Just been diagnosed!!

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

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  • #131498

    richard48
    Participant

    Another week done and another set of meds – all looking good so far and not too many side effects! I quizzed Dr Allamedine about all the numbers and they just about made sense-trying not to get too obsessed though. Just full of a cold even without going in to work or being in contact with others. I can live with that for now, and following this and your advice I will continue to stay at home for now when it comes to work. I can still do some.

    Thanks for your emails again by the way. I am a bit more relaxed and focused about things now, and eased off the worry of the effects of having a pint or two which I did last weekend, and it felt good. I’ve also been to the Bury Cancer Support Group this week and despite them having to move venue because of their flood they are doing everything they can to support their users and offer complimentary therapies in a new place across the road, which is great and very relaxed.  I left out the Bury Myeloma Support Group meeting-we went but I couldn’t go in – too apprehensive and not sure what to do. I can see where your husband was coming from Angela, but like you say there is loads of info on the website – I’ve downloaded pages and pages. We will go to one of the Myeloma UK national meetings hopefully though.

    I’ve also managed to get to a yoga session (absolute beginners) which was a struggle and not usually my thing but again it helped and took me away from my current thoughts. Gym wise I’m  still holding fire until I get rid of my cold or other things fixed.

    All in all – a good week of trying to live life differently but normally at the same time.

    Thanks again,

    Richard

    #131529

    rebeccaR
    Participant

    HI Richard, this all sounds very encouraging and positive so well done to you. It does get easier as time goes on although when diagnosed it seems impossible to imagine. I am glad you are trying new things, the more the merrier, and trust me you will takes bits from each and they will help you through the inevitable down times. As an example of new experiences and constantly moving on I have just tried paragliding today as I believe I am no longer/ will not be ever be/constrained by fear now! The more I do the more positive I become – it is infectious (in case you are wondering I have not passed it by my consultant but am sure he would say if you feel you can do it carry on👍🏻) Life is 10% what happens to you and 90% how you react to it. I think you will do well Richard as you have quickly grasped the way forward. I hope your wife joined you at yoga and is contemplating her own coping mechanisms/escapism.
    Best wishes
    Rebecca

    #131572

    adriwest1
    Participant

    <p style=”text-align: right;”>Hi Richard, glad your doing well. I am slightly ahead of you on treatment, cycle 5 just started on VTD.</p>
    At 47 years old it was/is a complete shock to the system and can be very confusing to fully understand, I reached the conclusion that you have no real choice but to get on with it- I am off to a support group in Oxford soon, I will let you know how it goes. Speak soon. Adrian

    #131578

    richard48
    Participant

    Thanks Rebecca. Still going well although back playing up a bit now. Hey ho. Not stopping me doing anything though, but I’ll have to pass on the thought of paragliding. I bet that was great. Maybe one day for me.

    Adrian-how has your treatment gone? I hope it’s doing the job. Has your consultant said how many cycles you may/may not have.  Mine has said at least 6 but could be more before the op.  I agree with what you say –  you just have to get on with it. I think dwelling on things negatively will make it more and more difficult, and I’ve read a few posts like this sadly. Positivity is essential, no matter how hard it is at times. Hope your Support Group went well.

    Richard

    #131588

    adriwest1
    Participant

    <p style=”text-align: center;”>AHi Richard, I live on the Isle of Wight so I have weekly visits over here and then go to Southampton to see the specalist, so far I have seen him twice and due to go again next Tueaday. The island consultant said it could be 5-6 cycles but the chap in Southampton has indicated that it will be more, at least 7. I think that the lower the paraproteins are the better- currently at 14 started at 60. What is interesting is the difference from one hospital to another. I have a lot more confidence in the Southampton hospital and what I am being told. The three things I have really looked at are:</p>
    1, make sure you get a good consultant, when I was told back in June the consultant on the Island was telling me that everything was alright and I would collect my pension and probably die from something else so to be honest I took it at face value and for three months gave it no consideration. Then when I saw the Southampton consultant and it was a reality check for us.

    2, infections, from what I understand this is the biggest issue with what we have. I need to look into this more.

