This topic contains 9 replies, has 5 voices, and was last updated by 
tmcintyre 6 years, 11 months ago.
Hi, I’m Teresa, wife of Dave, age 59, who was diagnosed with Myeloma just before Christmas. He’d been suffering with severe constipation for 5 weeks so was having tests through the GP and at the same time he was being investigated for lung cancer because of a persistant cough. His GP was concerned about his protein levels and referred him to Haematology. We were not prepared for the outcome, it was a dreadful shock.
Treatment started that week with Zolendronic Acid and then Velcade a couple of days after Christmas. I have to say it was a nightmare rollercoaster but we soon got into the swing of things. My husband has a very positive attitude and is keen to follow the treatment to the letter. His brother died from the same condition over 7 years ago. We have been reassured by the team that treatment has changed quite a bit since then and apparently if you have to have cancer then this is the one to have as its most treatable!?! Also, we have met the specialist nurse who remembers Dave’s brother and the frustrations that he wouldn’t take his tablets and missed a fair few appointments so sadly didn’t benefit from the treatment available to prolong his life.
Dave hasn’t had many problems so far – a drug rash at the end of the first cycle, neuropathy starting during the fourth cycle, low energy levels and lower back pain which seems to be easing. His blood pressure dropped during the second cycle and he was near collapse so had to spend a night in hospital but tests showed nothing abnormal and he was discharged next day. His temperature went over 38 on Saturday and rather reluctantly he let me take him in to hospital again (he just wanted to go to bed to sleep it off) He was put on penicillin as soon as we got there, had another does Sunday morning and again last night as his bloods are showing signs of infection. He was due to start priming for SCT today, we are waiting for the acute oncology team to speak to his consultant to see if this can go ahead. I do hope so as he has been mentally preparing himself for this rather scary procedure.
So far so good. We’ve been told to get on with life but its hard to plan ahead as we never know whether he’ll have the energy to do whatever we’re hoping to do. We have a touring caravan and used to rally several times a year but he does not feel up to towing and with the neuropathy it would be dangerous. However, we have managed a couple of weekend breaks in a static not far from home but far enough to feel that we’ve had a little holiday.
So, that’s us. I look forward to chatting to you all especially any others in Southampton.
morning theresa. hope it helps to know most of us have been were your husband is now i was diagnosed jan2014 had 6cycles cdt then SCT in the august got over 2year remission have just finished 6cycles of vdc velcade. going to probley have another SCT soon there right to tell you how much better treatments are now theres always something coming along . you will getback in your caravan. before you know it . make little plans to look forward just about all tbe people on here do just that long weekends somewhere nice. alsorts. good luck. keep us posted on progress. xxxannlynn
Hi Annlynn,
Thanks so much for your reply. Yes it does help to know that most people have been through it. How do you feel about going through the treatment again? Can they predict how long your remission will be or is that a silly question, I haven’t liked to ask the consultant.
Teresa
Hello Teresa,
I was diagnosed in 2006 and have had 2 courses of treatment and 2 SCT since then and both of which gave me about 4 years of full remission. I am now 59 and it has just started to return. I was also very positive and found this helped and am sure the treatment I will receive this time will work. They say that although not curable it is very treatable and this is what I have found.
Best wishes to you both
Kevin
Thanks Kevin
Yes, we were told it is very treatable. Thank you very much for telling me how its been for you and its reassuring to know you are still positive. At the moment we feel like there’s no end to the treatment but I can see there will come a time when he will be in remission.
Teresa
hy. Teresa’yes you will go through stages. of drug free times hopefully which is great . my thoughts on going through another SCT. were varied like childbirth i suppose you know whats coming but your also more prepared remission is diffrent for everyone as is response to treatment. this is a very individual disease. i tell myself everyday i am a strong woman and can deal with this !!!! kevins remission longer than mine but mine probably longer than others just deal with things a day at a time. good luck. annlynn
Evening Teresa, did I understand from your initial post that Daves brother died of myeloma? Interesting, I didnt think that this disease ran in families. Sounds to me that your GP was very alert and you were given an early diagnosis. Daves initial treatment seems to have worked well if you are being prepared for a stem cell harvest. Hope that all goes well.
I was diagnosed 5 years ago by a very alert GP. My initial treatment worked very well and had a stem cell transplant, I managed 26 months of remission before it reappeared. It was 26 months of no treatment, no drugs etc we lived life to the full. The second round of treatment was deliberately slow and I had a second SCT in March 2016. So far, so good.
We all suffer temperature spikes and infections, my problem seems to be fatigue, I can sleep for England but on the other hand I have the energy to do all sorts of things.
As the carer you need to stay strong, best of luck to Dave.
oh I forgot to mention that I had my second SCT aged 72.
Regards Tony F
Annlynn, thanks for getting back to me, its a great help to learn how others cope with it.
Tony, good to hear from you. Our consultant was interested to know that Dave’s brother also had Myeloma although he initially said it didn’t run in families. The literature from Myeloma UK indicates that it might. One of our specialist nurses has just come from the research side and her ears pricked up when she heard. Perhaps the hospital will investigate that further down the line.
I agree, we think our GP was very alert especially as the lab reported that Dave’s protein levels were high but just within the normal range. She must have noticed an increase between blood tests. Considering she had never met Dave before I am very grateful to her.
Dave’s temperature has gone down but his bloods are still showing an infection so they are keeping him in hospital. He couldn’t start his SCT priming today sadly.
Thanks for thinking of me. At least with Dave being cared for in hospital I am managing to get a few good nights sleep!
Hi Teresa, I spent most of yesterday in C7 in Southampton, they’re lovely there, though the waits get tedious. In nearly two and a half years I’ve only managed 12 months remission but being on treatment doesn’t stop me staying active and enjoying life. Do what you can when you can and don’t worry about the future until it happens.
Hi Louis, we know C7 quite well. Dave has spent the last few days in Acute Oncology since I phoned the emergency number on Saturday night. Lovely staff in there too. We finally think that they have discovered why he’s been coughing for the last few months – an upper respiratory infection. He’s been on high dose antibiotics since Saturday night and is coming home later today with more tablets.
He hasn’t had much energy during the last couple of months but I think we may have turned a corner. Dave has always been an “I’ll do it tomorrow” person and I have spent the last 30 years trying to change that. I think he is finally beginning to realise that we have to make the most of each day.
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