Tagged: Peer
This topic contains 18 replies, has 8 voices, and was last updated by 
richfs 2 years, 1 month ago.
Hi, I was diagnosed with Myeloma around 5 weeks ago, no thanks to my GP surgery. I initially went to my GP with severe chest and back pain, she prescribed Codamol for the pain and noticed my BP was high. I was already on BP medication so she doubled the dose, I had to return a week later for bloods because of the medication change. I never heard anything for 3 weeks then I got a call from the GP receptionist to tell me that the doctor wanted to see me re my bloods but it wasn’t urgent and booked an appointment for me a week later. When I saw a different doctor he apologised for the very bad care I had been given and told me that my sodium levels were so low that they were at a critical level and I should have been seen as soon as the blood results had come in. He referred me straight into hospital and then things started to get much more professional.
By the end of the day they had done in depth blood analysis, the following day I had a full MRI of my spine, chest x-ray and CT scan of my neck by lunchtime. That afternoon they gave me the bad news. I have 3 compressed vertebrae, further x-rays show damage to the bone in my left upper arm, I’ve also had a marrow extract. I’ve since had 2 x 4 day bursts of steroids, a 10 hour saline drip to thin the blood and my chemo started yesterday.
I have nothing but praise for the staff at both hospitals I have been attending, very quick to diagnose, totally informative all the way and quick to get me onto a treatment schedule. The strange thing is my BP has dropped down to “normal” levels despite having stopped taking the BP medication, which makes me think that this has been mis-diagnosed from the start.
Anyway, I’m 65 and in reasonable good health otherwise, the Consultant says my prognosis is good but I’ll cross my fingers, stay as positive as I can and hope that I respond well to the treatments. Both my wife and I are retired so we can concentrate on dealing with this without any other distractions. Obviously it came as a shock to us both, but after a few weeks we have accepted the situation and now it’s really just a case of getting on with it. The information on this site and reading others stories has helped to alleviate a lot of the fears I have and I feel a lot more positive about the future than I did a few weeks ago.
I was extremely anxious over the week leading up to the start of my Chemo, but after the first treatment yesterday I feel much more relaxed about it as it went well, no allergic reactions so far and very little side effects. It is early days but at least that’s a good start. I did wake around 4am this morning feeling a bit nauseous but took an anti-sickness pill and was feeling OK after about 30-60 mins.
The treatment I’m on is 2 injections under the skin of Daratumumab & Bortezomid, twice weekly on the Bortezomid. I take Dex with the Daratumumab on the day and the following day. I’m also taking Thalidomide pills every day for the length of the Chemo sessions. Four cycles, each 4 – 5 weeks long, then a rest of around a month followed by 3 – 4 week spell in hospital for intense chemo and stem cell harvesting and injection.
All going well and I’m in remission, they will put me on a bone repair treatment , the consultant was fairly confident that the damage can be healed back almost to how it was before, so fingers crossed.
Welcome jiffie to this exclusive club no one wants to belong to.
It’s always totally and profoundly shocking to get diagnosed with a blood cancer few of us have ever heard of, and the “incurable” term is totally preoccupying for a while. But the reality is that myeloma is more of a chronic disease for increasing numbers of us, as new treatments are being approved regularly. Your 4 drug induction treatment is a good example- a very new combination, one that bodes very well to give you a longer period of ‘remission’ or inactive disease than we existing patients are experiencing. I have been to a local myeloma support group today- we have one very active member who has had myeloma for 18 years so far, another for 11 years, another for 9 years. Statistically more of us diagnosed in more recent years will have these long lives ahead of us. Even if you have some side effects during your treatment, once treatment is over, you are likely to feel much, much better than you have for some time. To use an Olympic analogy, myeloma is not a sprint, nor even 1500 metres, but more like a steeplechase, with periodic difficulties to overcome, but in between times life can be good, or even very good.
Hi Mulberry, many thanks for your reply, it was very reassuring and informative. I have been doing a lot of reading re this condition and as you indicated there has been a lot of advances made in available treatments over the past few years which bodes well for us new members of the club!
I had a wee bit of a reaction on the area around the Bortezomid injection a few days later, nothing too bad, an area of skin was bright red & hot to touch but was not sore or itchy, it has more or less faded now. I informed my team and they said it was to be expected and were not overly concerned.
