Hi Dai, yes Prodeserone is a close relative of Dex but not as strong as you don't get the sugar spikes with it like I did with Dex. And you don't get the come downs when coming off them. I don't understand the difference between PP's and Light changes either,it's enough trying to come to terms with what I've got. The got rid of the infection and I'm back at home trying to recover. Temperature is normal once again and I started on Melphalan/Pred on Friday.
Take all
Keith.
Hi Dai, CDT Has stopped working so the next plan is to go on to Melphan/ Prodeserone which is my best chance. The best and only chance I have is to get my PP'S down which are are at 84. Apart from that I''m of. Let's just battle it.
Keith..
PP's (84) Nuets (0.3) Plts (12) are the latest scores. MY own Consultant is back tomorrow and we'll be having a conversation as to what the next step will be. A BMB is certainly on the agenda and just maybe the CDT will start up again if not another option. With PP's of 84 it does appear that the bone marrow is at the route of the problem. Will keep you informed. Stay well.
keith.
Thank's Tom for your support. Without going into the more gory details I'd just like to say I hope you never ever have to go through this or anyone else for that matter. I'm onto my 3rd antibiotic since being admitted because my temperature keeps going up and down. One of the healthcare assistants who's a great lad said he thought the room was very warm when he came in on the morning so I took the bull by the horns and switched all of the heating off and slept commando which was quite cold. Temp was taken at around 6 am and was 38, Maybe I'll try having an ice bath before going to bed LOL.There must still be some sort of infection in my blood which they cannot identify but need to do so in order to get to the bottom of the problem.
Stay well Tom and all others on here fighting this horrible disease.
keith.
Hello to all and thank's for your replies. I am improving now and do feel much better. My Consultant is now on holiday but will be back early next week. I'm having very strong antibiotics and lot's of fluids. One of the problems I was having was that I was anaemic and had lost all co-ordination which meant I was finding it difficult to stand. I collapsed a number of times and my wife noticed the change in me before I did and was worried. All of my blood counts were rock bottom but the real issue is why. Yes Dai I am still on CDT at least until after the BMB has been carried out.I have low Hb/Plts/Nuets and will just not hold up to where they should be.The question is could it be that all the previous treatments have damaged the marrow which is preventing it from doing it's job or is it the combination of all the other failed treatments.I myself think it's a bit of both but we will see what is what next week and I'll post the result as soon as I know. All I can say is this has been a very difficult week and there were times when I thought my number was up. Thank's again guys and I do hope you are having a better time than me.
Keith.
HI David although your MM is starting to creep up it's not blazing a trail 6.7-9.5. is pretty mundane. Maybe your Consultant should be organising a BMB to see how your bone marrow is performing as PP's alone are a strong pointer but not the definitive answer.
Best of luck David.
Keith.
Thank's everyone for your replies. Tom sorry but you misunderstand my Consultant is always available, he is very hands on and keeps me informed step by step. It was just that one day when all the nurses were away doing whatever at that time so if you wanted to speak to anybody there was nobody on hand.
Thank's Tom,Eve and Megan for your replies. I was at the hospital today for Platelet transfusion and Zometa.
My Consultant popped in for a chat and to keep me up to date.I will be having a blood test Tuesday and then depending on the result will be having a BMB. He wants to know wether the problem lies with my own Marrow or the treatment I'm having that's suppressing the platelet production. I'm also having a retinal eye test and have to see the Diabetic nurse. I'm also seeing a dietician as I'm eating everything in sight and still losing weight.
I'll keep you all informed when I know more. I only hope and pray that the PP's start Dropping which will give some support to the treatment I'm taking because there are not many more options left to me. I just have to go with the flow and hope that things work out.
Good health to all.
Keith.
Hi Gina
Yes I've heard of this treatment,in fact it was one of the options I was given after my 4th relapse.
It is given with Dex and thalidomide and has a good record fighting MM. I was given it as preparation for both my transplants but neither really set the world alight,in particular the second which only gave me 5,months remission.
SCT's are becoming a thing of the past and in the states I don't think they even use them.
Good luck to you and your Mam.
Keith.
Hi Dai, I also had GCSF injections when in hospital to boost my WBC. My Hb was 9.1 Neuts 1.8 and Plts 12. I was brought back in for Plts Thursday which should have given them a boost. I will be back Tuesday for bloods and then Zometa just hope I don't need any transfusions. Good to see the Bendamustine seems to be working for you. The problem with my treatment is there is no break from it so just as you start to feel better you're back on it again.Anyway I'll battle on and hope my body can carry on taking the flack. I'm visiting the hospital 2-3 times each week and just need a break from it. Still get tired and spaced out but hope this clears up in time.
