Myeloma Forum | MarshallSue | Friends Activity https://forum.myeloma.org.uk/members/SueM/activity/friends/ Activity feed for MarshallSue's friends. Sat, 11 Apr 2026 13:30:20 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 2a7ac1c93648a28b2e5762c545d75de9 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/3/#post-137162 Mon, 19 Feb 2018 00:38:17 +0000 Hello Mavis
I wasn’t given thalidomide at the beginning as I went onto the myeloma 11 trial and was randomised to have revlimid – so thalidomide is new for me and is working very well – I’m now on my 9th cycle of it and my numbers are still going down. I’m hoping for a very long time on it! Though as you say – the thinning hair and perip…[Read more]

]]> 82246f2beee14395740909d2f59740f9 HelenWatkinson replied to the topic 7 Years ago Today in the forum General https://www.myeloma.org.uk/forums/topic/7-years-ago-today/#post-137161 Mon, 19 Feb 2018 00:21:07 +0000 Hi Phil
Congratulations on 7 years – I too reached that milestone on 3rd February- it’s not all plain sailing but all the new drugs coming along make me feel very positive for us all.
Take care of yourself
Love Helen

]]> 813654e660c1c0d64e65e02b1a5f39a5 HelenWatkinson replied to the topic Daratumumab in the forum Treatment https://www.myeloma.org.uk/forums/topic/daratumumab-2/#post-137160 Mon, 19 Feb 2018 00:15:19 +0000 Hi Michael
I’m really glad you are doing ok with Daratumumab, sadly I had to come off it after 3 months as my disease went wild and I’m now on thalidomide- which fortunately is working.
You are right to put your experience of it on here, it can be very helpful to know others have been there too.
Love Helen

]]> 8380f18a068a9bb1423abf451bacd390 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/3/#post-136604 Wed, 10 Jan 2018 00:58:13 +0000 Happy new year to you all, I’ve just been away for a few cold days in the Scottish Borders- very nice but too much eating and drinking!!
Maureen I hope Christmas for you and your family wasn’t too difficult- I can’t imagine what it is like to be alone for these occasions after so many years together. I’ve been thinking about you lots
Ma…[Read more]

]]> bc4db48096f1377eb864fb42db49a283 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/3/#post-136527 Mon, 25 Dec 2017 02:25:07 +0000 Hi Andy and Mavis
I hope you are both well at the minute – I’m not too bad – recovering from a chest infection again but other than that the CTD has now dropped my light chains down to 229 from 1265; all good.
I managed a trip to Crete in November – marvellous- weather was superb and there were no crowds, like you Andy, I had immunoglobulin b…[Read more]

]]> 88a3d96b2c66722ddd8564a09208b79d HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/3/#post-134001 Tue, 27 Jun 2017 10:49:46 +0100 Hi Maureen
I’m saddened that your consultant is so negative- what’s wrong with trying to eke as much of out of life as possible- he should at least be offering the littlest rays of hope. I suppose he’s being pragmatic in that when the myeloma is aggressive it’s realistic to say that the drugs do not work as well or for as long so life is now more…[Read more]

]]> b12efcc370d4fd9fcac3cf1c294b7ccc HelenWatkinson replied to the topic Anyone with P 53 Gene deletion ? in the forum Newcomers https://www.myeloma.org.uk/forums/topic/anyone-with-p-53-gene-deletion/#post-133999 Tue, 27 Jun 2017 10:36:56 +0100 Hi Pam
It’s nice to be hospital free for a bit – I went to France for a few days before my sct.
I’ve usually felt and looked the picture of health since I started down this road – and though I’ve had some terrifying infections I’ve recovered very well- if not quickly- it’s vital to keep checking your temperature.
I’d go for a donor transplant…[Read more]

]]> 34d2af4630f841aae4618a2f072ec053 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/2/#post-133866 Thu, 15 Jun 2017 08:26:16 +0100 Hi again Maureen- this is the American site so I don’t know if the drug company are able or likely to request extensions of trials outside the US – anyway asking doesn’t harm- after all ‘shy bairns get nowt’ as we say round here
Love Helen

]]> 66b1ac62f350c339988700385efae459 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/2/#post-133865 Thu, 15 Jun 2017 08:17:52 +0100 Hi Maureen
Hope you and Ian are ok- I’ve just been looking at the clinical trials web site (clinical trials.gov) and it seems to suggest that the early access Daratumumab trial has been extended- it might be worth investigating to see if that is really the case and if Ian is eligible to go in it.
Love Helen

