Myeloma Forum | KeithHindmarch | Activity https://forum.myeloma.org.uk/members/KeithH17/activity/ Activity feed for KeithHindmarch. Tue, 14 Apr 2026 20:56:26 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 8525f5ffcd2fe31df783de5a4b725af2 KeithHindmarch replied to the topic Last Chance Saloon in the forum Treatment http://www.myeloma.org.uk/forums/topic/last-chance-saloon/page/2/#post-101945 Sun, 10 Mar 2013 19:34:37 +0000 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…[Read more]

]]> cdd39f5e20e30ac1007c72d6922f621e KeithHindmarch replied to the topic Last Chance Saloon in the forum Treatment http://www.myeloma.org.uk/forums/topic/last-chance-saloon#post-101942 Thu, 07 Mar 2013 19:21:19 +0000 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..

]]> 8bc8a380f359782ee0c9b18872dd00d8 KeithHindmarch replied to the topic Last Chance Saloon in the forum Treatment http://www.myeloma.org.uk/forums/topic/last-chance-saloon#post-101940 Mon, 04 Mar 2013 23:56:19 +0000 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…[Read more]

]]> 4dcfb00741fa90d4650e81a3db1ffbc2 KeithHindmarch replied to the topic Last Chance Saloon in the forum Treatment http://www.myeloma.org.uk/forums/topic/last-chance-saloon#post-101937 Sun, 03 Mar 2013 09:58:44 +0000 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…[Read more]

]]> f3efa52d6b792e7c279303c52ed8da16 KeithHindmarch replied to the topic Last Chance Saloon in the forum Treatment http://www.myeloma.org.uk/forums/topic/last-chance-saloon#post-101935 Sat, 02 Mar 2013 11:47:02 +0000 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…[Read more]

]]> b6994c1d6068bee8d50fc98dc660d35d KeithHindmarch started the topic Last Chance Saloon. in the forum Treatment http://www.myeloma.org.uk/forums/topic/last-chance-saloon Thu, 28 Feb 2013 20:24:59 +0000 HI Guys
back on the ward again with sepsis. problem is my bone marrow is knackered. My platelets are rock bottom as well as my nuets and Hb.I've had 4 packs of blood and 2 packs of Plts and due to have A BMB to try and find out if the problem is with my own marrow. My consultant also said would I want to be resuscitated if my heart stopped. Now…[Read more]

]]> 4e17bb32256e7a4265fe20801592ac8d KeithHindmarch replied to the topic MRI scan in the forum Treatment http://www.myeloma.org.uk/forums/topic/mri-scan#post-101808 Fri, 22 Feb 2013 17:05:47 +0000 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.

]]> d9d15fdea194f821fb68d896e3ea72ff KeithHindmarch replied to the topic Platelets will not rise in the forum Treatment http://www.myeloma.org.uk/forums/topic/platelets-will-not-rise#post-101792 Fri, 22 Feb 2013 14:42:30 +0000 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.

]]> cd33f99c0c31b662a179b7d45720f42b KeithHindmarch replied to the topic Platelets will not rise in the forum Treatment http://www.myeloma.org.uk/forums/topic/platelets-will-not-rise#post-101790 Wed, 20 Feb 2013 22:14:26 +0000 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…[Read more]

]]> d91dc32cd59acc8ffbbb6990a2bf1227 KeithHindmarch started the topic Platelets will not rise. in the forum Treatment http://www.myeloma.org.uk/forums/topic/platelets-will-not-rise Tue, 19 Feb 2013 22:26:57 +0000 Had blood test today and Hb was at (9.4) Neuts (0.9) Plts (12).I've searched the net for reasons and remedies for this but the information is very patchy although it does say that you can feel very ill if the drop too far.I'm going in to have yet another Plt transfusion tomorrow along with Zometa. This has been another very hard week but I battle…[Read more]

]]> 7efd6e5d94736ecb993064fb3a85ea6a KeithHindmarch replied to the topic Melphalan in the forum Treatment http://www.myeloma.org.uk/forums/topic/melphalan1361058848#post-101747 Sun, 17 Feb 2013 21:35:44 +0000 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…[Read more]

]]> a02a86ca12c6f50d6fb35b0268479f44 KeithHindmarch replied to the topic Good News, Bad News and Old News Just Out... in the forum Treatment http://www.myeloma.org.uk/forums/topic/good-news-bad-news-and-old-news-just-out#post-101691 Sat, 16 Feb 2013 01:22:46 +0000 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…[Read more]

