Thank's Tom,David,Dai,June,Sue,Andy,michele,Eve,Ann,don't think I've missed anyone? Go for a blood test tomorrow morning then that's it until Thursday when I start up the Bendamustine.
Merry Christmas everybody and hope you all have a good one.
Keith.
Thank's Eve, actually I did have a Blood and Platelet transfusion just before I was discharged from hospital last Tuesday. My Hb went up to 9.7 but then back down to 8.9. I never get into double figures and all since I was on Revlimid which hammered the PP's but at a cost. I should have restarted my treatment of Bendamustine last Monday but had to be rescheduled to start next Thursday if all is ok. Having to be on drugs indefinitely is having an adverse effect on my blood counts and it's a catch 22 situation, I need the drugs to knock the MM back but the treatment is knocking everything else back also. If only there was a treatment that battered the Cancer cells and left the good ones alone. Up to now Velcade has been the kindest treatment in that respect. I now hope Bendamustine can do a similar job and get me back into remission.
Best wishes for Christmas&New year with plenty of good health.
Keith.
David, if you think that you need to get the old coffin ready with figures like that try looking at mine.
Hb 8.9 WBC 2.9 Neuts 2.1 Plts18 with figures like those I should be hearing the soil hitting the lid already lol.
Ha-way man you are doing great and don't worry about the PP's as they fluctuate up and down anyway. And as for going from 3 month to 2 month visits I'm in there at least once if not more times EVERY week. I could only dream of counts like yours so like you advise me to do Just keep fighting,you're doing greeeeaaaaaaaat!!!
Keith.
This is a common side effect with Zometa but it usually only lasts for a few days then it will settle down.
I don't remember having this problem myself but maybe I was just lucky,one of the few times I have been with this disease.
Keith.
Hello Dai
Hope you get out of hospital before the weekend as I'm sure you will. I was admitted early hours Sat Morning with a temperature of 39.1 and a very high pulse rate. I got out today Tuesday and pleased to be home. I've posted the details on general and it was Sepsis that was causing the problem. This had been a long time in coming with Neuts under 1.0 since the end of my Revlimid treatment never really getting much above 1.5 for a long time before that. I was supposed to start the second cycle of Bendamustine but had to be postponed because of the condition of my bone marrow. Antibiotics,Blood,Platelet transfusions and filgastim injections were all used to get things under control. You also keep getting hit like me and it is annoying and this has to be about the worst experience I've had to date. I just go from one setback to another with very little respite. I'm trying to get a holiday far away for some sunshine but I can't get a window of decent health to do it,but maybe next year I will fingers crossed. My body has been battered with so many different drugs for so long and with little rest it's now telling me enough is enough and there's a marked difference between how I used to be after my first SCT and how I am now,a lot less resilient and finding it hard to fight infections maybe, but the one thing that has not diminished and that's my iron will and determination to beat this thing. As long as the mind stays strong then you're in with a chance. I hope you get sorted soon and the Bendamustine does the business for you. Keep fighting it Dai as I know you and I both will.
Take care Dai/Janet you both deserve a break from this horrible disease and let's hope we all get one very soon.
Keith.
Hi Terry
You do seem to be suffering somewhat with this awful disease. I was diagnosed Dec 2007 and have had 2 SCT's and now on Bendamustine after 3 relapses. I start my second cycle on Monday with a 1 hour infusion followed by the same on Tuesday along with the obligatory Steroids. Side effects? not all that many in my case apart from the usual fatigue and a lack of appetite for the first week but no other major problems. It is known to take sometime to start working so I don't yet know how things are progressing with me. Blood tests are been taken at least once a week so as to monitor the situation. That's about all I can tell you as yet although you do have to be careful with your kidney function as Bendamustine can have an adverse effect in this area. No doubt the hospital will warn you of this and give you the appropriate medication to combat any problems that may arise.
Best of luck with it all.
Keith.
Hi Tom
I would take notice of what Helen says with regards to private treatment,it's mega expensive and getting back onto NHS treatment can be difficult. As for Zometa I was originally on Bonefos after being diagnosed in Dec 2007 and then went onto Zometa March 2009 and have been on it ever since. It depends on your Consultant and mine said he prefers his patients to continue indefinitely as long as there are no problems with side effects. It is also believed that Zometa has anti cancer properties that help keep the disease at bay. As for future treatments I only hope they don't take too long to be licensed for use on the NHS. We were promised by the last Government as well as the present one that patients would be allowed treatments before they had been licensed by NICE if there was no other alternative but this is not happening so we just have to keep fighting.
Stay well.
Keith.
I've had 2 SCT's and 3 relapses inside 5 yrs and presently onto my 4th treatment. After my 1st transplant I asked about the possibility of maintenance therapy and was told that it depended on the remission that was achieved. If it was a complete response i.e. zero PP's in the blood as I was then MT was deemed to be superfluous. I was drug free for 2yrs 4 mths before I relapsed,although I did continue to take Bonefos and later Zometa which I still take now. I would agree with Tom that if your remission is complete then why take drugs but your Consultant will guide you on that. The SCT is great if it works and even then you just don't know how long you will get from it. My 2nd only lasted 7 months and this is an average for a 2nd SCT which hardly ever lasts as long as the first one and my 3rd treatment lasted even less only 5 months. I am looking out to go on a clinical trial but it's not easy getting on one.
When your options are limited then you'll try anything.