]]> 89e4e0aca18669ff15cfe561d51d3dec HelenWatkinson replied to the topic What now? in the forum Newcomers https://www.myeloma.org.uk/forums/topic/what-now/#post-133781 Tue, 13 Jun 2017 09:23:02 +0100 Hi Gerry
Has anyone suggested Pomalidomide? It’s available now? As for trials a distance away- several people I’ve met recently travel 2-3 hours to be in the trial I’m in and others- they don’t seem unduly concerned about it though they do find very tiring
Love Helen

]]> a3125a71610d556db71b83656db444f0 HelenWatkinson replied to the topic Anyone with P 53 Gene deletion ? in the forum Newcomers https://www.myeloma.org.uk/forums/topic/anyone-with-p-53-gene-deletion/#post-133780 Tue, 13 Jun 2017 09:16:40 +0100 Hi Pam
I have the P53 deletion- as I understand things it means that it’s more difficult to treat and get drug free remissions. I’ve been on almost continuous treatment since diagnosis as a result.
I had a stem cell transplant nearly 6 years ago and was on maintenance revlimid afterwards- most recently I’ve finished pomalidomide after 32…[Read more]

]]> 9f0743c7666390dc9ff54fcf95aeefa5 HelenWatkinson started the topic Daratumumab in the forum Treatment https://www.myeloma.org.uk/forums/topic/daratumumab-2/ Tue, 13 Jun 2017 08:55:02 +0100 Hi all
I don’t know how many of you out there are on Daratumumab but I’d like to know what I should be feeling like- do I do as much as I can or should I just do what I feel up to and not push myself?
And – side effects- I’m getting them 4 days after the infusion- all the named ones but horrible
Love helen

]]> 9d8ec52d6400e5a5ce21a284f2fd14e1 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/2/#post-133778 Tue, 13 Jun 2017 08:46:03 +0100 Hi Andy
Kefalonia eh- we still haven’t been to Greece together! I’ve been a few times but Tim isn’t very keen on hot places (redhead!) I think we might look at Italy again later in the year.
I think I’m finding the Daratumumab a bit more difficult- apparently there are very few side effects but I’m getting a few several days afterward- headache,…[Read more]

]]> 97ac1086fc18dc855070fa2180d0a6d9 HelenWatkinson replied to the topic Revlimid dilemma in the forum General https://www.myeloma.org.uk/forums/topic/revlimid-dilemma/#post-133651 Thu, 01 Jun 2017 10:32:21 +0100 Hi Sue
I was in complete remission- no mm cells on BMT and zero light chains – this lasted about 6 months then they started to come up above normal again- took a full year after this before I started treatment again.
I too agonised over the decision but I was glad I took it.
One of my friends has been on it now for 5 years and is doing really…[Read more]

]]> e71d7ef1f9a5db947fd9760d4a6892a7 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/2/#post-133648 Thu, 01 Jun 2017 09:30:24 +0100 Hi Maureen
Hope Ian is still going strong
And Andy – how are you getting on? I keep reading (and enjoying) your tweets ( I’ve forgotten how to do it)
I’m ok with the Daratumumab but the light chains remain around 450 – I’m staying with the trial as stable numbers might be the best I get from it, just got to see what happens. I’m on the…[Read more]

]]> d620b335f5ae85220eec3f057c9c350d HelenWatkinson replied to the topic Revlimid dilemma in the forum General https://www.myeloma.org.uk/forums/topic/revlimid-dilemma/#post-133647 Thu, 01 Jun 2017 09:13:59 +0100 Hi Sue
I was on the same trial back in 2011 and after transplant I was randomised to Revlimid which I took for 15 months until I relapsed. I’ve been on the various other anti myeloma drugs continuously ever since having had no remission at all.
I too had the diarrhoea problems and tiredness as side effects but all very manageable- I went to New…[Read more]

]]> ab7feab9dce80e6814effc38f1355771 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/2/#post-133330 Tue, 09 May 2017 10:57:05 +0100 Hi Sabs – I was never on Carfilzomib, there weren’t any trials available when I needed one! Then it was refused funding- the regular story! Hope your partner gets on ok with the trial.

