Well done Andy and keep up with the good health. Lack of sleep with the steroids is my biggest problem at the moment even though I take them very early in the morning. I've had my quota of them for this month so hopefully it should settle down.
Stay well mate and again well done.
Keith.
Hi Tina
I don't have a line fitted although I do have experience with them and not all good. Apart from problems with infection I had a hickman line that wouldn't give out blood even though it would accept infusions into it. So I was at a stage where I was still having to be stabbed every time they needed a sample which was an added annoyance,so it's a consensus of opinion between me and the hospital that we should proceed as we are. Very little is straightforward when it comes to me LOL.
Thank's Tina.
Keith.
Hi Jo
Yes you're right in that as long as a previous treatment has worked for 6 months or more it can then be used a second time which gives us another option in our fight against the dreaded MM. Hope your own treatment works well for you Jo and your Hb starts climbing up. Thank you for your support which is very important to me and all others who are fighting this disease.
Keep fighting and we will beat it into submission.
Keith.
Thank you Andy and to everyone who have sent their kind thoughts and support. I will certainly keep you all informed as to the ongoing progress or otherwise of this treatment. I had my 2nd infusion of Bendamustine yesterday and that is it for one month. I take Prednisolone and Dex days 1-4 and that apart from Ondansetron and 1 tablet per day of Allopuvinol to protect my kidneys that's it as far as the pills are concerned. I feel a bit lethargic but otherwise ok at this early stage and my bloods will be checked regularly, the next test being this Thursday. Particular intention will be given to the Nuets/Hb and Platelet counts and of course the PP's which will determine the progress of the treatment with blood and Platelet transfusions given if and when needed and that's about it for now anyway.
Andy,hope the meeting with the Prof went well for you and once again thank's to all of you and lot's of good health.
Keith.
Hi Jean,I felt very sick for 10-14 days after both my transplants and lost a stone on each occasion as I couldn't keep anything down, but once my blood started to recover I began eating again and felt much better. The problem is the Melphalan which wipes out the bone marrow making your blood counts continue to drop for at least 10 days after the sct. Once the blood counts start to rise you will soon start feeling better and after 1 month there will be a marked improvement then after 2-3 you should be feeling more like your old self but just be careful of infections which can knock you back and slow your progress to recovery.
Sickness after treatmentI must be honest I don't understand. Is this his final cycle or just the first?
Best of luck and good health with a long remission.
Keith.
Hi Liz/Kev,
I too feel sorry that things are a bit of a struggle for you both. I had the full 8 cycles of Rev/Velcade which worked well in achieving remission after the first 2 cycles. I did get spasms in my hands and leg cramps when the Doctor reduced the Velcade dose after the 3rd cycle which gave relief. I went on to have sct and relapsed 7mths later. I went on to have Rev/Dex which got me to zero Proteins but hammered the Haemoglobin,Neuts and Plts and eventually stopped working after 5mths showing PP's at 30.0g/l and 38% MM activity in the marrow at BMB test.
No doubt the Medical team will be looking out for this to nip it in the bud and I hope all goes well with the treatment with a long remission.
Keith.
Hi Sue
My own Platelets have been very low since being on Revlimid 19 at the last count but the docs could not decide whether it was the Rev or the MM that was causing it. After having the BMB it was decided that the Rev had stopped working so I was taken off it. I had blood transfusions but never platelets. TBH I don't think the Doc's are being totally upfront with me with regards to the complexities of these treatments. I still think I should have had a platelet transfusion but when I asked I was refused and when you mention "the condition of the trial"I do start to wonder? The fact is the word trial has not been mentioned in connection with Revlimid or Bendamustine so I would expect a transfusion of platelets and or blood if this was needed. The bottom line is I'm not accepting this rubbish and I will be putting lots of pressure on the Docs to be more upfront.
Tina,
When Patrick was taking Bendamustine was it with Steroids and if so what steroid was it?
At the moment I'm taking nothing until the new treatment starts on Monday.
I just wonder that when I totally run out of options will spending the rest of my days in a bubble be any good?
The problem is I have always wanted to go out with a bang and never a whimper so the bubble hardly fits the bill.
Take care all of you and best of health.
Keith.
Thank you Eve for your kind words. You are right of course with regards to the availability of trials. I would try anything just to get a bit more time and who knows that elusive cure could be just around the corner. I've never been one for taking no for an answer and I'll be looking for new and different options all the time while there is still life in my body. I was hoping for a lot more time from Rev but it wasn't to be so now Bendamustine is my best chance to get me to the next hurdle. I'm feeling pretty much ok at the moment so I'm more than ready for the fight.
Dai is in a very similar position to me with regard to further options and I know he won't take it lying down either.
I'm sure we will both win through this eventually and come out on top.
Take care both of you.
Keith.
