Myeloma Forum | AnnetteMorgan | Activity https://forum.myeloma.org.uk/members/avantromp/activity/ Activity feed for AnnetteMorgan. Tue, 14 Apr 2026 20:56:26 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 af4ffed4e240b06751ed887a60e05535 AnnetteMorgan replied to the topic Back again, in the forum General https://www.myeloma.org.uk/forums/topic/back-again/#post-135830 Tue, 07 Nov 2017 12:01:07 +0000 Hallo Richard
We seem to have reached the same point. I have lived in Holland for over 30 years. Revlimid has worked brilliantly for me, for over 7 years, but my m-proteins are now inexorably rising. My consultant stopped the Revlimid 2 months ago and on Thursday I am to hear the result of his consultation with colleagues. Stopping the Revlimid…[Read more]

]]> 421c3e9f8be6766eb8c62c43db7629a6 AnnetteMorgan replied to the topic SCT - Relapse - Revlimid/Dex in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-relapse-revlimiddex/#post-135304 Wed, 04 Oct 2017 09:16:18 +0100 Hallo Ian
I had better tell you more about my dose. I went onto a research study and under its protocol I first received 10mg. Revlimid. I couldn’t tolerate it. My upper body became covered in blotches and all skin peeled. I was like a walking snowstorm. My consultant then reduced the dose to 7.5mg. He also said that my initial response was a good…[Read more]

]]> 66c87dd6d1a5670a8a33b4487f03ae83 AnnetteMorgan replied to the topic SCT - Relapse - Revlimid/Dex in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-relapse-revlimiddex/#post-135296 Tue, 03 Oct 2017 10:11:33 +0100 Hallo Ian
Go into it with confidence. I was diagnosed almost 8 years ago aged 66 and was told that a sct was inappropriate for me. I went straight onto Revlimid 7.5mg. and in all that time I have been able to enjoy life to the full. I was never in recession but my m-protein remained around .5gr./L. The numbers are now very slowly starting to rise…[Read more]

]]> e9c28a1d697935a4cb0a442ed686fc81 AnnetteMorgan replied to the topic Revlimid dilemma in the forum General https://www.myeloma.org.uk/forums/topic/revlimid-dilemma/#post-133599 Sun, 28 May 2017 22:00:52 +0100 Hallo Sue
I have been taking Revlimid for over 7 years and the only significant side effect for me has been diarrhoea. I cope with this very well with loperamide and Questran as needed. My Revlimid dose is very low, only 7.5mg., 3 weeks on and 1 week off. I have not had an sct and never reached remission. The possibility of a secondary cancer was…[Read more]

]]> 0aeb488f556675264180a141c383335b AnnetteMorgan replied to the topic MGUS at 35 in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/mgus-at-35/#post-133540 Thu, 25 May 2017 09:23:56 +0100 Hello Steve
You might like to read this thread that I came across on Myeloma Beacon.
http://www.myelomabeacon.com/forum/risk-of-progression-with-mgus-new-czech-study-t8714.html
All the best to you. Try not to let the diagnosis get you down. Even if,one day, it does become MM, research is advancing at a prodigious rate.
Annette

]]> 3d8fc54d4100e25737741c3cd20a48c4 AnnetteMorgan replied to the topic Remission in the forum Newcomers https://www.myeloma.org.uk/forums/topic/remission-2/#post-132179 Wed, 08 Mar 2017 17:29:22 +0000 Hallo Lynne
I didn’t want to go into a long story about my history. (I don’t have a problem with talking about it but it takes up so much space.} I live in the Netherlands and when I was diagnosed I entered a trial (Hovon 87) aimed at testing the difference between thalidomide and lenalidomide (Revlimid) for newly diagnosed patients not eligible…[Read more]

]]> 33f6c8382cb52d4ca112575f2839d6bd AnnetteMorgan replied to the topic Remission in the forum Newcomers https://www.myeloma.org.uk/forums/topic/remission-2/#post-132144 Mon, 06 Mar 2017 22:59:43 +0000 Hallo Lynne
I was diagnosed over 7 years ago. I had no sct and was put onto Revlimid and never achieved remission. My MM markers are still very low and I have had no other treatment than Revlimid. Try to be positive about your prospects because, as Louis says, everyone responds differently to treatment.
Annette

