Hello Marlene,
Shingles and Pneumonia are certainly not recommended but believe it or not 20 months isn't bad and beats my 7 by some way. SCT'S are a bit of a lottery with some patients getting up to 7 years then there's me with 7 months.
I had Velcade for my second treatment and it worked very well. I had all 8 cycles before going onto a second sct but I've not heard of anyone having more than 8 cycles but then maybe that's now changed?
Anyway I do hope that Velcade works well for Barrie with a long remission.
Take care .
Keith.
Hi Tina
Thank's for that,I went to the hospital today to pick up my meds and was told they want me in for a BMB tomorrow to find out why my haemoglobin is low, 8.1 at the last count. Something is going on and they need to find out and quick. As for the Platelets every time I ask at what level is a transfusion required I get a different answer. I've heard below 50,below 30 and mine are currently at 20 and now they say 10 is the level,they either don't know themselves or they are telling me a load of rubbish,either way I'm not happy. One thing I can't stand is opinions I want answers.
When it's your life on the line it's paramount that the medics are all in agreement.
Thank you again Tina and give my regards to Patrick.
Keith.
Dai, I really do hope it all works out positively for you and that you start having some well deserved good health.
It is frustrating when things hit the buffers and come to a halt and then being told there's nothing else to try.
You mention previously tried treatments which I have heard mentioned but never spoken to or read about anyone actually trying them let alone having success with. I am very keen to follow your case as it could well be my own situation at some point. Just have to polish the barrel on that shotgun LOL. Like I've been saying I feel well enough even though my bloods are not where they should be but the whole thing I have to admit can be worrying. I will say one thing. I've never had any problem with regards to treatment and certainly cannot complain with the care I've received but if I was ever refused treatment because of cost there's absolutely no limits to what I would go to in order to get the treatment that I need. Only on medical grounds should treatment be withheld when it could have an adverse effect on the patients health and NEVER EVER cost. I still remember the words and I even have it in print
quote:-"it's a travesty that cancer patients should be denied access to life saving drugs and if elected we intend on setting up a fund of £50m for the first year rising to £200m to allow these patients access to the treatment they need" and who said it? none other that our Leader David Cameron and we should all hold him to it.
That's my rant over…Take care Dai and stick with it as I know you will.
Keith.
Hi Dai,Eva and Phil thank's for your replies. No Eva I'm not having platelets only blood. Platelets are only given when they drop below 10 and mine are currently at 20.Went to hospital today for transfusion, 2hrs and 7 attempts by 4 different people and the cannula was eventually fitted so it ended up a 6 hour day. Dia how long have you had the C-Diff ? and when you say there is no more treatments or trials left for you to try surely this can't be right ?
There must be something out there you can try. When you say there's nothing do you mean there is actually nothing or nothing that has been licensed ?
Hope things get sorted out for you and quick.
Good health to all.
Keith.
I love your sense of humour David and who knows the new you might just be what's needed LOL.
Mind you whatever you do stay off the HRT HAHA. I'm in for a blood transfusion tomorrow and I'll be trying to find out more as to what's going to happen.
Thank's again David and you take care.
Keith.
Hello Marlene,
I have relapsed twice and had 2 transplants which is the limit for me. I am now on Dex/Revlimid for as long as it works. Revlimid like most MM drugs knocks the Neuts for six which makes you very open to infection. I've had that many I can't remember which ones I've had and when I got them. If I were you I'd go for the trial and take extra care when mixing with people and avoid confined places and people infected with colds I know easier said than done.
My immune system is shot to pieces and I've been neutropenic on and off for the last 4 months. I try to do all the right things but the WBC count has been flat more or less throughout the treatment.
I hope things turn out good for you and your decision is the right one.
Take care.
Keith.
Hi all, I am currently on the 5th cycle of Rev/Dex and had my last blood test on 22/10/12 which showed Hb 10 WBC 2.1 Plts 37 Neuts 1.2 and PP's 2.13gl. I will be having the next check on 05/11/12. Platelets and Neuts are the main concern so I'm hoping there's an upward trend at the next check. I feel ok in the main although I have picked up a cold over the last couple of days which has left me with a horrible cough. I am still off tinzaparin because of the low platelet count which will be reviewed on Monday. When I had my stem cell harvest they got enough for 2 transplants which I have now had. Like you Dai I only got a matter of months in terms of remission so now it's a life of going from one treatment to another until they run out and then what? I know the line from the consultants is one sct is the norm and in rare cases two but what about 3 if enough cells can be mobilised from a second harvest or even a donor sct if a suitable match can be found? Has anyone heard of any other possibilities when the options run out? I feel that N.I.C.E. will be having the last word on whether I live or die and that makes me feel very uneasy.
When you talk about Kyprolis it gives me hope but will we get it in time? With all the uncertainty going on regarding drugs being made available or not I can well understand patients feeling depressed with the uncertain future.
We don't have the time to wait so if the treatment is available then we need to have it asap.
Good health to all.
Keith.
Hi David, I've relapsed twice and on both occasions the main problem I had was increased bone pain.
PP activity on it's own is not the deciding factor and only after a bone marrow biopsy can the doctor really tell what's going on. My PP's are checked every month and I can't understand why you have to wait until 12th Nov.