I go for my 2nd treatment today which is another Bortezomid injection and both injections again next Tuesday.
Thanks again for your reply which has alleviated a lot of the concerns I had. I will be looking at some point to join a local group to share experiences with others who have this condition.
Hi to everybody,
Have just been diagnosed would love to chat to somebody.
Hi Samella, sorry to hear you have also been diagnosed with this condition, it came as a total shock to me and I would guess it was for you too, hard to come to terms with. I sort of knew there was something seriously wrong but was reluctant to admit this to myself until the diagnosis.
The good thing for me is that I have been lucky that there is an excellent NHS setup in my area which deals with patients with all variants of cancer. As soon as I was diagnosed the guidance and very quick time they got me onto a treatment schedule has alleviated the anxiety I was feeling. I hope that you have had a similar response where you are.
It has helped finding this site and reading others experiences as a Google search of the condition brought up a very negative and depressing prognosis. From all accounts the prospects of a decent length of remission with follow on treatments when it returns are very good, especially as there have been a lot of developments over the past few years with new treatments being available.
I had my 2nd treatment on Friday and was talking to the nurse about this, she said they had started using the treatment I am on about a year ago and they have been getting really good results using it. In particular she said the addition of Daratumumab has made a big difference in the results they have been getting.
So there are reasons to remain positive, though I know it’s not going to be an easy road to walk, if the end result is a decent length of remission then it will be worth going through it. I know there will be dark days, I’ve already had quite a few of them! So just taking it a day at a time and grateful for the support I’m getting from the cancer team and my amazing wife who is going through this with me.
Anyway, I hope you are coping with things, would like to hear your story and how you are feeling about it all.
Samella,
Like all of us in this club the diagnosis comers as a shock. It is good that you have reached out through this forum where you will receive support from people who are going through or have been through treatment.
Tim
Welcome Samella. There is a real fellowship between myeloma patients which honestly makes it a less lonely experience. None of us wanted or expected myeloma in our lives, but it is possible to come to terms with it, to forget about it at times and for life with myeloma to be good and to be enjoyable.
Hi Samella, welcome to the Forum. Since my diagnosis I have found the support and information so valuable. It has helped me to remain positive and develop an understanding of myeloma, which has been great and supported me through the challenging times I sometimes have experienced. I hope you find the Forum as beneficial as I have.
Best wishes,
Terry S
Thankyou so much for the kind responses,I am pretty down just getting head around it.
Sure I will find some comfort on this forum.
Thankyou Again and will keep in touch.
Love to you all.
Xx
Hi jiffie, can I ask where you are getting Dara with VTD upfront on the NHS? Or is it private?
Tx!
Hi Sachbarnes, it’s on the NHS, I’m in Fife in Scotland. The main centre for cancer here is based at the Western General in Edinburgh, this seems to be where all the cancer cases are discussed by a team of consultants who then pass on their recommendations to the local teams to take forward.
I’m currently getting outpatient treatments at the Queen Margaret hospital in Dunfermline, the last part of my treatment, stem cell transplant, will be at the Western General in Edinburgh.
Ah thanks. Yes Scotland is ahead of the game, approved there in January, and has been rejected twice in England and Wales since. All the best!
Hi, yeah I saw that at the time, I thought it had been approved recently though in England and Wales, maybe it was another cancer treatment and I mixed them up.
I found this, looks like a decision on use for new patients may be taken Jan 2022. This is conditional on the patient being eligible for a SCT. This is the same as it is in Scotland atm and was introduced here in Jan 2021. So fingers crossed for all you people south of the border that they approve this.
Good evening everyone.
I am new to the Myeloma gang.
I was diagnosed with Myeloma on 8th November following being diagnosed with coeliac disease (gluten free for life) 🤢 & anaemia in July all of this year. Since my coeliac diagnosis I was still feeling tired & lethargic & my blood levels were dropping. So the consultant sent me to see a haemotologist who carried out further tests & bone marrow sample & the rest is history. I’ve just completed my 1st VTD cycle & touch wood apart from losing sleep whilst having the chemo (steroids) I think waking me up at 3am 🥴.
Hopefully I can make friends along the way & share my story with you all.
My 2nd cycle starts 14th December to 24th December so fingers crossed for Christmas day.
Take care everyone.
Peter
You must be logged in to reply to this topic.
