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Hi Teresa
Nice to hear from you – I am ok. Have just started cycle 5 of vtd my pp are down to 1.5 and had my first appointment about Sct last week. Fatigue and neuropathy is still a big issue for me. Went out to lunch yesterday and exhausted today can’t do anything. The Consultant was very enthusiastic about the sct and I begin tests mid September. If all goes according to plan the harvest will be October and then the transplant 4/6 weeks later. I am beyond scared at the thought of it but feel I have got to give it a try. I was told the average remission if you can use that word is 2 years which is a bit disappointing but this can go to 4 years with a maintenance programme – can’t remember the name of the drug but he called it the grandson of Thalidomide – he did say this was not the norm in the UK. I am just trying to concentrate on one thing at a time so get the 6 rounds of chemo over 5th September and then take it from there. I veer from being very positive to the depths of despair and feel at times that my future will be grim with continuous drugs and the consequent side effects which people appear to dismiss as I don’t look like I have cancer – someone said the other day.
Anyway enough of my moaning how is your husband?
Anne
Hi Anne,
I’m glad you are settled in your mind as to the way forward for you. It is hard to know what’s best but we are guided by the consultants. It took my husband 11 cycles to get to SCT so we were so glad to be moving on to the next stage. We are now 6 months post SCT and my husband feels that it was worth doing despite now being on maintenance which means our lives are still ruled by the 4 week cycle. His bloods and bodily functions are all within the normal range but he gets tired very easily and his legs still lack strength. We weren’t given timescales for remission and we don’t ask. All I know is that some people get 6 months and others go on for 10 years plus so it’s very unpredictable.
He has made returning to work his priority and all his energy goes into that which leaves nothing for leisure but perhaps it won’t always be this way.
The fact that his brother died within two years of being diagnosed with Myeloma has spurred him on to accept the treatment and live life as best he can.
Time goes so quickly and before you know, you will be out the other side, SCT done and on the road to recovery. Keep posting, it helps to write it down
Best wishes
Teresa
Hi after reading about thinking of stopping treatment. I would like to tell you about my journey with myeloma. I was diagnosed in 2011 did the X1 trial, I had a rough time with the thalidomide and lost alot of weight and muscle in my legs. Was unable to walk for a good 6 months bed bound and feeling rotten. Then I had my cells harvested in July 2012 put back in August came home in the September and got stronger every day. I had a good 5 and half years without any maintenance then my levels started to creep up.
I started on Ixazomib in February got a bad rash on the third week so had a couple of weeks off. Started again in March same rash all over again on the third week was taken off and had a discussion about daratumumab. I started this in Blackpool Victoria Hospital in June and I have had 3 infusions already, apart from the pins and needles in my feet and a bit tired doing okay. Later in the year hoping for another stem cell treatment. I’m 61 now, not as active as I once was but try to keep going. This is a rough and sometimes rotten illness but if you can put the fight in I say give it a Go.
Thanks for reading etta x
Hi Teresa and Etta
It’s good to hear other people’s stories gives me hope for the future. I am halfway through cycle 5 and one more to go – should be completed by 5th September and then stem cell – decision time. I suppose my biggest fear is that I will never get my life back to what it was before. I was very active before my diagnosis- in fact I was Nordic walking the night before so no real symptoms which is why it came as such a shock. The stem cell co-ordinator assures me that I will but the thought of the life I am leading now becoming my future fills me with despair. I am not housebound but very weak and not able to do much at all. I get very down stuck in the house – I try to get out but have to drive every where cannot even walk to the shops which are just up the road. Just concentrating on getting chemo over and then take it from there – roll on 5th September
Anne
Hi Anne,
My husband still has to drive everywhere, even when he takes the dog down to the lake for her afternoon walk he pops her in the car, parks up and walks to a bench. His legs are still weak – our son calls them “chicken legs” – and we’re encouraging him to try exercising them. However, as he is putting all his energy into work he is too tired for any exercise. He’s never been a particularly energetic kind of person so its going to be hard to motivate him.
He was encouraged by his employers to apply for Ill Health Retirement and as he is now 59 he took their advice and has been approved. So although he didn’t really want to stop working for a few more years we decided that it was time to live life as fully as we can. He’ll finish work on 31st October so probably too late for us to get back into the camping we so enjoyed but I’ve challenged him to start building up his leg strength so that we can get back into it next year.
I think as you have always been active you will find it easier to get back to fitness although you might get tired more often than previously. You will probably benefit from physiotherapy (which my husband wasn’t interested in). Where there’s a will, there’s a way!
All the best for 5th September – my Birthday!
Teresa
Hi Teresa
Let’s hope 5th September is a good day for both of us. Had my 3rd velcade injection yesterday so just waiting for side effects to kick in.
Physio is a good idea, never thought about that, will definitely bear that in mind. It’s a pity about camping this year especially with the beautiful weather. If your husband retires in October that gives him the Winter to get fit. I call my legs “jelly legs” as they wobble a lot.
When I went to see the Consultant about the SCT he said I was underweight which I am not but said you can lose up to 10% of your body weight so start going to MacDonalds. My nephew gets married in 2 weeks and I have a very posh expensive dress to get into so no chance of that. God help me in my high heels with my “jelly legs”
Anne
Hi Anne, I would just like to reassure you that after SCT you can resume a near normal life. I was active pre diagnosis and am more active now as I have chosen to reduce work hours to enjoy life. I was diagnosed at 50 and it took me a year to get to SCT – I am now 4 and 1/2 years post SCT without any maintenance – drugfree – and life is good. It took me probably 6 months to get back to full fitness and playing in tennis matches again. I tried to stay active, playing tennis and going to the gym, throughout chemo until I had the Hickman line in for SCT. I had a gap of 4 months from last treatment (velcade n dex) to SCT. As the drug effects wore off I felt I had been playing tennis in lead shoes with everything slower and harder but once treatment stopped the fog gradually lifted and made me hopeful for life after SCT. I have never regretted it and whilst unpleasant it is doable in the grand scheme of things. Good luck and make lots of plans for next year when you will feel like you have got your life back on track.
Rebecca
Hi Rebecca,
Thank you for your comments. It’s great to hear a success story. As stated before I have found the inability to do much has been one of the most distressing side effects of the VTD. I am so looking forward to getting my life back. I have booked two holidays one in July next year (as can’t go abroad for 6 months) a year away!!! and another one not long after. As I an retired I spent a lot of time travelling and this has had to go on hold as well so frustrating but hey ho. I have also started a list of places in the UK I want to visit, although Scotland in February does not have the same ring as the Caribbean. Onwards and upwards and thanks again
Anne
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