]]> b283aa7b434d1380d1cc72e449e3b832 AnnetteMorgan replied to the topic Sct not an option in the forum General https://www.myeloma.org.uk/forums/topic/sct-not-an-option/#post-131624 Sat, 21 Jan 2017 20:54:47 +0000 Hallo Millie
I was diagnosed 1 Feb. 2010 and was put onto Revlimid (7.5mg.) that I have been taking since then.The first 3 years my m-protein (I think it is still called paraprotein in Britain) slowly went down until it reached a plateau of around .5gr/l. It then remained at this level until about 6 months ago when it started rising minimally,…[Read more]

]]> c45eb7eac910c28eabd9f65b6bccab36 AnnetteMorgan replied to the topic Accidental MM finding two months ago in the forum Newcomers https://www.myeloma.org.uk/forums/topic/accidental-mm-finding-two-months-ago/#post-129395 Sat, 10 Sep 2016 08:13:45 +0100 Hallo
I spotted this mail on a thread in Myeloma Beacon. “Re: Fever after Zometa infusion – is it serious?”
You might find it helpful.
Annette

Re: Fever after Zometa infusion – is it serious?
by chadsnow on Thu Sep 08, 2016 4:56 am

Too late to help the original poster, but anyone who reads this later may be helped by this advice. I had a…[Read more]

]]> 81f701e0058065866c8c9abdd0f47292 AnnetteMorgan replied to the topic SCT alternatives in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-alternatives/#post-129250 Sun, 21 Aug 2016 13:08:33 +0100 Hi Peter
Do you ever go to The Myeloma Beacon?
http://www.myelomabeacon.com/forum/
The site is linked to a cancer hospital in the U.S. They have a large pool of forum entries covering every imaginable aspect of MM and the mails are all sorted, making it easy to find what you want. You can request the newsletter and peruse the forum without having…[Read more]

]]> c5ee75c5d97b5e0b0069f7825938dd32 AnnetteMorgan replied to the topic SCT alternatives in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-alternatives/#post-129248 Sat, 20 Aug 2016 18:45:33 +0100 Hi Peter
I was told that I was too old at 66 to have an sct. I was so taken aback with the diagnosis that I didn’t pursue it. I know now that I could have pushed for it but am extremely pleased in retrospect that I didn’t have one. But that is the problem with MM. You never know how you will respond to a particular drug or treatment. A friend here…[Read more]

]]> 97fa81e6f48deb7ca2ee0f2368c30d8d AnnetteMorgan replied to the topic SCT alternatives in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-alternatives/#post-129247 Sat, 20 Aug 2016 17:31:24 +0100 Hi Brian
I shall be 73 tomorrow. In my mind I feel much younger. I go shopping on my bike and I play in a large accordion orchestra.
Revlimid capsules come in units of 5mg, 10mg, and 25mg, as far as I know. I started off with 10mg but had such an adverse reaction that I went to 7.5mg, that for me means alternate days of 2x5mg and 1x5mg. I have a…[Read more]

]]> 100a6b7ea991419184c7a50fa246bc76 AnnetteMorgan replied to the topic SCT alternatives in the forum Treatment https://www.myeloma.org.uk/forums/topic/sct-alternatives/#post-129244 Sat, 20 Aug 2016 14:36:13 +0100 Hallo Brian and Peter
My experience might contribute to your thinking on the subject.
I was diagnosed in Feb. 2010 and put onto Revlimid 7.5mg., 3 weeks on /1 week off. My dose has never changed and
my paraprotein has hovered for years around .5g/dl. I am at a loss to know why it has been so successful for me but long may it last!
Annette

]]> fc9ad5c8eb040e69750c192ad27dd191 AnnetteMorgan replied to the topic Loose bowels & occassional dizzy spells in the forum Side-effects http://www.myeloma.org.uk/forums/topic/loose-bowels-occassional-dizzy-spells/#post-125587 Wed, 06 Jan 2016 22:13:38 +0000 Hallo Eric
I have a tip that may help with too loose bowels. I have been taking Revlimid for 6 years and my only real problem was unpredictable diarrhoea. I frequently had to dash to the WC with the fear that I wouldn’t make it. I learnt from an MM blogger that Questran might help so I asked my consultant if he was willing to prescribe it for me.…[Read more]