    3, understanding of Myeloma, hence I will start attending group meetings, and doing more research but only from certain websites, I tried Myeloma Facebook but had to come off, for me it did not help.

    Rebeeca is great on this site and I only signed up a week ago but always looked. My wife loves her attitude and advise.

    By the way, my wife is also a full time teacher in the science dept teaching GCSE and A level so I have an understanding of how differcult it must be.

    Hope this helps

    Adrian

    #131650

    Ang287
    Participant

    Hi Richard

    We saw Dr Allameddine yesterday for Graham’s 3 monthly appointment. His bloods are still good so he carries on normally with his Myeloma XI maintenance (now 3 years in stringent remission). It’s now 4 years since diagnosis and Graham said to Dr Allemeddine that he was only originally expecting to survive 5 years and then Dr A said well you better enjoy the next year then with a smile on his face. Graham’s appointments are always fun in a way if that’s possible. Dr A said to me that whenever I have had enough of him I can e-mail him and he will give him the placebo instead of his maintenance drugs :). Dr A said yesterday that When Graham does eventually relapse he will be having exactly the same treatment again as it has worked so well this time round but I am hoping he has another few years yet before he has to consider this.

    Graham had 6 cycles of treatment before he was ready to have his SCT and then he had to transfer to Manchester Royal Infirmary to have the transplant whose care he stayed under until 100 days after SCT. He then transferred back here to Oldham with Dr A. Graham found it very hard saying goodbye to all the staff at MRI as they were all so amazing but it was lovely shutting the door to the isolation room at discharge.

    Graham has had a bad chest infection and cough for about 4 weeks from late December until now and he seems to be like this every year. He has only gone back to his art class this afternoon as not been well enough since before Christmas so I am glad he is getting back to normal again and we are now planning my 60th birthday party in 3 weeks so lots to look forward to and it should be a really fun night. Graham will be 60 in November.

    Hope you are doing ok Richard, Angela.

    #131660

    peterl
    Participant

    Hello Angela,

    I can well imagine that after 100 days (surely not all in the isolation room) that Graham was a bit ‘sad’ to leave the medical teams there.  There’s often a strong, caring and professional bond between long term patients and their medical teams, even to the extent to the  person that brings you round for your first cup of coffee/tea at breakfast time and asks you, “would you like sugar on your cornflakes?”  The max time I was in hospital (food poisoning) was 11 days, and although I was very keen to get home, I gotta say that I did miss the staff (and other patients there).

    Can I ask what elements (drugs) are in Graham’s XI maintenance cocktail, and additionally, it seems that half the people in the country are suffering from chest infections at the moment , so once under control, I wouldn’t have thought it was a very great problem.  Can Graham have a glass of wine or beer with his medication?  Hope so;  So have a GREAT time at both your 60 party celebrations!!  And best wishes,

    Peter

    #131675

    Ang287
    Participant

    Hi Peter. Graham was only admitted to MRI for about 2 weeks. After stem cell transplant was carried out he was allowed home for a couple of days until he started feeling poorly so that was good. He then had to go straight to isolation when admitted as he had a bit of flu. He also had a morning in intensive care and while there rang me for a bacon butty. However, after discharge you are still under the same unit for 100 days and so you have a couple of follow-up appointments at the transplant hospital before being transferred back to your original hospital at 100 days.
    On the maintenance now Graham is on Revlimid and Vorinostat. On weeks 1 and 3 he is a bit irritable but he is unaware of this. I would have preferred him being on no maintenance but he decided to carry on with the trial and we will find out in the future whether or not this was the better.
    Yes you are right about the chest infections this year and I was ill too but for the last 3 years Graham has always been bad at around late December/January and it takes him a while to shake it off. Graham most certainly does enjoy wine and beer with his medications and has only avoided alcohol during the stem cell transplant period when he didn’t really feel like it. He suffered from a bit of nausea for a couple of weeks after transplant but when he had his first beer I was really happy because I knew he was getting back to normal.
    Wishing you all the best with your treatment.
    Angela