]]> 70352d94833b6dd520d48285578d7c3e KeithHindmarch replied to the topic Peter has relapsed / info needed on Velcade in the forum General http://www.myeloma.org.uk/forums/topic/peter-has-relapsed-info-needed-on-velcade#post-94350 Mon, 11 Feb 2013 20:58:20 +0000 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…[Read more]

]]> 59e56fa97301aeb6c68499b0b0b17860 KeithHindmarch replied to the topic Here We Go Again in the forum Treatment http://www.myeloma.org.uk/forums/topic/here-we-go-again1359065333/page/2/#post-101562 Sun, 10 Feb 2013 22:43:11 +0000 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…[Read more]

]]> 09094228f06af749671277587085cc8b KeithHindmarch replied to the topic Here We Go Again in the forum Treatment http://www.myeloma.org.uk/forums/topic/here-we-go-again1359065333/page/2/#post-101559 Sat, 09 Feb 2013 18:45:54 +0000 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…[Read more]

]]> c7561b1062d27446bc311431fe37bd13 KeithHindmarch replied to the topic Here We Go Again in the forum Treatment http://www.myeloma.org.uk/forums/topic/here-we-go-again1359065333#post-101556 Sun, 03 Feb 2013 01:01:49 +0000 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…[Read more]

]]> 1d42a689bc55be4a5de68b82654b2956 KeithHindmarch replied to the topic Relapsing in the forum General http://www.myeloma.org.uk/forums/topic/relapsing/page/2/#post-94174 Sun, 27 Jan 2013 23:16:36 +0000 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…[Read more]

]]> 0b85487926eba99959168eeb88794807 KeithHindmarch replied to the topic Here We Go Again in the forum Treatment http://www.myeloma.org.uk/forums/topic/here-we-go-again1359065333#post-101554 Sun, 27 Jan 2013 16:16:06 +0000 Thank's for all your kind comments. Yes Andy I do hope it's only for a blood test but I'm in for one of those on Tuesday so the timing would suggest another blood transfusion but it will depend on how the Tuesday test goes.
Wendy my next PP test will be in around a week's time end of my first cycle.Kyprolis what's happening with this one? I've…[Read more]

]]> 5c7890c50371ee923b990185b9f6ad47 KeithHindmarch replied to the topic Croaky/husky voice on Dex in the forum Side-effects http://www.myeloma.org.uk/forums/topic/croakyhusky-voice-on-dex#post-105111 Thu, 24 Jan 2013 22:58:42 +0000 Yes like everyone else I had and have a husky voice at this very moment. I also have a very bad cough but I'm back on the Dex Sat which will get rid of it. The husk is nothing compared to the cough.

Keith.

]]> 1b521a83e8c5c4ea78516b5b188fcac8 KeithHindmarch started the topic Here We Go Again. in the forum Treatment http://www.myeloma.org.uk/forums/topic/here-we-go-again1359065333 Thu, 24 Jan 2013 22:08:53 +0000 Had blood test today and guess what Hb down from 9.1 to 8.3 And Platelets down to 19 with Nuets at 1.3.
So the upshot is I'm back tomorrow for blood&platelet transfusions with around 5 hours in hospital if you take the crossmatch into account which takes about an hour. This is 5 times in as many weeks. I can't get away on holiday because of my…[Read more]

]]> 7bb17299caa671bedb1e3835ed9f872c KeithHindmarch started the topic First Week of CDT Completed. in the forum Treatment http://www.myeloma.org.uk/forums/topic/first-week-of-cdt-completed Mon, 21 Jan 2013 22:30:40 +0000 Hello to all,
First week of treatment completed without any real problems apart from severe abdominal pain which started Sunday morning. Had blood test today with the following results Hb(9.1) Plts(13) Nuets(1.5) WBC(2.2). Will be having plts transfusion along with Zometa tomorrow. Because of the more acceptable Hb count I don't think I will need…[Read more]

