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I am new to this! My hearts and thoughts go out to all you fellow patients!
I have spent some time looking over the forum, reading many conversations which I have found very helpful and informative.I have always been sceptical about joining forums but from what I have read most people on this are honest and to the point extremely helpful about all things within the scope of Myeloma!
I was diagnosed back in September with MM, I am on a course of VTD and in the first couple of months suffered the varying symptoms(swelling ankles, hot skin, hands,feet, shakes, unsteadiness etc. I put this all down to mild peripheral neuropathy), but the symptoms seem to have settled down. I am on my sixth cycle now and the worse symptoms seem to be the headaches and blurry eyes. Symptoms seem to be up and down but appear worse, as today, a couple of days after the steroids! I must say that the most important advice I was given was that it is best to keep a diary of your days on how you feel and to also discuss with your nurses how you feel.
I am due to see the consultant for the SCT this week.
I have always been an active person and went back to work but lasted only 3 weeks due to the stress and headaches(I put this down to the work load and working on a computer, it just became too much, so screen time now for tv, pc etc has all been minimised!) . I feel frustrated and fraudulent at times, but the most important thing is your health. The whole process is a rollercoaster of emotions and symptoms. People that I have talked to always say that the hardest thing to deal with is the mental side of the process, this will be during and after the SCT!!
Be strong!
During these times the whole worry of what we are going through is compounded by the dreaded COVID, but from what I understand from these messages, we should be able to be given the vaccine.
I am considering signing up onto the RUDY scheme, is this worthwhile and genuine?
Wishing everyone the best
Hi & welcome ptlelec. The RUDY study is most definitely genuine, Myeloma UK is one of the affiliated organisations. Taking part will not help you personally, but provides a one stop shop access for researchers to a group of patients willing to complete study questionnaires concerning health, quality of life etc. In time this should positively affect research, treatments and policy for all Uk patients with rare diseases (& hopefully myeloma specifically). I’ve been doing this for some time. It is little effort and feels like it’s an easy thing to do.
In terms of headaches and eyesight problems I believe dexamethazone is the acknowledged culprit. Quite a few patients develop cataracts whilst on treatment, which are later successfully removed and vision restored. Many of us find that vision deteriorates faster than it was doing before treatment. Without COVID the advice was to have regular opthamalogical check ups. I know my sight went on deteriorating after dex (I’m 2 years post dex, post SCT and on lenalidomide maintenance) & I intended having another sight test nearly a year ago, delayed due to COVID and personally I haven’t come out of lockdown since, so I am still waiting for it to feel safe to get a better prescription. Good thing is I don’t think my sight has gone on deteriorating further.
As you say it’s easy to feel fraudulent with this disease, for a start some of the symptoms we experience are vague and creep up, so become assimilated into our lifestyles. My consultant says “fraudulent” and “boring results” are the best signs!
I had a SCT, which I know isn’t the route for everyone, but afterwards, settled into a routine with maintenance, I do feel psychologically much better, that I’ve assimilated myeloma into my life. Health appointments no longer play a central role & I’d really be getting on with things if it wasn’t for the pandemic. But the pandemic is our generation’s equivalent of a world war, and one day like all things, it will end.
Yes indeed, many thanks, it just takes so much getting used to!!
I’m now on the countdown to my SCT, just waiting for letters and confirmation between hospitals.
So far I can’t say enough about the NHS and the service they are continuing to provide in these difficult times!
Just pushing towards the light at the end of the tunnel and hen it’s all over……?!
Back to normal👍
We have to be told of all the potential problems with SCT, it would be unethical not to warn people. However the majority of us have only have a few side effects, only a minority have many, a tiny minority have serious ones and a tiny minority have none. (Including this year, someone from my local support group….no nausea, sickness, diarrhoea, nothing- I’ve never heard of anyone being warned that could happen!). Certainly whilst the SCT experience puts a few people off repeating it, most of us are willing to go through it again if we get the chance, a bit like child birth?