Best of luck Tom.
Keith.
Already tried that one and yes it does work very well. There is a better one which has Manuka honey mixed in with the Aloe Vera and a shower gel which supplements it. It does ease the condition but the problem is it keeps returning.
Keith.
Hello Dai, so you too are going on the Bendamustine route very soon,well I wish you luck on your new journey.
I started my treatment with a 1 hour infusion on both 16th&17th Nov. I felt tired and my appetite dropped off somewhat but after the first few days returned to normal. On the whole I'm tolerating it well but my blood counts are still quite low. I phoned the Myeloma nurse at MUK and she told me that because of all the different drugs I have had my Bone Marrow was badly suppressed and therefore was slow to recover which made perfect sense to me. At the moment I am enquiring about the Vemurafenib trial which will be performed at the royal Marsden,details on the MUK website. It's very doubtful if I will qualify and anyway if I did wonder how it would impinge on my current treatment but that's something I will need to discuss with my Consultant. I've had another blood test today but I have not been contacted with the results but I am back there next Thursday before going back on the Monday afterwards to start the second cycle of Bendamustine. What you need to be careful of with this drug is it's effect on the kidneys (I take Allopurinol) so the old adage of taking on water is more important than ever,but the hospital will no doubt explain things to you. What does surprise me is when you say they are applying for funding?
This drug can't be all that expensive as it's been around since the 1970's.
Also I read that the median is around the same as Revlimid but having got only 7mths from Rev myself I'm not taking much notice of that.
Anyway best of luck with it all Dai and if you want to ask me anything you know how.
Keith.
I've had 2 transplants,first one lasted 2yrs4mths 2nd lasted only 7 mths. During my first harvest they got enough cells for 2 transplants so a second was an obvious choice. 9yrs is excellent remission and because of this even if you only get 1 third of that which seems the average for a 2nd sct it would equate to an extra 3yrs. My choice would be to go for it given your remission record,and let's be honest more time without drugs has to be a good thing.
Best wishes.
Keith.
Hi Sarah
Chest infections are a big problem with us MM patients. I myself have had countless infections and they really do take it out of you. Can I ask you is Henry Neutropenic? (neutrofils less than1.0). This would be the reason he has had so many infections in such a short space of time as I myself did. Oral antibiotics are of little use it needs to be a combination of both oral and infused antibiotics. Forget GP's total waste of space when it comes to MM you have to get into Hospital and as Dai says the sooner the better. As Henry is now in Hospital I'm sure they will sort it out for you both,I certainly hope so. As for the rude receptionist put in a report because that should never happen.
Best wishes Sarah and don't worry Henry will get over it just as I did even though at one point I doubted I would.
Take Care both of you.
Keith.
Hi Scott
Haven't you not yet had an sct ? You're right to be concerned about your kidneys because it does put a lot of strain on all your organs but in particular the kidneys. If they thought a transplant was a possible option thorough tests would be done 2-3 weeks before the procedure went ahead. I went in for a day to be tested before both transplants
but the second one only lasted 7 months. It does feel great not having to take any drugs at all and after my first sct
which lasted 2yrs 4 mths my visits to the hospital were at 6 month intervals as the disease was under control and the only drug I took daily was Bonefos for bone strengthening. This was fantastic but then one morning I woke up and could hardly move and that was the start all over again. The sct is great if it works but after you've had one and then relapse you never ever attain that same level of good health. If you get 18mths-2yrs that's an excellent result,approaching 3yrs and more is better than winning the lottery and nearly as unlikely. I know the doctors all wax lyrical about the sct but the future of the MM fight must be in the development of maintenance drugs or even antibodies that could be injected into the bloodstream to help the immune system fight the disease. Embryo research also looks an interesting option if we can keep the opposition quiet. As far as I'm concerned Scott they can throw what they like at me and I'll take it all because I just want to live and I'm pretty sure you and lot's of other sufferers feel the same. The one thing we don't want to hear is "there's nothing else we can do"
Stay well mate and keep fighting.
Keith.
Hi everybody,
Bendamustine is a chemotherapy drug that damages the DNA in myeloma cells which prevents them from replicating and multiplying resulting in the death of the MM cells. I have had 1 cycle the minimum number of cycles is said to be 6. I was told that it can take some time to show any benefit and that regular blood tests must be taken to monitor the progress and or any sudden drop in the blood counts. At my last check on Monday there was an increase in my Hb and I'm no longer Neutropenic but my Platelets are still low at (34). Yes it is toxic as are all chemo drugs and I felt very tired and lethargic during the first week after having the infusion. I'm not sure how long I will be staying on the drug but I would think for as long as it is working. I have to go for another blood test on Friday to check mainly on the Platelets as they are haven't gone up above 50 for ages. They say normal Platelet counts are from 150-400 and I see people on here with counts of at least 100 Plus being the average counts I've never even got near to. I've always had very low Platelets and nobody knows why!!! A bruise that looks like the map of Africa has appeared on the back of my calf and no doubt I'll get others in time unless this Platelet problem is sorted out once and for all. Other than that I'm still battling on regardless.
Best wishes to all.
Keith.
Hi Andy
I was doing ok but after the 2-4 drubbing my team got today I'm not so sure,should have stayed at home. 60 mile round trip to watch that rubbish?????? Anyway not too bad up to now. Go for blood test Monday to see how things are working and hopefully things are on the rise.
Thank's again.
Keith.