]]> b6c70ea42082cd04d4b85907294a1b11 AnnetteMorgan replied to the topic Criteria for Remission in the forum Treatment http://www.myeloma.org.uk/forums/topic/criteria-for-remission/page/2/#post-125022 Wed, 18 Nov 2015 13:23:23 +0000 Hallo Peter
I was diagnosed in Feb.2010 and at the age of 66 was not considered eligible for sct. I see my arithmetic was a bit off and I have been treated for mm for almost 6 years. I went onto a trial (Hovon 87, in the Netherlands) so that is why I received lenalidomide straight after diagnosis. This is the only medication I have received (apart…[Read more]

]]> 7dcc9090627d1d3067e5c9b2d801ef75 AnnetteMorgan replied to the topic Criteria for Remission in the forum Treatment http://www.myeloma.org.uk/forums/topic/criteria-for-remission/page/2/#post-124896 Tue, 10 Nov 2015 09:11:24 +0000 Hallo Jeffery
My experience might help you to come to a decision. I was put on lenalidomide nearly 7 years ago when it was used as a single agent, not combined with Dex. No sct for me because I was seen as too old at 66. Although mm is detectable via pp in my blood I have been stable for years and my pp has never been lower, at present .5gr/ltr. I…[Read more]

]]> dab5ddb2eda3fc227d5c8ab215d08942 AnnetteMorgan replied to the topic Removal of Revlimid and pomalidomide from Cancer Drugs Fund in the forum General http://www.myeloma.org.uk/forums/topic/removal-of-revlimid-and-pomalidomide-from-cancer-drugs-fund/page/2/#post-123956 Sun, 06 Sep 2015 12:39:02 +0100 Hi all
I live and am being treated in the Netherlands. It has just been reported here that Celgene, manufacturer of Pomalidomide (and Revlimid), has reached an agreement with Dutch haematologists and 6 major health insurers to provide Pomalidomide on the basis of no-benefit-no-cost. Maybe this is something to campaign for. Revlimid, that I…[Read more]

]]> 5eaa9bc83fc1681c8bad1d21fda820c5 AnnetteMorgan replied to the topic Zometa and dentistry in the forum General http://www.myeloma.org.uk/forums/topic/zometa-and-dentistry/#post-123893 Fri, 04 Sep 2015 12:47:13 +0100 Hallo Frances
When I was first diagnosed with mm my consultant gave me a paper with guidelines for my dentist. A couple of years ago I had an infection in my jaw and took the precaution of going off the bisphosphonate for three months before the dental treatment. Before you go for treatment I would check that your dentist is aware of the risk of…[Read more]

]]> 2aac86968f2f6a94ec5768d633a1dbc8 AnnetteMorgan replied to the topic Pessimistic Consultant ? in the forum Treatment http://www.myeloma.org.uk/forums/topic/pessimistic-consultant/#post-123676 Thu, 20 Aug 2015 13:26:02 +0100 Hallo Peter
Unbelievable! I would say completely ignore him and put your faith in a haematologist. Everybody responds differently to treatment and also there is a great deal of effective research being carried out. At the age of 66 I was told I was too old for a sct, now over 5 years later, on revlimid maintenance, I have barely detectable myeloma…[Read more]

]]> 8c2b16f56bafcb55c3da262467db4fe4 AnnetteMorgan replied to the topic I'm so happy! in the forum Off topic http://www.myeloma.org.uk/forums/topic/im-so-happy/#post-122783 Fri, 26 Jun 2015 10:49:44 +0100 Congratulations Richard
It’s tough learning another language in middle age, especially when you have probably only superficially learned French at school. We came to the Netherlands over 30 years ago and I didn’t have too much of a problem because I already spoke fluent German and regularly met mothers and their children outside the school gates.…[Read more]