Hi Dai
Yes it's 2 days at the hospital with a 30-60 min infusion on each of the days through a cannula and yes steroids are included prednisolone so I've been told. It's a 28 day cycle but the drug along with the steroid is given in a concentrated form therefore only 2 visits to the day unit per month although my blood counts will be strictly monitored and this will be fully explained when I go to the ward on Monday. My blood sugars will be adversely effected no doubt so it will be back to the insulin regime allover again. The consultant said that as long as it stays in the teens he will be happy enough but it's the Hb and Platelet counts that really concern me along with the usual problems concerning bowel movements so I'll need to get on top of that as quickly as possible. The fact is Dai I've been told this is my best if not my only option so I've no choice but to go with it. The biopsy clearly proved that the Rev had stopped working after it showed a MM activity rating of 28% and this combined with PP's of 29gl made the decision a no-brainer. Obviously it wasn't the result I wanted but I just have to take it on the chin and move on.
I hope you can hold on to the Revlimid as I wanted to but what's the point if there is no benefit to us the patients?
I have read the Horizons Infosheet which does say that Bendamustine is not licensed but this is dated 2010 so could this have now changed as there was no mention of this being a trial?
Take care Dai and I will keep you informed.
Keith.
Hi Kerry
After nearly 5 years down the line 2 sct's and 3 relapses I know exactly how Melvin is feeling. I also have bone damage and have had to modify my previously fit lifestyle due to pain issues. However I can honestly say my mind has stayed strong and focussed and that has kept me going but at times it does get hard to bare. I do hope Melvin can overcome these emotions and stay strong for you and the rest of your family. The problem is MM can and does make us feel isolated because we just can't see an end to it but we are not the only ones in all of this and we owe it to our families to stay strong for them as well as ourselves. Today I was told I'm now running out of options after my recent relapse but I will battle on. I start yet another treatment on Monday my fourth in all and I'll stay strong and see where that takes us.
Best of luck both of you and do keep fighting.
Keith.
Thank you Helen/Jo/Eve/Jean/Andy and of course Tom for your replies. You can be sure as soon as I know you will also know as to the outcome of the BMB. I'm not going to speculate as to the what the result will be as there is no point in doing so as what will be will be and that's all there is too it. I am not down about this but more annoyed and will put my opinion forward along with questions that I have ready for tomorrow. I will take a positive attitude in there with me as always and we will see where it all goes.
The one thing I will say is this is the best I've felt for month's and that must be a huge positive in itself whatever may be happening on the inside,my neighbour across the road saying how well I looked. Makes us feel like real frauds doesn't it.
Stay well everyone.
Keith.
Hi Jo
I'd say 3 years 6 is great remission,I got only 7 months from Velcade and that was after second sct.
Second is hardly ever as good as the first,I got 2 years 4 from that one. I have been told to lay off the latest treatment until I have seen Consultant on Thursday when he will discuss the BMB result and decide what to do.
Hope Velcade does the trick for you Jo and give you long remission.
Keith.
Thank's Andy,
Had BMB and blood test and got a call from the ward 4pm with the following results.
Hb up from 8.5 to 9.7
Neuts 0.3 to 0.4
Plts down 20 to 19
PP's not known
BMB not known
I've been told to stop all treatment until I've had discussion with Saunders on Thursday at 9.45.
He will be looking at the BMB ahead of the meeting.
Now I think the Rev has stopped working so the MM is now refractory (back on the move)
I was told when I asked that the Biopsy detais were not known but I don't believe this to be the case.
If nothing has changed why have I had to stop the treatment ?
When a Consultant wants to meet and discuss something it's because there's something he wants to tell me,a change of direction I'll wager. It's easier to get an audience with the Pope than an appointment with him in person.
I don't like mystery or subterfuge I prefer everything upfront and out in the open as all things should be.
What with bleeding gums, low platelets and neuts coupled with chronic fatigue you don't need to be a doctor to work that one out. The first time I relapsed I had BMB on Tuesday and then a phone call the next day telling me that I had relapsed and I was to start treatment on Friday the same week. What happened to that kind of service?
Of course I may be completely wrong and all is well but it's the not knowing that bugs me. How do you guys see it?
Am I just being paranoid or seeing it as it is,either way all will be revealed on Thursday and I'll let you know.
Stay well Andy and good luck with the bloods on Friday.
Keith.
Hi Carol,
Sorry to hear the MM has returned. I've had 2 relapses and just had a BMB today to determine whether I've had no.3 which I will know on Thursday when I see the Consultant to discuss the result of the biopsy. The first sct in May 08
gave me 2yrs 4mnths the second only 7 months and I've been on Rev/Dex since June this year. I don't have any experience of PAD but like all treatments most of them have very similar side effects and it's a case of trial and error. I had Velcade for my second treatment which did the trick getting me into remission but only for 7 months.
The first time is nearly always the best but the further down the line you go the MM becomes wise to the treatments making the remission times shorter.
Best of luck Carol and I hope your next remission is more successful and longer than the first one.
Keith.
Oh Tina I'm very sorry I didn't realise Patrick was no longer with us.
Please accept my apology and do take care of yourself.
This disease is really horrible and I appreciate you bothering to reply to me after what you have been through.
My deepest sympathy and kind regards always.
Keith.
