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Hi everyone, I sat wondering what to write, still in the fog of how on earth have I got here, from diagnosis at Christmas last year, to petct at the Marsden and a million other tests and 2 bone marrow biopsy’s. I am on VCD twice a week and have been told I will have a stem cell transplant at the end of the chemo. I am in the last week of round 3 0f 6 and I feel like it is defitinetly a marathon. I have been reading some of the amazing stories here and it is heartwarming to see how well some people are progressing and that a longevity of remission is possible. I was releived to see that there were people here who would truly get how I feel and the warmth and support generated here to make all feel welcome and listened to. The positive attitude that is generated here for supporting others is a blessing and I am grateful for the companionship on this marathon journey.
Thanks for listeneing
Frances
Hi Frances,
Welcome to the forum. It’s never a good time to welcome new member as it means another have our condition. But here you will find a network of patients and relatives and careers. I am pleased to hear that you are on track with your treatment and that SCT is on the cards.
Just as background: I was diagnosed in August, started treatment in September and next month will be having SCT. It’s been a roller coaster: nerves, emotions, pain feelings but now it’s time to look at the next phase.
As you have said, it is a journey and a marathon at that. I wish you all the best with your treatment.
Hi Adrian, Thank you for your welcome, I just felt I needed to get in touch with people who recognise and understand the condition that we have and listen rather than try and fix and make better. We all understand that we have an individual condition and no 2 of us have the same. It has been hard to get to this point of acceptance and to be able to live with a condition that they can not cure only manage, still every day we get up and keep going. I wish you all the best with your on going treatment and hope that you can get through it with the same courage that has got you to this point so far.
Hi Frances, Sorry that you are here but am sure you will “handle” the new you/life with aplomb. You have done well to gain acceptance in a short while – I am about 6yrs few months since diagnosis and I vividly remember, but try not to dwell on, those early months where I felt I went through a grieving process for me and my life/future – bleak days. I am 5yrs 3 months post SCT and still drugs free. Life is good but it has taken such an array of emotions and mind sets to get here. The focus on SCT as though that would be the end of it but then the realisation of a new mindset to “watch and wait” and trying to lock MM in a cupboard. From researching/devouring everything about MM to now just keeping abreast of things – from MM constantly being in the forefront to it still being there but almost like an old friend now and with ease. I have always felt that the only way to live well with this is to recognise mindset is everything – from mindfulness to finding your own coping strategies that work for you. To this day I have a small book of inspirational quotes in my bag that I used to refer to to get my head round it all/focus on not wasting energy worrying to now just enjoying them as a prompt to stay in the light. It is all doable depending on the cards you have been dealt – or as one of my quotes pointed out “it is not always the cards you have been dealt but how well you play them” – I recognise that we cannot change disease biology but we can choose how to live life well inspite of our hand dealt. One of the good things I got from mindfulness is recognising that we are solely in charge of our emotions and if I am upset by something trivial it’s because I choose to be upset – often the easiest path to follow. Will stop my rambling now – Mm today at the forefront of my mind as just had my 4 monthly consult – all is well still but your post invoked in me a trip down my mental memory lane. It is a rollercoaster ride for sure but one where you will start to know the twists and turns and when to brace yourself and when to let go. It is all doable and I live a good life which has also involved changing priorities and goals for the better.
Take care,
Rebecca
Hi Rebecca, Thank you for your open and honest message, I appreciate and am grateful for your contribution. I am sorry that you were reminded of a darker time and grateful that you have shared some of your mindfulness stratergies with me. I leave myself notes for the morning and my breakfast time, reminding myself just to breath and relax and you know what I got up and got going and am doing the very best with the cards that I have for the day. In one way I am lucky as I already have a miriad of other incurable diseases and the amount of things that my poor body has been through that this just feels now like pop it on the pile and we will get to it. There are days when the stairs look like mounting the Eiger and every thing is so heavey that I have to remember to do it in steps. I guess that we all have days. Today I pottered in the garden and the sun was out and it was a great day, though Friday I was told I was not well enough for the chemo and it felt like a step back, though they now are going to change my schedule and I will have 2 weeks off and then 4 weeks of a lower dose and then book the stem cell harvest and the transplant. I have to admit that the transplant is a very scary thought.. Thank you for heads up of the stem cell being the beginnng and not the end, I agree that it is going to have to be a life change and I hope I can get the niggling itch in the back of my brain to quiet itself for a little while. I truly agree with you life is always a choice, sometimes the choices are 2 not so good choices but still we choose.
