Hello Mike
I recognise many of the side effects you describe, a bit light headed if i get up too quickly, irregular heart beat occasionally and chronic fatigue as well as skin problems which I think may be fungal infection. All of these are post stem cell transplant and probably part of the baggage which comes with Myeloma. Nothing too problematic but I think the secret is trying to stay as fit and healthy as you can – this long spell of wet and windy weather we are having in the North isn’t helpful though.
David S
Hi Shelagh
Sorry to hear that you and your husband are having a rough time of it at present.
I started with MM in 2013 and it was about 8 months for me post diagnosis before i met anyone to talk to who had Myeloma, and as you say it can be a lonely place to be in. I too had similar back problems, unable to move for about six months. Luckily the radiotherapy and CTD worked wonders and now have a much improved quality of life.
You may remember the old BT advert on TV – it’s good to talk. I have found attending the patient information days organised by Myeloma UK particularly helpful. You can talk to other patients and the medical experts in a very informal way with no pressure on time. There are also local support groups which may be able to help. The staff on the MUK Helpline are always very supportive and well informed.
Although they say Myeloma is a very individual disease there are likely to others who have shared a similar journey.
Hope this helps.
David
Hi Magic Moments
Sorry to hear that your husband is having a bad time of it at present.
There is plenty of help and advice available, the specialist nurses on Myeloma UK Helpline are really helpful and knowledgeable. There may also be a local support group in your area.
Your story is not dissimilar to my own experience, emergency admission due to high calcium,spinal cord compression and fracture. First diagnosed at 59. I could barely move and was wheelchair bound for six months. I have shrunk by 4 inches due to spinal damage. We have a downstairs toilet which I renamed the torture chamber, for obvious reasons! In my case the first priority for the medics was to tackle the bone damage and spinal cord compression, before getting started on the myeloma.
Radiotherapy, chemotherapy and stem cell transplant followed in quick succession. It is a slog but my quality of life has improved beyond my wildest expectations when I was first diagnosed with MM, so hopefully for you there will be light at the end of the tunnel.
I have met a number of other patients at various Myeloma UK events which broadly similar stories, so don’t feel that you are alone on this journey.
Hope this helps. Good luck
David
Hi, sorry to hear that you have been diagnosed with MM. Hope your treatment goes well.
The long delay between onset of symptoms and final diagnosis seems to be very common, 6 months in my case due to back pain and fatigue.
There is plenty of support,information and help available for myeloma patients. The Myeloma nurses on the helpline are really helpful if you have any queries and there may also be a local support group in your area.
I found that talking to other patients who had had similar experiences and treatment to be very beneficial.
Hope this helps.
David S
Hi Dino
Good morning from Merseyside. Sounds like you are doing really well. The best advice is to do what you are told by the medics. They have seen it all before and are there to look after you.
I had my SCT just over 18 months ago and am doing really well now. Just back back from a few days in Galway,Ireland and the Wild Atlantic Coast. When I was in hospital I tried to set some realistic goals of what I wanted to do when I recovered. At the time a spot of gardening or a drink in the pub would have been fine.
I found the lack of sleep caused by staff coming in every few hours to carry out their checks the worst part and was glad to get home to my own bed. One consolation was that I had a view of the River Mersey and could watch ships going in and out of the port – funny what you remember!
Hope this helps
David
Hi Graeme
Good luck with your treatment, hope all goes well.
David S
Hi Pav
Sorry to hear that you suspect that you may have MM. First signs for me were a bad back and tiredness. Like you I had elevated calcium ( emergency hospital admission ) and high protein levels.
It is probably a good sign that it has been picked up early.
There is plenty of advice available from Myeloma UK either on the phone, booklets, support groups or websites.
Hope this helps.
David
Hi Susie and all
I notice that the BBC News website is reporting that the breast cancer drug Kadcyla is back on the list after Roche reportedly cut its price.