I wouldn't worry about it because it's most likely nothing more than a blip as infections are always a problem where MM is concerned,have you checked your temperature. Also drinking plenty of water will help flush out the proteins and clear up the infection.
Take care mate.
Keith.
Cheers Tom I can always rely on positive vibes from you.
Had Zometa today and My next blood test will be in 2 weeks unless anything happens in between.
The Doc is pleased with my latest blood results apart from the Platelet count which will be watched carefully.
PP's are at 2.15gl slightly up from Zero but only a minimal fluctuation so no worries there.
Still off the Tinzaparin until Platelet rises above 50 so watch this space.
Hope you and everyone else is feeling well.
Thank's again…..Keith.
Hi Andy, nice to see you looking well today at the day unit. As you say the Prof has explained all about Allo sct's.
It's all about the match of course and when a close one is found then the outcome can be excellent with a long remission. I do hope they can sort it out for you after all the setbacks you have had along the way. I know that the recovery can take longer because of GVH and the higher risk of infection but all things equal the end result will be well worth it.
Take care both of you and good health for the future.
Keith&Sue.
Update as promised…Had blood test this morning prior to Zometa on Wednesday. Got a call with the results which is good news. HB up from 8.5 to 10, Neuts up from 0.6 to 1.2 and Platelets up from 32 to 37. Still have to stay off Tinzaparin until Platelets get up to a nearer normal level. Sugar has stabilised to single figures and temperature has stayed at around 36 so all seems to be ok although I stay vigilant just in case of any changes. As I've said previous this is the best I've felt for some time and long may it continue. My weight has levelled out at around 75 Kilos and after reducing the steroids down to just the first 4 days of each cycle thereby allowing my body to recover the muscles in my arms and legs have now become stronger.
Hope all is well with everybody.
Keith.
Hello Dai and thank's for your comments on my post but I just want to clear something up.
I went to the hospital on Monday for a blood test before collecting the meds for my 5th cycle of Dex Rev.
This treatment although knocking the PP's down to virtually nil has also battered my blood counts in particular the Platelets/Neuts although the word Neutropenic was never actually said until I was admitted into hospital with a temperature of 38.5 and feeling quite ill. You know the saga about the diabetes so I won't go over old ground on that one but cutting the Dex to the first 4 days of the cycle 20ml on each of the days seems to have done the trick with single figure glucose levels and no more Insulin. When the hospital phoned me about my blood results on Mon the MM nurse had already discussed my results with the Consultant prior to contacting me and he said I was to stop my Tinzaparin injections due to the low Platelet count but that they did not want to change anything else until after my next blood test on Mon but be wary of possible infection and to check my temperature on a regular basis. As for blood transfusions it was mentioned but I did receive two just before my recent admission into hospital with little if any improvement but not a platelet transfusion. I did overhear 2 nurses discussing at what point are low platelet counts considered acute enough to warrent hospital treatment, some doctors saying below 70 while others say below 30 which is the level apparently taken by my own Doctor. (quite a difference between the two figures). What I will say is my present Consultant seems to take a somewhat different approach to the previous one I had who did seem to leave less to chance although that's not to say my present Doctor is any less competent but he does have a different way of doing things,of course the outcome is the most important thing and as I say I'm feeling pretty good at the moment.
I'll keep in touch Dai and once again thank's for your reply.
Take care.
Keith.
Hello Nicola, as I said to you in a previous post I was feeling very similar to your Dad regarding side effects.
Try not to worry about it and you are right it is the steroids and a week is no time at all with withdrawal symptoms.
These like all things MM vary between patients and when your Dad's body adjusts to having the drugs stopped he will start to feel better and this I hope very soon. I also looked terrible like a Zombie and totally lifeless but battled through it until it started to improve albeit slowly. Dex can mask infection and only when you stop taking them do things like coughs and the rest rear their ugly heads. I had one myself which lasted for 3 weeks and made me feel very weak but petered out eventually. I had my routine blood test on Mon which showed that I'm Neutropenic with my other counts all low. I should be feeling tired and fatigued but I don't in yet when my counts were so called near normal I felt dreadful so how do you work that one out? I can't. How are your Dad's counts at the moment?
I'm back at the hospital next Mon for another bloot test to see if there is any change as I only just started my 5th cycle of Dex/Rev Tuesday. The Dex will knock me back but it's only for the first 4 days of the cycle so I should be feeling better by Mon/Tues next week and I hope your Dad is also feeling better by then.
Don't forget to keep in touch with the Consultant and continue to push for answers to your Dad's condition.
All the best.
Keith.
Hi Megan, I had 8 cycles of Velcade and although I didn't suffer neuropathy I did have spasms in my hands and feet after the 3rd cycle. The dose of Velcade was reduced and it did settle down. With Neuropathy you must catch it early as sometimes it can't be reversed. Inform the Consultant as soon as possible if you haven't already done so.
Best wishes.
Keith.
Thank's Tom for your very prompt reply. I must say you are always a great source of inspiration to us all.
Isn't it strange though that when they were telling me only a few weeks ago that my bloods were fine I was feeling absolutely awful while now? Sometimes I just don't get this whole Myeloma thing and I even wonder if the Docs do.
Keith.