I am so pleased that you chose to share a little of your journey with me and inspire me to stay with the hope that things will change yes and hopefully for the better.
I wish you well and hope for you that your respite from this disease stays with you for a long long time in the future.
Thank you for your kindness and caring.
Frances
Hi Francis
My story is similar to Rebecca’s. Symptoms started to appear late 2012, bad back pain, diagnosed with IgA myeloma and pps of 55 three months later, then radiotherapy, CTD followed by a stem cell transplant early 2014. I lost 4 inches in height due to spinal compression and had a fairly torrid 18 months. That said, I am now over 6 years down the line and have a fairly good quality of life all things considered, but have to be sensible in what I due, fatigue is probably the biggest issue for me.I had to retire from work earlier than I would have liked but now have time for holidays and endless projects in the house. pps are creeping back up slowly so further treatment not too far off.
I would certainly recommed going to one of Myeloma UK’s patient infodays. These are very good as are the local support groups where you can meet and chat with others similarly affected. I am based in the North West near Liverpool and we have a good range of support servcies here including things like Macmillan.
Even since I was first diagnosed, there are lots of new treatments coming out so the outlook is optimistic. Myeloma UK do a great job on our behalf lobbying the powers that be to get these new drugs available for our clinicians.
As they say, it’s a marathon not a sprint.
Hope this helps
David
If you have not done so, you may well find meeting other people with myeloma very helpful (in a non clinical setting) such as at a support group if you have one locally, or at a Myeloma UK info day.
I was diagnosed 11 months ago, have been through the profound shock and disbelief of diagnosis (my only symptom was anaemia), my induction treatment, stem cell transplant and am now waiting to find out if I am in remission. Despite not knowing my myeloma status, I feel physically better than I have for some years, I feel psychologically in a good place. It has taken some months but the reverberating life shock I experienced, and the total preoccupation with myeloma has dissipated and I am looking forward to doing things that have nothing whatsoever to do with myeloma (as well as a few that have). There will be light at the end of this terrifying diagnosis tunnel for almost all of us diagnosed with myeloma. With best wishes, Jane.
Hi everyone.
Newbie to this forum….but not to MM.
I had been diagnosed a year ago with MM. I have completed all treatmeant, having Stem Cell Transplant in November 2018.
Just wanted to say that it was a year of anxiety, fear, unpleasant side effects. Now out the other end, it was do able. So to any one who is going through chemo and or stem cell transplant, hang on in there.
I have been told by my Consultant that the Paraprotien level is now at 4g/L, possibly could decrease further.(hopefully)…which I have achieved a Partial Remission. I feel very well and not on any treatment. I have decided not to worry about when this beast will raise its ugly head! So for now I’m just gonna get on, with life, full steam ahead. Hopefully to have a very long partial remission.
To all on this marathon / journey, I wish you all the best.
Hi Cazzie
Glad to hear that you have recently completed your stem cell transplant and feel well.
I had mine in February 2014 ( age 59) but like you my pp levels stayed elevated for a few months and then dropped to below detection level for about 5 years before returning and rising slowly, now back up to 10.
I hope that you find yours drop further as well.
Hope this helps.
David
Hi david,
Thank you for your reply. To hear your story was encouraging,hopeful and uplifting for me. I do hope your PPs remain as they are or decrease.
I wish you the best.
Hello, I am the partner of a newly diagnosed lady,Dawn, she is 83, I am 81 and so far she has had 1 cycle of velcade which depleted her blood sodium an is now just completing her first cycle of lendex, throughout the last month she has been having hallucinations of people who she knows but are not here, I do not know if this is typical or not, I could ignore it but Dawn will have panic attacks when she (sometimes) realises that her visions are not real. The emotional impact of her on Dawn of her diagnosis very high but her physical wellbeing has improved very much since starting her treatment. It would be helpful to know if this is not an unusual reaction to the diagnosis of myeloma.
Dear benefit, I have never taken lenalidomide and dexamethasone (lendex)but have been treated extensively with velcade and dexamethasone and I would say that the dex was the thing that caused me the most problems, insomnia, agitation ,tearfulness and disturbing dreams, however this is not the case for everyone who takes dex. I would talk to your doctor about these Hallucinations, as it may be possible to reduce your dosage. I take OxyContin for back and sternum pain and have experienced hallucinations of people being in the room and then realising that there not there but have got used to it as I know it’s the drugs and not a mental health issue. I hope this helps and please do not hesitate in questioning your doctor about this issue, remember every myeloma patient is unique and sometimes treatment needs to be tweaked to recognise this fact.
Best wishes
Kay
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