]]> 856832690e5963c2709cd25a6f18922c KeithHindmarch replied to the topic Round 11 RCD in the forum Treatment http://www.myeloma.org.uk/forums/topic/round-11-rcd#post-101485 Fri, 18 Jan 2013 20:49:08 +0000 Hi Andy,good to see you in fine fettle as usual LOL. For 2 guys who supposed to be ill we don't look too bad do we? Nice to see you also Steph. Starting to feel tired now and no steroids for the next 4,days
the comedown starts as of now. Patrick was in later and is starting a new treatment in order to get his marrow activated, all very…[Read more]

]]> 4edb5d501e8c50c1a29180a7c4d98223 KeithHindmarch replied to the topic Relapsing in the forum General http://www.myeloma.org.uk/forums/topic/relapsing#post-94162 Mon, 14 Jan 2013 22:54:04 +0000 Hi David
I'm not sure your PP figure suggests a relapse before having a BMB first to confirm.
After my first SCT I achieved Zero PP's which stayed that way for nearly 2 years before going up to 5 and then 28 at which point I had a BMB which confirmed a relapse. Your own PP figure is not outlandish and could be a blip either way no Consultant…[Read more]

]]> 5f186360adabd756196c3c49fb161799 KeithHindmarch replied to the topic Relapsing in the forum General http://www.myeloma.org.uk/forums/topic/relapsing#post-94159 Sun, 13 Jan 2013 21:43:13 +0000 Hi Wendy
only just read your posting about relapse. I've relapsed 3 times as you no doubt already know. My treatment started
around 2 months from each relapse although the actual relapse date is difficult to determine. I developed pain in my ribcage and generally felt tired and unwell. I had a blood test and bone marrow biopsy which showed PP's…[Read more]

]]> 228f3f6c9c749bbced5b2d706feb602c KeithHindmarch replied to the topic Velcade in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade1357981492#post-101476 Sun, 13 Jan 2013 00:25:59 +0000 Hello Maurine,I found Velcade to be very receptive and so worked very well for me.I did get tired during the day and there was some constipation but that's par for the course with most if not all of these treatments.

I start with CDT Tuesday and hope it does the trick as I haven't many options left.

Hope the Velcade works for you…[Read more]

]]> de7cebff94655f8c5b11533a27ce929b KeithHindmarch replied to the topic Question about blood test results in the forum Treatment http://www.myeloma.org.uk/forums/topic/question-about-blood-test-results#post-101446 Fri, 11 Jan 2013 23:56:30 +0000 Hi Sarah Jane,now you don't want figures like mine but here they are for what it's worth.

WBC(2.5)
Hb(7.5)
Plts(14)
Neuts(1.0
PP's(55)

Of course I'm way down the road, 2 SCT's, and 3 relapses inside 12 months but I'm still battling on.
Once your first SCT fails that's when the fun really starts and if you do manage to get a second It's…[Read more]

]]> 5b4b085118b5479503048c675ee7fc25 KeithHindmarch started the topic Yes it has bombed. in the forum Treatment http://www.myeloma.org.uk/forums/topic/yes-it-has-bombed Thu, 10 Jan 2013 21:36:11 +0000 Hi guys
Had bloods taken today and also managed to see my Consultant. PP's now up from 28-55 says it all Hb (7.5) Neuts (1.0) Plts (14) so it's official Bendamustine is dead long live Bendamustine.The Doc did say that my Marrow has just about had it after all the treatments I've had 3 relapses all inside a year shows that the treatments are no…[Read more]

]]> e95727a467b74350005809eea61004ad KeithHindmarch replied to the topic Bendamustine Bombed? in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-bombed#post-101426 Tue, 08 Jan 2013 14:34:49 +0000 Thank's Helen,Wendy and Eve for your support. I did mention Velcade to the Consultant and he did say it could be a possibility but no more than that. CDT and MPT were the more likely options. I got a phone call this morning asking me to come in on Thursday for a blood test just in case I need another transfusion which would be done on Friday. I'll…[Read more]

]]> 824cda5ddcef1d4cee32665473c571b4 KeithHindmarch started the topic Bendamustine Bombed?. in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-bombed Mon, 07 Jan 2013 20:37:45 +0000 Went to hospital today for blood test PP's were also checked results on Wednesday.
At the last two checks they were 9 and then up to 28 so another reading was taken today and I go back Friday for a consultation and further blood tests. the other reads are as follows Plts (20) Hb (8.4) Lymphs ( 0.7) Neuts (1.3) WBC (2.5). Consultant is not too…[Read more]

