Just been diagnosed!!

This topic contains 88 replies, has 18 voices, and was last updated by  richard48 4 years, 2 months ago.

Viewing 15 posts - 31 through 45 (of 89 total)
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  • #131767

    richard48
    Participant

    Hi Rob,
    Another person close to me – diagnosis month, age (47 when diagnosed 48 a week later -Happy Birthday! ), treatment and cycle! I’ve just finished my 3rd cycle  of  VTD and all going well as I am sure your’s will. My light chain figures have come down by 75% and that was after 2 cycles. Still waiting for results after the third cycle.  My side effects are much the same although I do get very fatigued at times. I took Rebecca’s advice from this forum and find that doing things when I start to feel like this helps-like taking the dog for a walk. I had hoped to get back to the gym at times like these but I’m still fearful of infections and also my back is playing up too. (Sorry to hear about yours). I’ve always had back pain from old war wounds/playing rugby etc and was told the other day that it may actually be sciatica as opposed to the Myeloma as when they did the original scans/x rays no lesions were seen in this area, even though the pain had been bothering me for some time before diagnosis. I am hopefully getting referred to a physio by the Mac Nurse and I’ve been given some painkillers. What’s another pill to the already big mix we have to take. I’ve also gone to my local Cancer Support centre and have managed to get some complimentary therapies and advice including reflexology and relaxation classes. It all helps and keeps me positive. Thats the important part!  Stay positive Rob. It’s the best place to be. I certainly know how hard it has been and will be at times but don’t give up.

    Richard

    • This reply was modified 4 years, 7 months ago by  richard48.
    #131776

    moonstone
    Participant

    Hi Richard, sounds like you’re doing pretty good! Im 49 and was diagnosed in July and had a pretty tough go of it. It started out like a nightmare but now things are looking up. I’m not one to get into the numbers, proteins and such, not even wanted to know how many rounds of chemo I was to have. I just wanted to go in for my weekly treatments and go home. First month was hell for me but I stuck it out. As for my diagnosis, it came kinda late. You are lucky to have found it early. MM isnt a walk in the park that’s for sure! Im here in the U.S. and I had to go to UCLA to have rods put in my leg and arm due to this disease and my Orthopedic Oncologist there told me, “If you’re gonna have cancer this is the one to have!” She told me that leaps and bounds are being made in treatments and research. My Oncologist also told me that a break through could be right around the corner. I sure hope they are right. I go next week for my bone marrow biopsy to see if I’m in remission, so fingers crossed! I’m here if you have any questions at all.

    #131783

    rob47
    Participant

    Hi Richard,

    Thanks for the encouraging words. Yes MM was a Xmas present I won’t forget (I started chemo on the 23rd Dec).

    I am doing fine and feeling positive today like I want to get out and do more. I am finding the final week of the cycle OK, although I am only coming to the end of cycle 2 it is the start of the third week and coming off the steroids that tends to be the worst for me.

    Side effects not too bad, the fatigue comes and goes. I have some  neuropathy in the end of my fingers and right thigh (the fractured lumbar and pain are all on my right side). I have had my dosage of thalidomide reduced to hopefully help reduce this. I have been assured this will not alter the effectiveness of the treatment.

    This week seeing my haematology consultant so fingers crossed for some better results. On Wednesday I am off to London to see a consultant at UCLH to discuss a future SCT treatment.

    Would be interested to know  what sort of physio you get outside the hospital? I have not any outside the hospital. They were very good in ensuring I got the right back brace early to hopefully help back heal correctly.  I have found the Myeloma website useful in terms of exercises. I guess it’s getting the right balance building my strength back up without overdoing it.

    I am taking  Rebecca’s and your advice and going off for a short walk before the skies open. Hope your treatment goes well.

    All the best  Rob

     

     

     

     

    #131948

    richard48
    Participant

    How is everyone? Hopefully well with treatments going the right way or just feeling good with or without them. Just a quick update from me. Started my forth cycle this week. All going well and got some results-light chains down 90% from the start of diagnosis which is great news even though they are still in the 1000s. I got my scores wrong in an earlier email.  Kidney scores are also the highest they’ve  been- up to 45 eGFR. I was initially told that they were down to 30 but the nurse must have been reading someone else’s score?  No more side effects-bit of fatigue but not stopping me doing anything. Back/pelvis still sore but it could be sciatica. I made it worse by doing some painting the other day – one of my monthly goals – but worth it and gave me a purpose. I’m still keeping clear of the gym but have bought a cross trainer which is getting used very steadily. Can’t believe how unfit I have become since this all started but I’ll get there. Dr A has given me some calcium tablets and will try me on Zometa once per month – anyone experienced that before? Hopefully it will help and can only be better than tramadol. I took them for a day 2 weeks ago. Tried watching the first 6 Nations game but it was all a haze and I felt away with the fairies – not good. I’d normally be in the pub with a pint in my hand!

