Hi Keith
I hope this new treatment works and gives you a decent remission. You've been through the mill recently you deserve some respite. My neutrophils were 0.6 that last blood test up from 0.4 so like you I've been Neutropenic for a few weeks now. My other bloods are ok now and my platelets gave gone up to the mid 120s. Hopefully my Neuts will start to climb too.
My PPs didn't move for a few cycles of Revlamid I'm not sure now if it was the addition of cyclophosphamide that started them downwards. Though there was a slight climb in my last but one results – still waiting for my last result. I think it was Dai whom said Revlamid can be a slow starter.
Anyway he I hope bendamustine works out to be the drug for you and the side effects are kind to you. We're all rooting for you good luck and take care
Andy
PS. I'm off to see Prof Jackson on Monday for an update on the search for a donor and maybe a firmer time scale for my Allo :-/
Hi Carol
Sorry to hear that MM has reared it's ugly head again. I had 2 cycles of PAD when I had no response to my original treatment CDT. unfortunately for me I had no response to PAD either or any other treatment till I was put on Revlamid, cyclophosphamide and Dex.
PAD for some reason is Bortezomib (Velcade) , Doxorubicin and Dex. Where they get the PAD from I don't know. You'll need a Hickman line inserted for the Doxorubicin. I hope it works for you. I didn't get any side effects but PN is a common side effect of Bortezomib (Velcade).
Good luck
All the best
Andy x
Hi Keith
I hope everything goes well with your BMB tomorrow and Wayne is gentle with you. Hopefully when you get the results you will be able to start to get your bloods back to normal.
I had my latest blood test Friday – everything was ok except my neutrophils which are now down to 0.4! On my rest week now so they're going to make a decision on what to do after next Friday blood results. Till then it's watching old movies and keeping away from sneezing people.
Take care
All the best
Andy
Hi Keith
Sorry to hear your struggling with your bloods. My last blood test showed everything had recovered to acceptable levels except my neutrophils which were 0.6 I will have to see what they are on Fridays test. I'm assuming it's the Revlamid but the consultant is guessing it maybe the cyclophosphamide. It may also be a result of all the antibiotics I was on for all the post holiday infections. So Fridays bloods may shed some light on the cause. Fingers crossed the neuts will have recovered a bit. I hope everything goes well for you and Dai with the neutrophils and they start to recover. As Tom would say "onwards and upwards"
All the best
Andy
Hi Vicki & Colin
Just letting you we're thinking about you. We hope everything goes well and Colin doesn't suffer too badly with side effects and is soon on the road to remission.
All the best
Andy & Steph xx
Hi Vicki & Colin
We hope everything goes to plan tomorrow and that Colin sails through the sct with the minimum of side effects.
All the best and good luck
Andy & Steph xx
Hi
I would like to thank everyone for all the good wishes. I must admit the thought of a sct had slipped from my radar and I was just coasting along. The meeting with the Prof. On Monday has brought it back into sharp focus. I knew an auto sct was off the cards for me and that an allo sct was ultimately the only way forward for me. Never the less when he said we need to do it ASAP and possibly early in the new year it gave me a fright. I soon got over the shock of the suddenness of the announcement and the pitfalls he highlighted to knowing this is what I wanted and really my only option. No less scary though. I now have a plan and a goal to work towards which will keep me focused and maybe a little jittery.
Thanks once again for all your support.
As the wonderful Tom would say "onwards and upwards"
All the best
Andy
Hi Kerry
I think everyone has those feelings as a carer. I'm the one with MM but in a way my wife is suffering more. She has to worry about me, about her job which includes a hours drive either way, cooking, walking the dog etc etc and most of all what the future holds. I have damage to my back so I hardly ever drive now so I require lifts to the hospital which fortunately I have a good friend who ferries me about but it seems well it actually happens every time my wife books a days holiday I suddenly need to go to hospital – sods law – she never gets a break! Now I've been referred on to a professor at another hospital which requires my wife to work from home so she can take me in – its nearly a hour a way but it's also right near where she work! More sods law. There just doesn't seem any relief for the carers and if you add children into the mix well I don't know how you cope. All carers have my utmost admiration. Please come on here and rant and rave, shout, scream if you want let it all out. You will find support and advice on here – WE UNDERSTAND – and we would like to help. I would also recommend you speak to the specialist nurse about seeing a counsellor – talking things through with a sympathetic stranger will help greatly.
