[davidainsdaleParticipant]

Hi Colin

Don’t know if you have seen any of the Myeloma UK webinars but there was one on `Maintenance Treatment and Myeloma’. You can find it on this website by typing in Webinars into the search engine which will then direct you to Youtube. This may answer some of your questions. The other suggestion is to maybe speak to someone at a local support group.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Susie

As Ann says, I don’t think it is automatic, just because you have MM. You need to make the case, for me lack of stamina, fatigue from the chemo and spinal damage limit my mobility, particularly towards the end of the day when I get tired. Your specialist nurse,local Macmillan centre or benefits advisor should be able to help you fill the form in and,or provide a letter of support.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Susie

I’ve also noticed a trend towards Facebook, personally I prefer the MUK discussion forum for the more formal stuff, not least because it has a good search engine if you are looking for something in particular.

Glad to see Andy is still doing well.

All the best

David

[davidainsdaleParticipant]

Hi

From what I have seen on the forum, skin rashes post stem cell transplant are not uncommon. My own theory is that the bugs which are ever present start to take advantage of the body’s reduced immune system. Two years on and I still suffer periodically. It comes and goes. I find that epiderm which you can buy over the counter at the chemist does seem to have a calming effect.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Val

It seems to be very easy to pick up bugs after having treatment for myeloma, presume that the immune system takes a bashing. Once you have a bug then it takes a long time to clear. People say that planes are a good place to catch these bugs and infections, particularly on long flights – don’t know if it is true or just rumour. Hope things improve soon.

David

[davidainsdaleParticipant]

Hi

I would support Jan’s advice, I had a nasty cough and cold bug over January and February which took a good few weeks to shift, nothing life threatening but has left me feeling washed out. Why take the risk of catching something when young family are likely to shake it off in a few days anyway? I think having MM and the treatment makes on more prone to catching these bugs. Also, I wish some members of the public on trains and buses would learn to use a tissue rather than sneezing and coughing over everyone else!

Hope this helps.

David

[davidainsdaleParticipant]

Hi Les

Hope all goes well with your Stem Cell Transplant. I had mine 2 years ago in Liverpool. I was out in just 16 days and looking back probably had a fairly smooth run through the treatment, up and dressed every day and managed to avoid any mouth problems. The advice on this forum to suck ice cubes or lollipops when you have the melphalan seems to work well.

I had my treatment at 60 years old and prior to diagnosis was reasonably fit and active. I was surprised how long it took me to recover from the stem cell treatment, certainly a couple of months, even now fatigue and stamina are still issues for me. It helps that you have the summer to look forward to and get and about. Just 2 degrees and heavy rain/sleet outside as i write this from the North West!

Hope this helps.

David

[davidainsdaleParticipant]

Hi Nippy

Sorry to hear that your sister has been diagnosed with MM, it can be a very difficult time at the beginning. Jan’s advice above is absolutely spot. I followed a similar path myself, diagnosed at 59 radiotherapy, chemotherapy and then stem cell transplant. Three years down the line quality of life is much improved.

I would recommend asking the helpline for some of the booklets which are relevant, they are really helpful. Also taking to other patients can be very supportive, there may be a Myeloma support group near to where you live?

They say Myeloma is a very individual disease and that it is a marathon not a sprint.

Hope this helps.

David

[davidainsdaleParticipant]

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

[davidainsdaleParticipant]

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

[davidainsdaleParticipant]

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

[davidainsdaleParticipant]

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

[davidainsdaleParticipant]

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

[davidainsdaleParticipant]

Hi Graeme

Good luck with your treatment, hope all goes well.

David S

[davidainsdaleParticipant]

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

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