Hi Ian, Thank you for your post, and the kind thoughtful ways of trying to make our minds up on which path to take. I really understand where your coming from, it’s like when I go to day care at my local hospice I find solace with another chap who is in the same situation and we both enjoy each other’s company. He understands what I am going through and I understand what he is going through so we get real benefit from each other.
The first cycle of VCD is complete and I managed it fairly well but they have reduced the dose a little because of my a Tinnitus went through the roof and was driving me crazy. The next stage will be what the blood test results show ?, I feel it’s working because my fatigue has improved along with the amount of bone pain I was getting just prior to the new treatment. In regards to the 2nd SCT I am due to go to Kings College hospital next month it was they who did it. And they are not aware yet of the relapse so it’s going to be interesting what they have to say and maybe recommend. Again thank you for the reply.
take care CT.
Hi Jan, Thank you for your post, and especially the point about continuing the Zometa at a time when further bone damage has been shown by the latest scans. I will mention it to the Consultant in April so that I can get the best outcome when considering all the factors. The second SCT option I just cannot see the overall benefit of going through with all discomfort ( very understated ) for the amount of time in remission in my case. I did have a number of issues prior , during & after the SCT , I had a blood clot in the left leg, then after my spine repair Operation we were taking a gentle walk when I got a suspected Blood clot in the chest which I was rushed to hospital. Then due to low immunities twice I’ve been admitted with Phuenomia the last time was Boxing Day. Maybe I have just been unlucky this time or certainly lucky I’ve survived haha. Again Thank you for your advice.
Take care, CT.
Hello Sand, I found your post so interesting and positive about your SCT, yes like you my first dozen or or so Zometa infusions gave me plenty of bone pain but I had really bad bone damage to start with. And after my SCT in March 2015 I was in partial remission until January this year, although the MM was rising all the time and by December last year the scans showed further bone damage was starting so I have gone onto VCD my first 3 weeks. I have just started Zometa again having already had my 24 monthly doses, but because my kidney function is ok the Consultant said it was ok, however after reading Jans good comments I will ask my Consultant in April to consider just having it quarterly. That way I feel I would get the benefit without causing other issues. Good luck with your progress, it appears you have done really well. My SCT wasn’t nice and I don’t really want a second one but the Consultant is pushing me for it , at this time having only about 18months remission just wasn’t long enough or did I expect to much ?. All the Best . CT.
Hello, I didn’t reply at first because being a little under the weather due to Chemo, but I would just like to say a little late, yes it must very daunting when someone you love is given this type of news so I do really feel for you and your family. Just a little about me first, I was diagnosed with MM in 2014 having severe bone damage, so much so was reduce to a wheelchair and in a complete mess. I had my spine fixed pretty well with keyhole surgery, and my right femur have had a metal rod inserted. I had a stem cell transplant and was remission for about 18 months. It’s now active again hence why I am back on chemo.
For you and you Dad, MM is treatable there are quite a few different types of drugs that do well in knocking it back. Yes to be frank some of which give not so nice side effects, but they do reduce the bone damage pain. It is a very difficult subject especially with all the complicated names, but try to do your research on this web site or Myeloma Beacon in the USA. They both give excellent info, I would expect your Dads consultant with decide the best way forward, and once it’s knocked back maybe he can have like me the keyhole surgery on his spine. I wish you and your Dad all the best. CT.
Hi all, thank you so much for all the replies in regards to the Velcade, I think now I ve read the Velcade info guide I will see if my Consultant is to recommend VCD , if not I will ask. Seems the better combination .
At the moment I feel I need to get onto some sort of treatment straight away because my bone pain has taken off, both my shoulders now are so painful. My ribs which are always troublesome are hurting more than usual, I did increase my OxyContin dosage from 40 to 50 but was very nauseas so went back to 40mg. I think I have no choice but to increase to 50mg and give it more time. I expect it will be mid January because of the holiday period before I get the results which is very worrying , I hope I don’t get anymore fractures. Again thank you and Merry Christmas.