]]> 133fbd432d7addb06790817bb7990a6c AnnetteMorgan replied to the topic Pain I can't get rid of in the forum Smouldering myeloma / MGUS http://www.myeloma.org.uk/forums/topic/pain-i-cant-get-rid-of/#post-122671 Tue, 16 Jun 2015 10:50:03 +0100 Hallo fm 1960
This morning I read an article in our newspaper and it describes exactly what you are suffering. There is no point in copying it for you because it is in Dutch. Briefly it says:
Year-long suffering from agonising pain in the abdomen, unnecessary operations and investigations, and finally being told it is “between the ears”. This…[Read more]

]]> 643b96d6fe9e6a287f355c6f2f20af50 AnnetteMorgan replied to the topic Dry and Brittle Fingernails in the forum General http://www.myeloma.org.uk/forums/topic/dry-and-brittle-fingernails/#post-122213 Wed, 20 May 2015 15:18:05 +0100 Hallo All
During the months before my diagnosis my finger nails started turning up at the sides. I asked my GP about it at the time and, after the diagnosis, the consultant. They both said there was no apparent cause but I feel it must have been connected in some way to MM because my nails are now a normal shape. They grow very fast but always…[Read more]

]]> 5f55f39a474796d7516d689f77f2f20d AnnetteMorgan replied to the topic Dry and Brittle Fingernails in the forum General http://www.myeloma.org.uk/forums/topic/dry-and-brittle-fingernails/#post-122147 Fri, 15 May 2015 21:19:56 +0100 Hallo Janet
Your description matches my experience exactly. My only solution is to keep my nails very short. Are we on the same medication – Revlimid? No problems with my teeth.
Annette

]]> 19fd805f1e606345a4840bc5736a4c44 AnnetteMorgan replied to the topic Possible transplant in the forum Treatment http://www.myeloma.org.uk/forums/topic/possible-transplant/#post-121922 Mon, 27 Apr 2015 11:28:15 +0100 Hallo John
I just want to give you a different perspective. I was diagnosed at the beginning of 2010 at age 66. I was told I was too old for a sct and was so overwhelmed by everything that I accepted this. In retrospect I could probably have made a good case for a sct and almost certainly would have succeeded in getting one since I was otherwise…[Read more]

]]> 5a32726539d6a35284d8b70f548ad6dd AnnetteMorgan replied to the topic Revlimid experiences in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlimid-experiences/#post-120922 Sun, 22 Feb 2015 11:43:13 +0000 Hallo Tom
I suggest you take a look at this site on Myeloma Forum. There is a large collection of personal experiences relating to Revlimid.

http://www.myelomabeacon.com/forum/search.php?keywords=Revlimid+lenalidomide&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

I have been taking Revlimid (7.5mg) for…[Read more]

]]> 4652d662f13b42bb414b02ad57d5693b AnnetteMorgan replied to the topic Shingles in the forum General http://www.myeloma.org.uk/forums/topic/shingles-3/#post-120693 Sun, 08 Feb 2015 12:49:17 +0000 Hallo Ron
Get your wife to the GP as soon as possible to get anti-viral treatment. This can help to reduce the effects of shingles if taken soon enough. I got shingles 2 years ago and still feel the nerve damage on my back. My consultant has given me an undated prescription for anti-viral pills so that I can react straight away if I suspect it.…[Read more]

]]> 6522c08976b507ab8468c44a1fbe06b2 AnnetteMorgan replied to the topic Rash with Revlimid in the forum Side-effects http://www.myeloma.org.uk/forums/topic/rash-with-revlimid/#post-120298 Thu, 15 Jan 2015 14:59:55 +0000 Hallo Dave
I started taking Revlimid 5 years ago when diagnosed with mm.(I shan’t go into the why’s etc. here.) My consultant started me on 10 mg. but I almost immediately got the same reaction as Beverley’s husband. The dose was then reduced to 7.5mg. My consultant said that he found this a good sign – I was obviously responding well to the…[Read more]

]]> 83d52cddd519e39ce69b7c60415c10e9 AnnetteMorgan replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/4/#post-119929 Wed, 10 Dec 2014 19:35:33 +0000 Hallo Susie
I have been taking Revlimid for almost 5 years and the persistent side effect has been diarrhoea and intestinal cramps. My solution (at the suggestion of the consultant) is to take Loperamide when necessary. For me (in the Netherlands) it is available over the counter. It works like magic.
Annette