]]> 90874e6356243e20b1708b2845162407 KeithHindmarch replied to the topic Bendamustine C1. in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-c1#post-101408 Sun, 06 Jan 2013 22:35:36 +0000 I had my 2nd cycle of Bendamustine Thurs/Fri just before New Year and since then I can't say I am firing on all cylinders. I am having blood tests twice weekly which is killing my Veins I've also had two blood transfusions and two platelet transfusions in the last two weeks. I feel very tired and have had very bad abdominal pain. My Hb and…[Read more]

]]> 3c1a7cd95b8c9a02a44e1304ea8a7224 KeithHindmarch replied to the topic Bendamustine 2nd Cycle in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-2nd-cycle#post-101391 Fri, 28 Dec 2012 20:55:05 +0000 Thank's Tom, You're a real trouper that's for sure.

Take care mate and have a great New Year, just make sure you watch the demon drink lol.

Keith.

]]> 283dc007d58015164df3119165b08881 KeithHindmarch replied to the topic Bendamustine 2nd Cycle in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-2nd-cycle#post-101389 Fri, 28 Dec 2012 19:50:38 +0000 Thank's to all for your kind replies.

I had my 2nd infusion of Bendamustine today and received the results of my latest Blood test taken yesterday.
Platelets up from 14-31 (no doubt the unit of Platelet concentrate helped) Neuts at 3.6 the highest for 5 months although Hb is still a bit sluggish 8.2 down to 7.7 having Blood Transfusion Monday…[Read more]

]]> afe0aefe4f85c96704041d60d9524957 KeithHindmarch replied to the topic Bendamustine 2nd Cycle in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-2nd-cycle#post-101385 Fri, 28 Dec 2012 01:03:18 +0000 Hello Helen
always lovely to hear from you.
You say you have been sledgehammered into remission,in my case it feels more like submission lol.
When I went to the hospital there was 3 of our support group all sitting there with heavy colds.
Well it's that time of year but we always seem to get it much worse than the run of the mill…[Read more]

]]> 14190e7a9bb0d6313fd2cde9d95cf52f KeithHindmarch started the topic Bendamustine 2nd Cycle. in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-2nd-cycle Thu, 27 Dec 2012 22:02:11 +0000 Hi everybody

Christmas went very well although I could have felt a bit better. Platelets now down to 14 and falling. I've been blowing blood from my nose although I'm no longer spitting it as the chest infection has now abated.
I saw my Consultant today and told him how I've been feeling and he said although my Platelets are very low it was…[Read more]

]]> e662e847812378161271fe2fe677c200 KeithHindmarch replied to the topic Lowest Platelets On Record? in the forum General http://www.myeloma.org.uk/forums/topic/lowest-platelets-on-record/page/2/#post-94109 Mon, 24 Dec 2012 00:55:10 +0000 Thank's for that Eva and I'll be checking it out tomorrow when I go in for more blood tests.

Best Wishes Eva.

Keith.

]]> 4973588419bc7ea2ecc6aeadfd1fe17b KeithHindmarch replied to the topic Lowest Platelets On Record? in the forum General http://www.myeloma.org.uk/forums/topic/lowest-platelets-on-record#post-94098 Mon, 24 Dec 2012 00:51:07 +0000 Hi Michele

It's interesting what you say about the Spleen. During my last but one admission into hospital one of the Doctors after examining me asked if I had an enlarged Spleen and of course I said no as during all the tests I've had this has never been mentioned before but after what you say it's got me thinking. I did ask him why he said…[Read more]

]]> 3a3b255cf3f78fd53d6bb5ffa427b9b8 KeithHindmarch replied to the topic Charity night result. in the forum General http://www.myeloma.org.uk/forums/topic/charity-night-result#post-94117 Mon, 24 Dec 2012 00:24:30 +0000 Excellent stuff Andy everything helps in the fight.

Keith.

]]> 438f967fdce8995244e87dc3ec146e49 KeithHindmarch replied to the topic Lowest Platelets On Record? in the forum General http://www.myeloma.org.uk/forums/topic/lowest-platelets-on-record#post-94107 Mon, 24 Dec 2012 00:18:14 +0000 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.