Regards CT.
Hi David, thank you for the quick reply and info, I will certainly check it out. All the very best. CT.
Hi Molly, I hope your Mum operation really goes well and is fully successful, I had 3 fractured vertibaes repaired and another damaged 1 repaired last October. It was carried out in Medway hospital, they called it Kyphoplasty so a little bit unsure if it’s the same thing, it basically was key hole surgery and the Surgeon filled the fractured vertibrea with cement. All I can say is for me it was brilliant, I had been in agony and wheelchair bound for a year since diagnosed with MM. When I went to have a wee it was like someone sticking needles in my lower legs and feet. Since the the operation I am out of the wheelchair and my back pain drastically reduced. However due to the all my bones badly damaged I still have to take the same amount of pain relief . I hope this helps to give you some confidence in regards to your Mum and wish you all the positive outcome you hope for although not sure if it is the same operation.
Take Care CT.
Hello Cheryl, seems like you were diagnosed the same year as me and went the CDT which again is the same. I was offered to do trials but back then in my shocked confused mind I decided just to take the standard treatment, however it worked in that it managed to knock it back in order to have a SCT.
Your right in thinking about further scans to establish what or where the MM is in respect of bone damage it is something I intend to ask in November when I see my Consultant. You said your oncologist ? have you asked your Haemotologist Consultant . The Zometer infusions I have just had #21 out of 24 but the Consultant has said if my kidneys are ok then I will likely have more. I feel they have worked in helping the bone damage but only by the amount of pain that’s reduced. For example after every Zometer infusion I would have massive amount of bone pain but now I don’t . So was you also told you would have these for 2 years monthly or 24 in total ?. And with scans I only had the initial full set but was told the amount of damage done which I have mentioned before except I was told even my skull had lytic lesions so yes I would very much like a full set of scans to compare regardless of costs. Hope this helps a little but as you would have read it’s a very individual thing but sometimes our paths cross haha. Good luck and Take Care CT.
Hi Peter, sorry for not replying to you for the message you have written before now, but I have been in hospital with a severe upper respiratory infection. I felt so ill and I suppose I was lucky in that I had an appointment with my Consultant and my wife and I only sat down, and when I said I felt so unwell they examined me and said I was going to be admitted straight away. So I spent a few days having intravenous antibiotics and fluids before being discharged with oral antibiotics. At present although feeling better than I was I am still not right and extremely worried that the antibiotics don’t knock it back completely due to my immunities being low. If you feel up to it please let us know how you got on, I hope all is well and take care. Many Thanks CT.
Peter, thanks for letting us share your funny situation in the MRI scanner I can imagine the state you must have been in. It would have been an awful type of torture when all you want is to get it all over and done with. It reminded me of a incident of mine in the MRI scanner, I too was waiting to go into the tunnel and the technician asked if I had any metal work on me, so I replied just my wedding ring . He says ok hang on to it but give to me before we start. So you can guess what happened I am the tunnel the machine starts up & the music playing I have my hands held together when I realise I’ve still got the wedding ring on. In my blind panic I decided to take it off and throw it out !. It just went so when the scan was completed and the technician nurses said are you ok ?, I said I’ve lost my wedding ring. As you know these scanners are in use all the time with patient queuing up for their use, and we have this one being stripped down looking for a ring. Feeling really bad about the time taking I thought I better take the hit and tell the Wife I’ve lost it, but the Technicians said no we must find it, eventually they did find it under the tray that you lay on. I can only imagine these Scan operators must see all sorts of peculiar incidents in these scanners. Many thanks for the story it is very much up lifting.
CT.