]]> 58c128c20b4b07bef66b2ee1a6fa5d9a AnnetteMorgan replied to the topic bone marrow biopsy in the forum General http://www.myeloma.org.uk/forums/topic/bone-marrow-biopsy-2/page/2/#post-119928 Wed, 10 Dec 2014 19:28:24 +0000 I just want to add my experience of BNBs. Either I am very lucky with my consultant who has done it each time or else I am fortunate to have a high pain threshold but I barely feel any effects.It is a bit uncomfortable when the bone is reached but then plaster on it and forget all about it. It goes to show that everybody experiences it…[Read more]

]]> 8d25c894ab62cba3c35ad39ad03ab62a AnnetteMorgan replied to the topic Dexamethadone v Prednisalone in the forum General http://www.myeloma.org.uk/forums/topic/dexamethadone-v-prednisalone/#post-119410 Tue, 11 Nov 2014 09:15:20 +0000 Hello again Peter
Just a quick response to Dusk’s mail. Lenalidomide in itself has not been shown to induce secondary cancers more than any other treatment except when it was taken initially in combination with certain other drugs. Look up on internet Myeloma Beacon, “Revlimid and Secondary Cancers”. Below is a quote from the article.

“Revlimid…[Read more]

]]> f0d5c1f1507e062dbf16ac25d73f6a54 AnnetteMorgan replied to the topic Dexamethadone v Prednisalone in the forum General http://www.myeloma.org.uk/forums/topic/dexamethadone-v-prednisalone/#post-119389 Mon, 10 Nov 2014 09:20:46 +0000 Hallo Peter
I believe that one reason why dexamethasone is prescribed rather than prednison is that there is a greater chance of a secondary cancer when prednison is taken in combination with lenalidomide. I was advised by my consultant to be alert for skin cancer.
Annette

]]> 24ba9355ea568a6ad1722bf13766d698 AnnetteMorgan replied to the topic Calcium levels in the forum General http://www.myeloma.org.uk/forums/topic/calcium-levels/#post-118594 Sun, 05 Oct 2014 13:20:20 +0100 Hallo Jeffery
I’m also off topic but I want give a warning about drinking a lot of tea. My creatinine level shot up during the hot weather so much that my consultant did a bone marrow test.He told me that tea works as a diuretic. I must still drink at least 1.5 litre water, however much tea I drink. Creatinine levels promptly reduced.
Annette

]]> 61908285a73909d0529334eeb550e922 AnnetteMorgan replied to the topic Problems gaining access to hospital test results in the forum General http://www.myeloma.org.uk/forums/topic/problems-gaining-access-to-hospital-test-results/#post-116937 Tue, 22 Jul 2014 07:59:30 +0100 Hallo Everyone
Thought I would let you know how I get my blood results. At the last appointment I am given the blood test form with required tests ticked off. On the day of my appointment I go to the hospital an hour earlier for blood to be taken and am seen straightaway because my form has an “urgency” indication. When I then see the consultant…[Read more]

]]> 1146d50e5140ab95cd8d000a82745d5b AnnetteMorgan replied to the topic Problems gaining access to hospital test results in the forum General http://www.myeloma.org.uk/forums/topic/problems-gaining-access-to-hospital-test-results/#post-116909 Sun, 20 Jul 2014 11:09:39 +0100 Hallo to JanT, Frances, CarolSymons, Dusk and Graham-C
I find your descriptions of trying to get access to results outrageous. I am being treated in Holland and get a printout of every blood test. When I see my consultant he turns his computer screen to show me his graphs of my progress etc. and takes time to answer any questions I may have. The…[Read more]

]]> ab234941ac40bf8631cf922d21bab212 AnnetteMorgan replied to the topic Rattling through a bit too fast in the forum General http://www.myeloma.org.uk/forums/topic/rattling-through-a-bit-too-fast/page/2/#post-116903 Sat, 19 Jul 2014 21:25:16 +0100 Hallo David
I live in the Netherlands. When I was diagnosed in 2010 I had the option of standard treatment at the time i.e. thalidomide + chemo for 9 months and then continuing thalidomide, or else I could participate in a random trial comparing thalidomide and lenalidomide (Revlimid).I was fortunate and got lenalidomide. I was 66 at the time and…[Read more]