]]> 9df93b412196ba5961b5fb2b273d6c43 KeithHindmarch replied to the topic Lowest Platelets On Record? in the forum General http://www.myeloma.org.uk/forums/topic/lowest-platelets-on-record#post-94096 Sat, 22 Dec 2012 14:34:29 +0000 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…[Read more]

]]> 6622a4582f18449fd328abb18d69e142 KeithHindmarch replied to the topic Appointment results in the forum General http://www.myeloma.org.uk/forums/topic/appointment-results#post-94072 Fri, 21 Dec 2012 23:28:13 +0000 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…[Read more]

]]> 729a6812f88cd72dd89e7d09e6942b4d KeithHindmarch started the topic Lowest Platelets On Record?. in the forum General http://www.myeloma.org.uk/forums/topic/lowest-platelets-on-record Fri, 21 Dec 2012 23:12:05 +0000 I had a blood test today which showed Hb (8.9 )Neuts(2.1) WBC (2.9) Platelets (18).
I received a call from the hospital saying that because of the low Platelet count I have to go back Monday 11am for another test. I have ALWAYS had low Platelets but this is an all time record low and I wondered if anyone else has had such a low count. The…[Read more]

]]> 6c556d8c4b7f2438cca8694fcb99c7fc KeithHindmarch replied to the topic Zometa 'flu' in the forum Side-effects http://www.myeloma.org.uk/forums/topic/zometa-flu#post-105035 Wed, 19 Dec 2012 13:42:17 +0000 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.

]]> e1a8d39b001f891dd8d913e2e6237ba1 KeithHindmarch replied to the topic In Hospital... Again! in the forum Treatment http://www.myeloma.org.uk/forums/topic/in-hospital-again#post-101356 Wed, 19 Dec 2012 01:42:51 +0000 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…[Read more]

]]> 79a81761ec0f83d6c64c210858e921a0 KeithHindmarch started the topic Neutropenia Sepsis. in the forum General http://www.myeloma.org.uk/forums/topic/neutropenia-sepsis Tue, 18 Dec 2012 16:30:45 +0000 Hello everyone
I'm typing this after just been discharged from Hospital. Last week I had a slight cough and on Friday morning my throat was on fire and I felt terrible. My temperature started to rise during the day and reached 39.1 and my heart rate was right off the scale. I went to bed thinking I could beat it off with Paracetamol and hot…[Read more]

]]> 53306cd32498d976786bb623e1802999 KeithHindmarch replied to the topic Bendamustine information in the forum Treatment http://www.myeloma.org.uk/forums/topic/bendamustine-information#post-101231 Thu, 13 Dec 2012 21:18:28 +0000 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…[Read more]

]]> aff37496f7f6c4704d728b488ca51956 KeithHindmarch replied to the topic Trials and maintenance therapies etc. in the forum Treatment http://www.myeloma.org.uk/forums/topic/trials-and-maintenance-therapies-etc#post-101170 Mon, 10 Dec 2012 14:34:21 +0000 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…[Read more]

]]> 271cfe2dd017213dc3eaa5ec7fc0ee2d KeithHindmarch replied to the topic Trials and maintenance therapies etc. in the forum Treatment http://www.myeloma.org.uk/forums/topic/trials-and-maintenance-therapies-etc#post-101165 Sun, 09 Dec 2012 18:46:01 +0000 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…[Read more]

]]> 30c632ce1ea4e28ce3a011f1b2edec17 KeithHindmarch replied to the topic Itchy Scalp/face/neck in the forum Side-effects http://www.myeloma.org.uk/forums/topic/itchy-scalpfaceneck#post-104267 Sun, 09 Dec 2012 01:17:21 +0000 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.

]]> 1dda79d2aee77507957a2ed4811e9786 KeithHindmarch replied to the topic Out with The Rev... in with Ben in the forum Treatment http://www.myeloma.org.uk/forums/topic/out-with-the-rev-in-with-ben#post-101113 Thu, 06 Dec 2012 21:38:51 +0000 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…[Read more]

]]> 6b245d46135df16976b9d1293db4593c KeithHindmarch started the topic Vemurafenib Clinical Trial. in the forum Treatment http://www.myeloma.org.uk/forums/topic/vemurafenib-clinical-trial Tue, 04 Dec 2012 18:28:13 +0000 Hi,

Has anyone else read about this on the MUK site. I see my Consultant on Thursday and I'm going to enquire about my own chances of getting onto it. After reading about it my chances are very slim but I do fit the criteria although I most likely don't carry the gene that would make me a candidate for the trial. Either way I'll have a…[Read more]

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