    Take care everyone and hope things are going well for you all.

    Richard

    #131951

    rob47
    Participant

    Hi Richard,

    Good to hear your good news on the light chains, and that you sound like you are moving forward day by day.

    Doing OK my pp measure has been coming down so haematology doctor seems pleased. In terms of side effects the peripheral neuropathy has improved. Still have  some back ache, I think some of it is also psychology in that I worry  about getting another fracture.

    I am going into the treatment centre on Tuesday to have a Pamidronate infusion (I think it has a similar objective to Zometa in terms of trying to strengthen the bones) which I am to be having once a month. I am into cycle 3, I had one at the start of the chemo when I was in hospital but can’t remember too much as that was a bit of a blur.

    Glad you are keeping active, I do sometimes find it difficult going from an active lifestyle (work, running around after the kids, taxi driving service and sport) to being restricted by the impact of MM  and wearing my spinal brace and being mainly at home alone. I am trying to do a bit more day by day without overdoing it. I like your idea of setting yourself goals.

    My trip into London to UCHL went OK. It was mostly about informing me about the process for the STC treatment though I am at least  a few months off this at least given I am starting cycle 3, but it is good that I am on their radar.

    Completely agree watching 6 Nations not quite the same without a pint in your hand.

    Wishing you all the best

    Rob

    #132092

    chevgr
    Participant

    Hello all

    I read this with interest. I’m newly diagnosed, 47, male. Inspired by the stories of good response to treatment.

    I have no idea what my treatment plan will be yet.

     

    #132102

    rob47
    Participant

    Hi Chevgr,

    I am just coming to the end of cycle 3 of my treatment (Velcade, Thalidomide and Dexemethasone). Whilst we are all fighting a common enemy, I understand all our situations and our reactions to treatment are individual. I understand VTD is one of the most common treatment plans, the side effects I have had are tiredness/interrupted sleep due to the steroids and a little bit of tingling in the fingers but this has been managed by adjusting dosage. Yes there are some days when I feel bad but there are also at least as many good days in the cycle when I feel like myself.

    My paraproteins are nearly down to single figures (I started at 48), so even though it is a long process it is working just need to be patient and keep positive.

    Wishing you all the best with your treatment.

    Rob

    #132104

    chevgr
    Participant

    <p style=”text-align: left;”>Hi Rob</p>
    <p style=”text-align: left;”>thanks for the reply. My paraproteins are 49 so I guess that means I’ll start treatment soon? Is that high or does it mean it’s advanced?</p>
    <p style=”text-align: left;”>How long does each cycle last and can you work in between or are you off work for a while?</p>
    <p style=”text-align: left;”>Good news yours have come down so much</p>
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    #132105

    chevgr
    Participant

    Oh that’s annoying the last message came out as HTML!

    I’ll repost:

    “thanks for the reply. My paraproteins are 49 so I guess that means I’ll start treatment soon? Is that high or does it mean it’s advanced?

    How long does each cycle last and can you work in between or are you off work for a while?

    Good news yours have come down so much

    #132108

    rob47
    Participant

    Hi,

    I don’t know if 49 (or 48) is high I have come across people who started with higher and lower, they say the range is upto 90. For me I was fortunate to start soon after diagnosis but I think that was partly due to the fact that I had quite a bit of bone damage in my lower back resulting in fractured lumbar which needed to be addressed. It also may depend on when and what day the hospital starts the cycle as the myeloma treatment seems to be on set days.

    My treatment is a 28 day cycle (though some people I have met have 21 day cycles). I have been told to expect 4-6 cycles of the initial VTD treatment then hopefully a stem cell operation.  Each cycle I have four visits to the hospital for the Velcade injections and once for a  pamidronate infusion (to strenghthen and protect the bones), the rest of the medicine I self administer at home.