Hi Jan
I’m sorry to hear you are bogged down with a cold- I’ve been on GCSF and immunoglobulins for the last few months since my second bout of sepsis last year -…[Read more]

]]> 543d163ec4216e6dd994ed7a57f5745c Helen changed their profile picture https://forum.myeloma.org.uk/activity/p/49530/ Tue, 02 May 2017 16:20:29 +0100 0 6f34f58ebe276a9202f327020764f715 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/2/#post-133259 Tue, 02 May 2017 16:11:33 +0100 Hi Jan
– your dad sounds like my mum – she’s fitter than me!! At 90 she’s a bit forgetful and arthritic but she can really get a move on when the painkillers are working!
I’m sitting here right now having infusion 2 of cycle 2, no ill effects but it takes all day to get it given! It’s taking longer today as it’s after a bank holiday- why they…[Read more]

]]> 60210157f120901078da6b69833050f3 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/2/#post-133135 Fri, 21 Apr 2017 21:36:20 +0100 Well, hello everybody- I’m now 4 weeks into the Daratumumab study – bit of a reaction at the first infusion so it was given very very slowly and I had to stay overnight- second infusion wasn’t so bad and only took about 8 hours- last 2 have been on target at around 5 hours – it’s still a whole day in the hospital though – every week for 8 weeks,…[Read more]

]]> 119e20918ac2cd23967211e6b8d8e455 HelenWatkinson replied to the topic fruit and veg after stem cell transplant in the forum General https://www.myeloma.org.uk/forums/topic/fruit-and-veg-after-stem-cell-transplant/#post-133133 Fri, 21 Apr 2017 18:14:34 +0100 Hi
Any thing well washed and cooked thoroughly should be ok and yes avoid prepackaged
Helen

]]> 9c8633bc121abfafcfd1ebf0f0d66bc0 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/#post-132669 Thu, 23 Mar 2017 22:56:39 +0000 Hi Maureen and Andy
I’m just finishing cycle 31 of the Pomalidomide and start the Daratumumab next Tuesday- just hope it works – fingers and toes all crossed!!
Hope Ian does well on his next regimen and Andy – the same applies to you too.
Our trip to Amsterdam was very nice though it rained a lot, the next jaunt is to Keswick at the end of April…[Read more]

]]> ee6754395c66e38253ec2d383bc0290c HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/#post-132669 Thu, 23 Mar 2017 22:56:39 +0000 Hi Maureen and Andy
I’m just finishing cycle 31 of the and

]]> d6a6fe5e1ae0489b0283aaa7cd1e27dd Helen posted a new activity comment https://forum.myeloma.org.uk/activity/p/48844/#acomment-49113 Thu, 23 Mar 2017 22:48:03 +0000 Hi Stephen – I’m a sflc myeloma so don’t have a protein level to work from but the light chains dropped very quickly over the first 3 months I was on Pomalidomide- they stayed around the same level for about a year and then have been slowly going up- My neutrophils were never very good but the rest of my blood counts were relatively stable. I hope…[Read more]

In reply to - Helen changed their profile picture ]]> 182c18c39d94d5da5bf3b1796d563611 Helen changed their profile picture https://forum.myeloma.org.uk/activity/p/48844/ Wed, 08 Mar 2017 01:16:00 +0000 2 1b3b95d76a1dffef4a467d85281e98b2 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/#post-132165 Wed, 08 Mar 2017 01:04:01 +0000 Hi Maureen
I’m sorry to hear what you say about Ian’s treatment options- it’s not easy to deal with- when you know that the drugs are out there – NICE have said no to Carfilzomib too and Daratumumab isn’t through yet either. Have they suggested Bendamustine for Ian? It’s my next one if things don’t pan out with the Daratumumab trial.
I was lucky…[Read more]

]]> 4d4d86493eeed7b88fff3053b079f326 HelenWatkinson replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/#post-131848 Mon, 13 Feb 2017 01:47:42 +0000 Hi Rebecca Ann Andy and Jan
Hope this post finds you all in a tolerable state -and thank you for your supportive replies to which I am only getting round to replying! Very rude of me.
I’m still living in a furniture store but it is gradually getting sorted and a lot of stuff is heading for the auction room!

I’m on cycle 30 of the Pomalidomide…[Read more]

]]> f559632cdc1873bed3ebb7051948ede3 HelenWatkinson started the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/ Wed, 09 Nov 2016 11:01:36 +0000 Dear all
I thought I’d better sign in after a very long gap- lots of reasons starting with an iPad problem logging in to the site and getting posts to ‘stick’
Any way – we have moved house – downsized- and living in a furniture store at the minute while we decide what to keep and what must go!
The holiday cottage has finally been finished for the…[Read more]