]]> 894733a15be0c9123a20de934bc4ebef AnnetteMorgan replied to the topic Rattling through a bit too fast in the forum General http://www.myeloma.org.uk/forums/topic/rattling-through-a-bit-too-fast/#post-116567 Fri, 11 Jul 2014 14:14:23 +0100 Hallo Fiona
Just to give you my experience so far. I have been on Revlimid for 4.5 years and no sign yet of new MM activity. I wonder how long this can last. At any rate this is my first treatment so hopefully I shall have others to fall back on. Decisions, decisions !!!. Good luck.
Annette

]]> 45ab1f405916d3e9c45fa713a8810cd3 AnnetteMorgan replied to the topic Scared, Confused, and Hating the Irony in the forum Newcomers http://www.myeloma.org.uk/forums/topic/scared-confused-and-hating-the-irony/#post-116284 Fri, 27 Jun 2014 09:43:52 +0100 Hallo Treakle
I would like to offer a couple of tips. Encourage your father to attend appointments with a friend or relative. There is always so much information to take in and it is difficult to remember everything. The other is, he should try to always get a printout of his blood results if he can. I find this empowering as I then have a basis…[Read more]

]]> 9c48ef7b55696e3434982168d61a9a09 AnnetteMorgan replied to the topic cramps in fingers in the forum Side-effects http://www.myeloma.org.uk/forums/topic/cramps-in-fingers/#post-115119 Wed, 14 May 2014 11:45:53 +0100 Hallo Ian
I get intermittent cramp in my fingers and toes, caused I think by Revlimid, but not really a problem. However when visiting Myeloma Beacon I spotted a blog section, with many entries, devoted to cramp. Perhaps you can find some useful help there. It can be very unpleasant so good luck.
Annette

]]> 614b3d85bea8f40de95cccc7b96467bb AnnetteMorgan replied to the topic Shingles in the forum General http://www.myeloma.org.uk/forums/topic/shingles-2/page/2/#post-113386 Sat, 01 Mar 2014 18:24:58 +0000 Hello Jean
I thought I would just give my bit.I caught shingles 2 years ago and still have nagging pain on my back. I have been taking Revlimid for 4 years with no neuropathy but have recently been getting cramp in my toes.I decided to be proactive and (with the permission of my consultant) started taking B12. All my shingles symptoms came back…[Read more]

]]> 643b97e34dc126470e3dc49002479576 AnnetteMorgan replied to the topic to SCT or Not to SCT in the forum General http://www.myeloma.org.uk/forums/topic/to-sct-or-not-to-sct#post-95157 Tue, 30 Apr 2013 10:44:31 +0100 Hallo Clare
I was diagnosed with MM in March 2010 but SCT was not considered appropriate because I was 66 (I live in Holland and the age limit is 65). At first I was concerned about this but now I am glad that things worked out this way. I was given Revlimid. At the end of the chemo (good partial response) the revlimid continued and since then my…[Read more]

]]> 4c3f04cbf1097e919aee8e97aa1c4b59 AnnetteMorgan replied to the topic Three monthly check-up in the forum General http://www.myeloma.org.uk/forums/topic/three-monthly-checkup#post-94688 Tue, 26 Mar 2013 11:37:41 +0000 Hello Val
Glad to hear your good news. Have you thought of taking magnesium against cramp? A friend with MM found that it really helped.
Annette

]]> 8d8f93f3e61bc9c9ca4bb10a0815d47d AnnetteMorgan replied to the topic Revlimid Question in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlimid-question#post-102001 Mon, 04 Mar 2013 12:53:56 +0000 Hello Jill
I have been on Revlimid for 3 years ( a low dose of 7.5 ). The only significant side effect for me has been diarrhea, unpredictable and a great nuisance. My specialist suggested I could try over-the-counter diarrhea suppressant containing loperamidehydrochloride. This really works for me. I take it seldom but it is good to know it is…[Read more]