    Whether to work is a very individual decision, I guess depending on injuries and reaction to the medicines. I have not worked since diagnosis as the doctor has signed me off each time. My situation is complicated by the fact that I am wearing a back brace so I am not currently driving, but would like to go back at some point during the treatment but full time may not be practical given the appointments and some days you don’t feel up to it and also need to consider risk of infection.  Your doctor should be able to advise on work.

    Hope your treatment starts soon and it goes well.

    All the best Rob

     

     

     

     

    #132142

    richard48
    Participant

    Hi Chevgr and everyone else.

    I’m on cycle 5 of VTD-just started today. Pretty much the same as Rob – 4 visits but over 21 days. Just got a text from Manchester Royal today for an appointment to talk about Stem Cell Transplant. This is good news and hopefully can come soon but I may need more cycles after the 6 planned.

    My side effects are pretty much the same as Robs but my back isn’t as bad. It does give me a lot of pain in my pelvis and the consultant has started me on Zometa once per month to strengthen my bones. Had my first lot at the end of cycle 4. The pain might actually be due to old war wounds but he said the meds won’t do me any harm. When I had my original scans and X-ray they only found some Myeloma effected/dark areas/lesions on my skull and nothing around my back/pelvis. Consultant said that it’s not a problem on my skull- just more susceptible to fractures if I bang it.

    My light chains/para proteins were 11000 milligrams but have gone down to 1000 after 3 cycles. Waiting for the next set of figures on a Thursday or next week. Long way to go but happy with that. Good news about your scores Rob!!

    As for work I still do a couple of days a week in between hospital visits and also work from home. It can be tiring at times but I find doing stuff gets over the feeling of being fatigued and it helps with normality.

    Hope all goes well for you.

    Best wishes,

    Richard

     

    #132253

    alex2412
    Participant

    Hi Guys

    I’ve never written or responded to posts in the past, but having read this thread this evening, I just wanted to offer all of you some hope.

    Three years ago I was diagnosed with MM, at the age of 38.  I would say it was at the forefront of my mind for the first two years. One of the hardest things was dealing with the logistics of having to attend so many appointments while trying to hold down my job and provide for my young family.

    My treatment plan was V.T.D and then tandem transplants.

    My paraproteins were first measured at 68 and they soon tumbled as I had the V.T.D most of you guys are having. After 6 months of V.T.D, I went in for my stem cell harvest and had the autograft about 9 months in.

    7 months after the autograft, I had the allograft. A donor from Germany came up trumps for me. God bless him. That was in May 2015 and I’m still having DLIs (donor top ups) in a bid to get a little bit of GVHD to eradicate the remaining cancerous cells.

    Plenty of ups & downs, a bit of pain here and there, but the one constant was that of determination and a sense of humour. I swear this helps.

    When I look back, I drove myself crazy in my quest for information, wanting to predict my outcome from others’ experiences. I had nothing but questions on my mind. Uncertainty. Fear.

    If I could go back 3 years and offer myself some advice, I’d say “Alex, take things one step at a time, as it’s a long old journey. Listen to your body, listen to your doctors and this isn’t the end – just another chapter in your life before you get back to your best again.”

    I learned from my own journey, as each of you will and I’m now back running, playing sport badly, going to the gym and really enjoying my life. I now feel wiser and stronger than ever before.

    I wish you all well and I’m here for any of you if you ever have any questions.

    Alex

     

    #132254

    chevgr
    Participant

    Great to hear.

    On the question of exercise. Do you do all the usual gym training now?

    Can one exercise during treatment as long as one feels well? The dr told me not to use weights. I guess because of potential bone issues? What about other forms of gym work anyone have experience?

    Thanks

    #132256

    greg777
    Participant

    Hi Alex,

    Thanks for your post – it was really inspirational. I was 36 when diagnosed and I have had a similar treatment plan to you (I am about 10 months behind you) so it is great to hear that you are doing so well. I got pretty bad GvHD after the allo, but I am recovering and it is great to hear everything you say about exercising and playing sport (even if it is badly!).

    My personal view is that you have to do some exercise, if only because it is good for the mind (which in turn will be good for the body). I guess we should all be careful about doing too much, but I reckon everyone knows where their personal limit is, so I would just go for it. I had a compressed vertebrae in my back on diagnosis and still have my PICC line in my left arm, so I am careful about those areas, but I don’t hold back anywhere else. In fact, my hospital has a bike and gym equipment in it, so it was definitely encouraged! Probably best to get an opinion from your medical team though based on your specific circumstances.

    All the best

    Greg

    #132262

    chevgr
    Participant

    Thanks

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