]]> f77c4404423453fb4b469ae6b10268f1 HelenWatkinson replied to the topic One year on in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/one-year-on/page/3/#post-126860 Wed, 10 Feb 2016 01:52:20 +0000 Dear Eve
How are you getting on? How was Christmas? Are you home yet and hows the old dog getting on? I think you are so very adventurous and I love that you just got up and went on your trip, turning dream to reality, keep going girl.
Let us know how you are doing
Much love Helen

]]> 12776b5a3596ad6700767e3901cc4a5c HelenWatkinson replied to the topic The 5th anniversary in the forum General http://www.myeloma.org.uk/forums/topic/the-5th-anniversary/#post-126859 Wed, 10 Feb 2016 01:43:32 +0000 Hi there Ali, Jan, Ann, Denise, Rebecca and Melanie and many thanks to you all for your kind replies. It’s nice to know you are out there.
I’ve found this milestone a funny one as it suddenly seems quite a long time now since this journey began and I feel relatively good. I’m not as angry about the situation at last… That’s something that has…[Read more]

]]> 2b3b55b9c3834f08b036145aabff6644 HelenWatkinson started the topic The 5th anniversary in the forum General http://www.myeloma.org.uk/forums/topic/the-5th-anniversary/ Wed, 03 Feb 2016 23:41:16 +0000 Well, this is a milestone day. My diagnosis and it’s attendant shock and horror was 5 years ago today, and I’m relieved to still be here and in relatively reasonable state of health, despite the nasty numb feet, disrupted gut and lost sense of taste and smell!
I’m going to take the opportunity to say thank you to all the nice people contributing…[Read more]

]]> 055c448431c5903e7488c57dd53131a7 HelenWatkinson replied to the topic 4th Anniversary - where to next? in the forum General http://www.myeloma.org.uk/forums/topic/4th-anniversary-where-to-next/page/5/#post-126801 Wed, 03 Feb 2016 23:33:08 +0000 Hi Jan
I waited for 4 weeks after finishing chemo for stem cell collection then 4 weeks after that for transplant, but I’ve only had the one transplant and I think it’s unlikely that I’ll have another as my cytogenetic problem is one where auto transplant is least effective, but who knows what might happen if I run out of other options.
You look…[Read more]

]]> 9f71794a023dc1fde44970097ed396d1 HelenWatkinson replied to the topic 4th Anniversary - where to next? in the forum General http://www.myeloma.org.uk/forums/topic/4th-anniversary-where-to-next/page/5/#post-126783 Mon, 01 Feb 2016 00:58:33 +0000 Hi Jan
I’m not too good at responding these days! Out of signal predominantly.
Glad to hear the velcade is working- I had to have the reduced dose as it affected my legs quite badly but it did give me a few tolerable months.
When do you anticipate having the next transplant? And I think I’d better do as Mavis asks and start a new post, this one…[Read more]

]]> 8e8b3941a4c3e843d9c0947c7bcd6aa2 HelenWatkinson replied to the topic 4th Anniversary - where to next? in the forum General http://www.myeloma.org.uk/forums/topic/4th-anniversary-where-to-next/page/4/#post-125407 Wed, 16 Dec 2015 01:38:09 +0000 Hi Jan
How is the velcade going now? Got the sickness under control yet? It’s not nice trying to balance all the side effects.. I think I feel worse trying to deal with the vagaries of the constipation caused by this and the runs caused by that- so that sometimes I just stay at home because I can’t plan a route that includes enough toilets!!!
I…[Read more]

]]> b522dc62c2278ca7ee41d4955b8a5fb3 HelenWatkinson replied to the topic One year on in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/one-year-on/page/2/#post-125290 Fri, 04 Dec 2015 01:00:16 +0000 Dear Eve
Ha ha ha – do you have the pattern for this!!! I wonder what people would say – it’s almost worth it for the laugh, my husband could have worn them last week in freezing Austria. Are you back in the uk for Christmas or still away. Any newzealanders visitors? None of ours are making the trip this year, too many babies and no money, but…[Read more]

]]> 6c39323c290cdb29288ce4c8c1709155 Helen changed their profile picture https://forum.myeloma.org.uk/activity/p/42097/ Thu, 03 Dec 2015 00:59:25 +0000 0 fd725c114fd209f2aba4201c02327235 HelenWatkinson replied to the topic A short post. in the forum General http://www.myeloma.org.uk/forums/topic/a-short-post/#post-125281 Thu, 03 Dec 2015 00:54:11 +0000 Hi Andy
I’m back from Austria – very nice, beautiful, clean pretty chocolate boxy villages and gorgeous Salzburg, did some walks in the snow and the Christmas markets. Quite festive, but very cold -7 at night and -4 during the day.
Good to see you recovering well, got all your Christmas shopping done yet? I haven’t – clueless as to what to get!…[Read more]