Take care
All the best
Andy xx
Hi Polly
Sorry you have to start treatment. I started mine just over a year ago and have been through several different treatments but one thing has remained a constant that is the injections. I self inject tinzaparin daily to prevent blood clots I have from day one of my treatments. It's not too difficult and only sometimes a little bit painful but only rarely. Your specialist nurse will show you how to do it correctly. I do get the occasion bruising even though I don't rub the injection site. With a little luck you won't gave to inject to long before you go for sct. I find the side effects of the drugs a bit more difficult to live with than the injections but everyone is different.
Good luck with you myeloma journey everyone's is different and I hope your soon in remission.
All the best
Andy xx
Hi Ali
We're pretty boring when we go to Greece we go to the same place, Kefalonia, same hotel, eat at the same restaurant and just laze by the pool reading whilst catching some sun! We used to go for long walks too but my back damage has put paid to that. Holiday insurance is a bit steep but necessary and planes are a good place to pick up alsorts which I did but didn't effect me till we got back fortunately. The week away was great the hospital visits afterwards and antibiotics afterwards not so good but I would do it again tomorrow.
Talking to Helen over a coffee helps us get things straight in our heads and is very supporting it's good to hear others views and to be able to talk things over with someone who is on a journey as bumpy as your own. I just hope Helen get as much out of our little chats.
Take care Ali & Mum
Andy xx
Hi Keith.
Good news about your blood tests. Now all you need is your platelets to continue climbing. Then you'll be back to stabbing yourself again 😉
Good luck Keith
All the best
Andy
Hi Vicki & Colin
My paraproteins are at their lowest level since diagnosis they are now at 24 – well they were that was the news we received when we returned from Greece – that's a fall of 8 from my previous reading of 32! Not a great fall or reading but it's going in the right direction. Fingers crossed for last Fridays blood test! Oh I found this out whilst paying an unscheduled visit to the hospital the day after we got home from Greece. I had a cough, cold and a couple of infections with the accompanying high temp! I've been on numerous antibiotics but managed to avoid staying in hospital. I had to visit the hospital 14 days consecutively sometimes twice a day for ab infusions and injections but thankfully that's all finished now.
Ali I agree with Helen. We with MM have to enjoy things we want to do and not live in a bubble. Greece was my first trip abroad for 18 months, we used to manage 4 times abroad a year before I was diagnosed, and it was great I felt good there I was able to put mm at the back of my mind and enjoy myself. Even though I could only manage sitting by the pool and reading. I know when we got home I had problems but they could of occurred being back home and wrapped up in cotton wool. We are looking forward to going to Greece again in the spring after a regular trip to the lakes.
Live life to the max
All the best everyone – and Colin I hope you sail through your transplant
Love Andy & Steph xx
Dear Rachel
I was shocked and saddened by the untimely death of Paul. We where having a similar MM journey struggling to get to SCT as the medics tried to find the right drugs. I went through the DTPace regime before Paul and again it failed me. I must admit when DTpace worked for Paul I was a touch jealous but also pleased when it worked for him. Like others I will miss his posts and support on this forum he was a good friend to us all.
Take care
Andy xx
Hi Vicki and Chris.
They do like putting hurdles in your way. Considering what you've both been through to get to this stage I think this latest blip will be a piece of cake and those cells will be back where they belong in no time at all.
Sorry I haven't posted for a while been fighting of a few infections.
Good luck with the transplant
Andy xx
Hi Pat
I got my blue badge through my local council and found it straight forward. I have the higher rate DLA so I qualified automatically. I was also entitled to a bus pass as well. I'm 54 😉
Good luck with your application.
All the best
Andy x