    #131684

    richard48
    Participant

    Thanks for the reply Adrian. I certainly have a good consultant-the same as Angela’s husband! He’s thinking of at least 6 cycles and my proteins came down to 7 a few weeks ago. Waiting for another result next week. Hopefully even lower after 3 cycles. You’re right about infections. Managed to avoid them even with going in to school a few times. Although I was pulled in by the registrar on Monday as the infection levels had gone up in my bloods. I have had a cold but nothing else and she checked my chest and asked the usual questions. Luckily they gave me the jab of Velcade-phew!! I’m still on the FB site and it does help me but I can see why sometimes it gets a bit much and that’s not just from the sad stories.

    Thanks again Adrian. I’ll keep you updated Good luck and best wishes,

    Richard

    #131685

    richard48
    Participant

    Hi Angela,

    Glad all good with Graham. It’s great that his treatment worked well first time and I’m positive it’s doing the same for me. We too were in Oldham on a Monday- start of cycle 3. Seeing the main man next week with some good results I hope!!

    I’ve been told I’ll be going to MRI for my SCT. The isolation room sounds interesting- I suppose to keep infections away. Lynn has been looking that up in preparation for my time even though it’s a while off. By the way thank you for being in touch with Lynn on email etc. It’s really good for her and she won’t mind me saying that when she reads this.

    It’s also pleasing to hear Graham has gone back to his class. Hopefully he’ll be doing more soon as well as preparing for your 60th.

    Hope you have a good day/night!

    Thanks again Angela. Will keep you updated – one of us will.

    Best wishes to both of you.

    Richard

     

     

    #131688

    Ang287
    Participant

    Hi Richard
    I too hope you get some good results on Monday. Dr A won’t tell you too much about the next stage as he takes things very slowly which is good because it would be too much to take in all at once and you need to concentrate on what’s happening at the moment and see how you do. The main thing is to get rid of your pain and get your bloods to a stage where you can have a SCT – and not everyone goes down this path. Some people just carry on with medication and that’s your choice.
    Good luck for your appointment next week – Graham is there on Wednesday for his monthly Zometa infusion to strengthen his bones and it’s the 4th week of his monthly cycle so he doesn’t take any medication next week.
    Angela

    #131690

    richard48
    Participant

    You’re right about Dr A Angela. He does like to take things slowly. Hopefully my bloods will be sorted soon. Pain in back has been better these last couple of days-probably the steroids and velcade I hope!

    Hope Graham’s appointment is good next week too.

    Richard

     

     

    #131754

    rob47
    Participant

    Richard et al,

    I am 47 and was diagnosed with MM just before Xmas. I am currently on my second cycle of VTD. So far side effects OK a bit of numbness in fingers and thigh which doctor is aware of.  It was a shock a lot happened quickly resulting in fractured lumbar and a visit to A&E, I had been suffering from unexplained lower back pains. I am wearing a spinal brace for next two months. A lot of time to reflect going from a busy lifestyle to living in a bubble away from work and outdoor activities.

    Appreciate being able to read your posts and helps me make sense of my situation and feel not so alone.

    All the best

    Rob

    #131755

    greg777
    Participant

    Hi Rob,

    Welcome to the forum although sorry you had to find it. MM can be a tricky little fellow but hopefully you find support on here as and when you need it. There are loads of good news stories out there and treatments developing all the time so whilst it is a massive shock to get the diagnosis, it is a very treatable disease and I hope you find that with the VTD.

    All the very best,

    Greg

    #131756

    peterl
    Participant

    Hello Rob,

    Yes, it comes as a complete shock to have an MM diagnosis!  I never had a clue about MM, in fact I’d never heard of it, but we learn fast, and this website is invaluable in that sense. I had 8 cycles of VTD and it brought my light chain numbers down from a staggering 11,500, to single figures, which then remained constant. I had only one significant side effect, and that was frequent loo visits, and it was significant because it lasted for months after the finish of cycle 8. But with MM, nearly every patient’s experience is different either in small or large ways, so it’s hard to predict specifics.

    I hope all goes well with your treatment plan, and keep us all informed regarding your progress.

    Peter

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