]]> 5b14a5a3b8b6aa7c6529ee8eede22221 AnnetteMorgan replied to the topic New with a tale to tell already! in the forum Newcomers http://www.myeloma.org.uk/forums/topic/new-with-a-tale-to-tell-already#post-86911 Sun, 11 Nov 2012 15:27:38 +0000 Hallo Lizzy
My experience might help you. Since diagnosis in March 2010 I have taking part in a study comparing results between the use of thalidomide and lenalidomide (Revlimid). I was given lenalidomide 10mg. and the effect on me was similar to that described by you. I had to smother myself in creams and lotions. I was like a walking snowstorm…[Read more]

]]> 2dbf0523c2577371bb704accfee133bc AnnetteMorgan replied to the topic Velcade Experiences in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-experiences#post-104492 Mon, 28 May 2012 21:03:27 +0100 Hallo Deborah
I am a complete layman so don't take what I say as gospel. I have heard that a vaccination is available but it is made from a weakened live virus and is therefore not suitable for anyone with reduced resistance.
I can't say what is customary in Britain as I have been living in the Netherlands for over 30 years. My treatment here is…[Read more]

]]> 81ecbe523d15d5ce7c9547d39c0cef08 AnnetteMorgan replied to the topic Velcade Experiences in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-experiences#post-104490 Mon, 28 May 2012 16:23:26 +0100 Hallo Deborah
You enquired about Velcade? About a month ago I attended the National Myeloma day in the Netherlands. Dr.Lokhorst gave a lecture on problems related to MM medication. He said that there is 50% chance of getting shingles if you take Velcade and he always prescribes zelitrex for protection. Believe me, you do not want to get shingles…[Read more]

]]> 035bd92ff09db398b0e9cbcaeaedc628 AnnetteMorgan replied to the topic Maintenance Treatment in the forum Newcomers http://www.myeloma.org.uk/forums/topic/maintenance-treatment#post-85498 Sat, 04 Feb 2012 23:03:23 +0000 Hello James
I am receiving maintenance treatment and have been taking lenalidomide (trade name Revlamid) for two years. I have no neuropathy whatever and at the hospital they say that this is one of the advantages of lenalidomide. I am taking part in a trial and was randomised for lenalidomide and the other group received thalidomide. However…[Read more]

]]> b78fa1cfad5d4a6d8355bdafcdd24c2d AnnetteMorgan replied to the topic Revlimid and fluey aches in the forum Side-effects http://www.myeloma.org.uk/forums/topic/revlimid-and-fluey-aches#post-104343 Thu, 01 Dec 2011 15:59:55 +0000 Hello Debs
I have now been taking Revlimid for almost 2 years but have not suffered any symptoms such as described by you. However you all (who have replied) seem to be taking such a high dose. I take 7.5mg and my paraprotein is still slowly going down. I wonder why there is such a difference in dose.
Annette

]]> 9a6cd4fefa3fcc88dda9b953d8258bcf AnnetteMorgan replied to the topic Peripheral Neuropathy in the forum Side-effects http://www.myeloma.org.uk/forums/topic/peripheral-neuropathy#post-104310 Sun, 20 Nov 2011 11:29:52 +0000 Hallo all
I just want to chip in with something I heard last week when attending a regional meeting of MM sufferers (in the Netherlands). When talking about the problems of peripheral neuropathy one person said that for her it had been substantially reduced by taking Lyrica. She has now stopped taking Lyrica And the neuropathy has not returned.…[Read more]

]]> 80e254721d2c40bb659d2f8be14dac02 AnnetteMorgan replied to the topic Revlamid in the forum Treatment http://www.myeloma.org.uk/forums/topic/revlamid/page/3/#post-97606 Sun, 21 Aug 2011 12:38:32 +0100 Hallo everyone
I find it helpful to read everyone's experiences, so I decided to add my bit. My name is Annette and I am British but have lived in Holland for over 30 years. I was diagnosed with MM in Feb.2010 when I was 66. My paraprotein level was way up, I think in the 70's. I was put onto 10mg. Lenalidomide (Revlimid) a day, almost…[Read more]

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