As you say, it all seems to come down to money. What seem odd is that if NHS England takes a specific drug off its list then the drug company presumably gets no revenue from this source once a drug is de-listed, in which case you might think that some ( reduced ) revenue is better than none? Better a bird in the hand than two in the bush.
Maybe my home economics are too simplistic?
Hope this helps.
David S
Hi Andy
So glad to hear that you have have pulled through and have a recovery strategy sorted out. It really sounds like you have been through the mill with this one. Hope you are back to full strength soon.
More importantly you have your priorities sorted out ie the beer!!! I discovered Purple Moose brewery in North Wales recently during a trip to Aberdaron. I can thoroughly recommend.
I have a theory that Adnams Broadside kills all known germs – I hope it has the same effect on Myeloma, so I keep drinking it!
All the best
David S
Hi Scott
I experienced a lot of fluid retention around my body during initial treatment with CTD which took some time to wear off, this caused the pressure in my eyeballs to increase which was picked up during an eye test, but I didn’t experience any vision problems. My consultant said that it was due to the Myeloma treatment and after a few months the pressure returned to normal.
Reagarding dizziness, after my stem cell and other treatment, sometimes if I have been sitting for a long time eg train or bus and get up too quickly I do feel a little light headed for a short time but it soon passes. Never had this problem before diagnosis.
The experts on the Helpline may be able to give you more advice.
Hope this helps.
David S
Hello Gordon
I can only support whole heartedly your comments about the value of Patient and Carer info days.
I have been to three now at Manchester, Cardiff and Edinburgh and have been surprised at how much I have learnt at each one.
I was diagnosed in 2013 and it was more than 6 months before I spoke to anyone who had Myeloma and this was at one of the patient days. For obvious reasons, it is very difficult to speak to other patients in the hospital clinic, so isolation during treatment is one of the hurdles to overcome.
Hope this helps.
David S
Hello Everyone
We have now firmed up on the arrangements and the first meeting of the West Lancs and Sefton Myeloma support group will be held on Tuesday 5th January 2016 at 2.00 at the MacMillan Living Well Centre in Southport.( see http://www.southportmacmillancentre.org.uk)
Details are on the support section of the Myeloma UK website.
With the help of my daughter I have also set up a Facebook page for the group for the benefit of those who prefer to use social media. ( I am afraid that I am still a bit of a luddite so far social media is concerned.)
Hope this helps.
David S
Hello Susie
The flu jab is just one of a long list of inoculations for those who have had stem cell transplants in order to build back the body’s immunity to all the childhood and other bugs which the treatment affects. I have got used to having a bruised arm. Now I know why babies cry when they have their jabs!!
Just had mine last week for the second year, no really adverse reaction just a bit achy for a couple of days. Worth it if it works, that said, last year’s jab was said to be not very effective against the strain of virus.
Hope this helps.
David S
Hi Roseanne
Hope all goes well with your mum’s stem cell transplant.
I had my transplant 18 months ago aged 59. All went well but I was quite tired afterwards for a few months.
They do say that everyone’s experience is different and for me boredom was never an issue. The medical and support staff are in fairly often and there were times when I felt tired and just wanted to doze.
The hospital may have a leaflet explaining what to take in and what not to bring. I found a small portable radio and earphones useful and of course a mobile phone and charger to keep in touch with family. Family photos and drawings from my young grandchildren also helped to keep my spirits up.
The ward team should be able to answer any specific questions about your mum’s stay. They are the experts and are there to help. Don’t be afraid to ask.
Advice is also available from the Myeloma UK helpline and there may also be a local support group.
Hope this is helpful and that all goes well.
David S
Hi
The advice is always to speak to the medical experts or the Myeloma helpline if you have any concerns.
Your not alone. Lack of mobility seems to be a common side effect of Myeloma either due to bone damage, problems with the spine and spinal cord, and muscle weakening as a side effect of the medication.
I had all three when first diagnosed but am now mostly sorted and enjoying an improved quality of life.
Hope this helps.
David S