My SCT experience wasn’t nearly as dramatic as I’d supposed. I was sick 3 times in the course of 14 days, only felt nausea at these times, had an odd appetite but could always eat something. I had complete fatigue days 9-11 so just slept which was alarming for family, but I wasn’t in pain. The biggest nusiance was diarrhea, but on day 12 I could literally feel myself getting better hour by hour, I have never felt so elated. I was discharged day 14, readmitted 2 days later with a virus (HPI) I’d picked up (& ironically sickness) but I didn’t feel ill ill, and in effect I convalesced in hospital for 5 days.
My neutrophil and white blood counts, which were within normal limits prior to the SCT have never fully recovered. I wasn’t expecting permanent damage to the bone marrow, which I seem to have sustained, presumably the melphalan. However I’ve had no infections since the HPI virus, which I recovered from as quickly as someone without a depleted immune system.
Hi ptlelec,
I was so interested to read your post because I had blurry eyesight while on DVD last year. I was trying to write a dissertation and I just couldn’t read. It felt as if the whole world was behind a sort of steamed-up window and I kept dropping things/being very clumsy as well. I was fortunate not to have the headaches, though. I was puzzled because there was nothing about blurry eyesight on the long list of side effects that I was given prior to the treatment although I did come across it on an American website somewhere.
The good news is that in the gap between my treatment ending and going in for my my SCT, it improved greatly and is pretty much back to normal so I was able to read in hospital, which was very handy.
I hope all will go really well with your SCT. I had mine (second one) in July/August 2020. It has given me ‘Stringent Complete Remission’ and I feel great! The nurses and medical team as a whole were superb. I’m so glad I was fortunate enough to be offered the opportunity and to have had it done.
All the best,
Rachel
Many thanks, I start my home injections next week in prep for the harvest(first time of injecting myself but hopefully should be fine!!)
The reality is now happening but must keep focused on completing the process, recovering and then getting back to work!!
How long do people normally take before they feel fine to go back to work I’ve been told between 2-3 months!??
Good luck with those injections! I was terrified at the very thought of injecting myself, but with the aid of the informative leaflet that I was given, and by taking myself to a quiet place where I knew I wouldn’t be disturbed or rushed, it was actually fine and really not painful.
After my first transplant in January 2013, I did a staged return to work (3 days) at the end of that April and then went back full-time in September. It probably depends a lot on what kind of work you do? I absolutely loved being back at work until February 2016, when I caught pneumococcal pneumonia. It was during the junior doctor’s strike and I didn’t get much advice – or real comprehension of how ill I had been – so I went back to work two weeks later and just couldn’t get my energy/efficiency/ /accuracy/decision-making up to speed again. I ended up taking early retirement the following summer.
I discovered rather too late that Macmillan publish a very helpful free document ‘A Guide for Employers.’ If you haven’t already done so, it might be worth getting one and reading it and also handing it to your employer (unless you’re self-employed). It sets out what is reasonable to expect from yourself as well as from your employer. I understand that ‘frustrated and fraudulent’ feeling but at the same time, so many people must return to work during or after cancer treatment and that is what the Macmillan guide is really there for.
Things may be rather different timing-wise with the Covid situation, though.
May everything go really well with your harvesting. They collect the cells in little bags now which mean they kill fewer off in the defrosting process (I think) so that all those cells you work hard to harvest will be given back to you. It’s definitely worth it.
I think the above is the link to the Macmillan document.
Rach15
Many thanks
I have just undergone my SCT harvest yesterday and had the worst headache. Headaches and bone pain are something that I have been experiencing in the last 3-4 months. At this point I must point out that each person is different, so side affects will be different.
My consultant at my transplant hospital recommends that I should have an MRI after my procedure, so that should show if there are any issues in my back.
I must say that we must trust in the professionals and follow their guidance.
I have never been a great one for the technical medical side of things.
We hope to be in the transplant stage in early March.
Away from this I would like to ask if anyone has tried CBD oil/capsules?
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