when end organ damage is reached. I wonder whether applying for health insurance would class it that way?

It seems that Myeloma is sub categorised etc in the way it is for reasons surrounding “watch and wait” and the efficacy of no treatment in that any treatment would be worse that how you feel without treatment with no increase to overall survival rate in the event of any future further progression.

My first post in ages as normally I type then delete before posting for the reasons stated !

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Hi @Shaka, I cannot comment on the medical issues you raise and I am not medically trained and so it goes over my head.
I felt really sad when I read the last line of your post that you normally type and then delete before posting. I would like to hear more from you and how it feels to have numerous things happening to your body that could be coincidental or not. It sounds quite a frustrating but fearful place to be to me.
We are here to support you and if you would like to talk you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
Take care.

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Hi @Shaka, I’m so glad you posted and are sharing your experiences. I echo everything Erica says. Hopefully now you’ve posted you’ll keep posting :slightly_smiling_face:

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25

Hi Erica/ Nichola75 and of course all others on the Forum.
I’ve always been what I would term a strong and self contained individual and feel more a frustration with my condition/s than ill. I suppose to some extent the fact that my own and certain conditions don’t quite fit in a box (us humans seem to like to put things in boxes) doesn’t help the situation.

Im fully aware and of course accept that “watch & wait” is a more fortunate position to be in and as such I should not really complain which I don’t. However, for me it does make it difficult to feel at ease in posting but occasionally have done so maybe hoping that people in a similar situation can feel they are not alone and this more so in the midst of this pandemic.

I do hope that anything I have said has not offended anyone.

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Hi @Shaka, I don’t think there is anything in your post that would offend, I have found this a very supportive forum.
I believe a lot of us on this forum would term ourselves strong and self contained but this disease seem to turn our world and emotions completely upside down. I think it is something I just cannot control and what I thought was mapped out for my life is up in the air.
I was diagnosed in 2003 and it does get easier being on watch and wait, but I still get very anxious when I feel another symptom or before, during and after medical appointments. I also feel fatigued if I overdo it emotionally, physically or practically and I don’t deal well with what personally stresses me well.
It is brilliant that you support other people on the forum, it is so important so keep posting and take care.

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Hi again. I find watch and wait extremely difficult and completely understand e we gets you are coming from. I love sharing on here because so many of us experience the same thoughts and feelings. Nothing you said had offended at all!

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28

Hi all, How have you all been getting on over the last few months?

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Hello together
The last post is a wile so I want to ask you what therapy was the best for you or what you do to handle the myeloma.
Would be appreciate to hear son from someone.

Best regards Sandro

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30

Hi @Sandro Great to hear from you.
Very good question, and when I reread your question again I realised I think I had got the meaning wrong.
I cannot help with medical, treatment therapies for myeloma.
However I did find that counselling therapy has helped me upon occasions and I find CBT (cognitive behavioural therapy) is best for me, those coping skills I sometimes need.
I hope others can help you with treatment therapies.
Look after yourself and please tell us the reason behind your question.

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31

Hi Chris, i had mguss for 3 years which developed into myeloma in January this year.im 5 weeks post Stem cell transplant.
How are you?
John

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A great big welcome to our forum @JE1963
How are you now?
I look forward to hearing more about you.
Take lots of care of yourself

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33

Hi John
I was diagnosed with myeloma in December 21 and am three weeks post stem cell transplant I’m good. Just getting through the twice weekly appointments at the hospital for bloods.
Monique

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Hi Monique,im 6 weeks post transplant tomorrow and on fortnightly hospital visits.How is your recovery going?

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Hi
My recovery is going well so far. Body still trying to decide if I feel hungry or nauseous. Still tired but persevering with doing a little and resting. How are you doing?
Monique

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Hi,im over the nausea and my taste buds returned 3 weeks ago so appetite is good and gained the weight back that i lost.My biggest issue is aching joints and muscles especially legs on a morning. They feel like ive ran a marathon most days.The leg aches started atound cycles 3 and havnt stopped although its mainly on a morning. Have you had this?

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I had the ache in my legs at the very beginning it was awful it felt like my bone was shattering in my thighs. I had that for a couple of weeks but eased when I started oramorph. Then it disappeared thankfully. I’m sorry your still feeling it. Hopefully yours will ease soon.
Monique.

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Welcome @Chris-2 . I get pain too in my hip . Diagnosed March 21 awaiting my own stem cell . On carfilzomib treatment in the interim 2 x weekly . In my 10th cycle . I have neuropathy fingers and toes and lips feel like I’ve been burnt or stung by a bee :flushed:. Tiredness and fatigue and weight gain due to steroids . I pop on here now and again but always willing to share or encourage . Keep in touch .

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39

Hi Mayo,I had rib pain in my ribs starting in October last year while i was in mguss stage which basically confirmed the progression to myeloma. Once my treatments started in February the rib pain had spread to both sides,however by may it has totally gone.My leg pain seems to be part of the fatigue we get as my consultant doesnt fuss over it just mentions light excerise only so possibly me doing to much but cant help it when i feel good.Guess its a bit of a double edge sword.
Have you got a date for your Stem cell transplant yet ?

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I’ve had bone pains in my back, legs and shoulder fairly regularly ever since my treatment even though I’ve been in remission for over 3 years now. I’ve just got used to it now and resigned myself to the fact that I will never be a world class athlete :slight_smile:

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