Hi Peter, yes sorry I cannot help with how they anylis the various types of MM but also would be interested to know. All I know was what was written up on my hospital discharge letter, having spent 3 weeks with so many test every day they would say still looking. I had so so many bloods, Bence jones urine, MRI, CT scans, bone marrow and even bone chips taken from my pelvis which wasn’t very nice. Then finaly told I had MM of NS type and that my serum free light chain was 1280 the PP wasn’t registered but now my PP has been either 1 or 2, and my SFLC is 48. Like you say research into what’s what or anyone who understands these things would help.
all the best, CT.
Hi Karen, good to hear some of the issues your Dad was having have improved a little, the fatigue is a big issue with me even now after being drug free for some time. It’s the drugs the pain relief and MM itself, the other thing you may want to tell your Dad is that when taking Thelidomide it can give you tingling dumbness in the toes and fingers as a side effect. I was 100mg a night and would get nasty little cramps in my fingers and toes and now it’s left me with numbness in my toes that I think will be permanent . However if he can manage with the side effects it gives which are not very nice you will find it really does work in knocking MM back. Also I use to take my Thelidomide late at night say 10pm at the same time with a couple of biscuits and Horlicks. Reason being the toxic nature of it and the nurse said about nightmares which I did have from time to time. Wish you both well, take care.
CT
Hi Tom, firstly thanks for the very quick reply I thought that maybe you were off line at the present so was happily surprised.
Again that’s really interesting about the scans because the only MRI , CT scans I have had was during the 3 weeks I was in hospital getting the MM diagnosed back in 2014 . So I have really no idea the latest situation with the bone damage, but that’s probably because I underwent vertibrea repairs, and then had a steel rod inserted in the right femur ( they want to do the left femur but I am not to keen ) .
I am due to see my Consultant next week after 6 month so I will add the MRI/ CT scans to the list of questions I will ask. The reason I worry about about the rise in light chains and because no specialist have been able to tell me is, at what point in the light chain scale does the Bone damage start, because the amout of bone damage I have I can I’ll afford to have further damage. In short start treatment before reaching that point where ever it may be.
Good luck with trial and all other treatment, again thanks for the prompt reply.
CT.
Hi Tom, I know it’s been a number of months since you posted your situation, I haven’t been on the web site for a while so been playing catch up. But if you read this I would be very much interested how you progressed . I also have non secretary MM with no PP indications which meant not getting diagnosed through the normal blood test, until I had so much bone damage I could no longer walk, lytic lesions in all bony structures, fractured ribs, collapsed spine and both femurs at breaking point. Anyway after CDT had my SCT and my light chains went from 1280 to 25 post SCT. However over the last 15 months the light chains have been rising by a few points each month and each time by an increased factor. They are now at 48 the specialist nurse says it’s nothing to worry about because it’s not a massive spike !, my simple brain says but it’s slowly going up ?. I was offered radio therapy for pain relief but it never went ahead, so I was really interested in what you have said about radio reducing yours.
I hope your still doing well and keeping it at bay, all the very best.
CT.
Hi Emsie, Firstly sorry to hear about your husband and I can truly understand the anxiety your feeling, the replies that have been posted are so positive and that is what you need for both you and your husband along side the treatment. I was diagnosed with MM but mine is the kappa light chain one but still amounts to the same treatment. I had my SCT nearly 18 months ago but before that went ahead had plenty of issues which of course frightened me, it’s only natural. I had a serious blood clot in my left leg so had blood thinning injections in addition to those I had had already, plus infections etc etc. the SCT was successful in that I have been drug free since then ( apart from the pain medication ).
With your concerns about relapse, I can only say that the SCT is massive ( not very technical ) but what I mean compared to the other drugs it really knocks it back. And with your husband being so young his recovery should be that much quicker, then after approx 100 days carry out a bone marrow biopsy .the results of which will determine if he can be drug free or a maintenance drug treatment. Then like what has been mentioned there are new drugs coming along that sound very promising. I am seeing my Consultant on the 9th Aug so keeping my fingers crossed on how mine is behaving . I wish you and your husband good luck with everything .
CT.