Take care Dai and I hope things continue to go well for you.
Keith.
Hi Trish…just caught your post about Peter's relapse. I had a second SCT which only lasted 7,months so it's pretty much the norm on a second transplant. As for Velcade I had all 8 cycles and was in remission after the first 2 but the subsequent SCT flopped within 7,months. Side effects were few and far between and I think this is because Velcade is a proteasome inhibitor and is better at singling out the mm cells for attack rather than hitting everything in the way Chemo drugs do. These are the future going forward.Doctors should not be treating their patients with highly toxic drugs when much better treatments are available albeit more expensive. I have had 4 relapses and on my 5th treatment at the moment,2 of them PI's and they have been the most effective both in side effects and actual success rate. I've been Neutropenic on and off (mainly on) for 3,months and this is all down to Chemotherapy treatment. All these treaments have a common denominator,they lower the WBC count causing the Neuts to fall. I only got out of hospital yesterday spending a week there because of yet another infection.
And yes Helen you have it spot on with regards Velcade and this is why we must go down the PI route.
Best of luck Peter/Trish
Keith.
Hello Dai,I was admitted last Monday and came out today after 6,days. Very similar scenario to yourself,High temp of 39.1 started things off which in my case would not go down. After both oral and injected antibiotics the temp started to drop to 36.5 only to rise again the following day,and it kept on like this until late Thursday when it finally settled down without any spikes. I had two lots of blood cultures,2 bags of blood and one of platelets.I feel better now but at the end of it all they haven't a clue as to what caused it. I continue with the CDT which the dose has now been increased so I'll have to watch that one.
Take care Dai and everyone else fighting this horrible condition.
Keith.
Hi Guys,
messaging from my hospital bed where I was admitted last Sunday. with a temperature which would not
become stable. My bloods have been up and down, in particular platelets which were at 14 and I was
anaemic. I had the shakes and could not get warm. I was put onto 2 different antibiotics,lots of fluids and
had blood and platelet transfusions. I feel like a pin cushion and my arms are covered in bruises.
My temperature has started to get under control only today and it looks like after a chat with the Doctor
I will be going home tomorrow. My PP's are just under 50 so there are signes that the CDT still has life in it
and will be continued next week one week later than schedule. It's been very tough but I think I've just
about kicked it into touch. Don't think I could take many more of these though, I feel 10 yrs older.
Good health to all.
Keith.
This has been the worst week by far since all of this started. Since last Sunday I've been very very ill with little or no energy whatsoever. Spent most of my tine in bed and the rest of the time lying about the house. Today I've just about started to come out of it. My Pllatelets are at 14 and nuets 0.3 so neutropenic again BMB 9.5 which is acceptable.Go for platelet transfusion tomorrow. The Consultant said I need to battle which I agree with but my body is absolutely knackered. Second cycle starts on Tuesday but I just need some respite,an easier time. The weather is getting to me also, I can't get warm. been looking at the Maldives I'd love a month there just to re charge my body. With a such a bad summer I'm feeling very flat I need heat and that would be perfect the other choice is Cape-Verde which is one of my favourite places albeit a good hike and I wouldn't get any insurance but thats not an issue for me. It's just off the coast of Dakar and the weather is the same all the the year round as it's right on the equator what bliss. It's not touristy totally unspoiled and the scenes are breathtaking.Problem is I don't think the doctor would be too happy and I'd be a total fool to go against him but I can always check it out.
Take care all.
Keith.
Hello Wendy/Ozzy I can understand your concern about relapse. I've had 2 sct's the first lasted 2yrs 4months the second 7months when I had velcade which got me into remission in less than 2 cycles although I did all 8.
You must watch out for neuropathy and or spasms in the hands and feet also tiredness and constipation.
In all I've relapsed 4 times with 3 in just a little over a year. After you first step off the first SCT wagon it's all down hill very quickly apart from a small minority of cases unfortunately I wasn't one of them but I do hope you guys are the rare exception to the rule. The problem is when you first have a transplant your body is much more prepared and strong to take the treatment thrown at it but the next time the marrow has taken a hiding and doesn't come back as strong which is why the sct is not as effective and doesn't last as long. All other treatments are simply to suppress the disease with short remissions at the end of them. Mine were Revlimid 5months then Bendamustine which lasted only around 2 months but admittedly was compromised by infections and low blood counts.I am now on my 5th treatment which is CDT. Talking of holidays Wendy and Ozzy I can understand your frustrations I've been trying to get away for ages now but unfortunately i can't get away from the hospital so I'll just have to carry on being a patient patient.
Hope all works out for you both,relapse is a total new phase of this horrible disease but we just have to face it down and fight the fight in a different way.
Keith.