]]> eb6c45c78dcd093919d634cf6a8a655e HelenWatkinson replied to the topic A short post. in the forum General http://www.myeloma.org.uk/forums/topic/a-short-post/#post-125281 Thu, 03 Dec 2015 00:54:11 +0000 Hi Andy
I’m back from Austria – very nice, beautiful, clean pretty chocolate boxy villages and gorgeous Salzburg, did some walks in the snow and the Christmas markets. Quite festive, but very cold -7 at night and -4 during the day.
Good to see you recovering well, got all your Christmas shopping done yet? I haven’t – clueless as to what to get!…[Read more]

]]> c79fdddc9ef2f032f44af9d5887d2723 HelenWatkinson replied to the topic One year on in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/one-year-on/page/2/#post-124985 Fri, 13 Nov 2015 00:34:34 +0000 Dear Eve
I do hope I don’t really sound as though I’m giving up on hope, I’m not, though I suppose that the constant round of treatment is getting very wearing at times and it becomes more difficult to sound as optimistic as I used to. Soon it will be 5 years – when I say it like that it sounds like a long time really and I’m pretty well despite…[Read more]

]]> ac834ff9ab9450d3fda173c74283834f HelenWatkinson replied to the topic 4th Anniversary - where to next? in the forum General http://www.myeloma.org.uk/forums/topic/4th-anniversary-where-to-next/page/4/#post-124984 Fri, 13 Nov 2015 00:23:41 +0000 Hi Jan
I seem to have been absent again, I blame the poor internet signal I am subject to here! I must get this iPad seen to! Number one son has job with apple care now so will get him to fix it I think! The music business is now an evening thing, I think he realises that until he gets his lucky break he has to earn a living somehow!
How is the…[Read more]

]]> 35011606b9c57ed802550dec64e99151 HelenWatkinson replied to the topic Just a little update on my progress. in the forum General http://www.myeloma.org.uk/forums/topic/just-a-little-update-on-my-progress/#post-124983 Fri, 13 Nov 2015 00:01:43 +0000 Hi Andy
Good to see you back on form again, are you getting out and walking to the pub yet or just rambling round the house? It’s not nice being so poorly but we are so at risk of infections with the dex and the pomalidomide, my neutrophils have been at 1 or less for a year now. I’ve completed a full year on pomalidomide now, started cycle 14…[Read more]

]]> 580f4400441bbe4da05db40ab85ee642 HelenWatkinson replied to the topic One year on in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/one-year-on/page/2/#post-124537 Tue, 06 Oct 2015 23:46:12 +0100 Dear Eve
I’m so glad to see your face brighten up this page, I’m trying not to be so addicted to the iPad and ration my sessions a bit, so I missed your post! And anyway since my last relapse my story isn’t really a ‘good news’ story so I’m more reluctant to post! I wish I had more of your bluntness.;) I can’t do Twitter and am banned from face…[Read more]

]]> f859ad5d2086f4cb96b12601bfed6649 HelenWatkinson replied to the topic Relapse in the forum Treatment http://www.myeloma.org.uk/forums/topic/relapse-3/#post-124536 Tue, 06 Oct 2015 23:29:45 +0100 Hi Susie
Sorry this is so tardy, I don’t have any pps. My pp at diagnosis was 2.9 and light chains 800. But bone marrow around 60% myeloma with some lymphoma characteristics … Such is the individuality of the disease. Since then when I relapsed treatment started again when my light chains got to 30% of the diagnosis number and bone marrow at…[Read more]

]]> 1abc19038eab381111a68ee8334cc018 HelenWatkinson replied to the topic 4th Anniversary - where to next? in the forum General http://www.myeloma.org.uk/forums/topic/4th-anniversary-where-to-next/page/4/#post-124535 Tue, 06 Oct 2015 23:02:57 +0100 Hi Jan
I’ve just been reading your post to Maureen and see that you are now starting the Velcade, hope this all goes well, pace yourself with it, the fatigue I find is still very unpredictable. And go for walks with lots of tea stops! I did find it a bit nippy with the pn in the feet but it always settled down with the week off, and if you are on…[Read more]

]]> 822222b6b40f2600e5fff88332581716 HelenWatkinson replied to the topic In remission in the forum General http://www.myeloma.org.uk/forums/topic/in-remission-2/#post-124534 Tue, 06 Oct 2015 22:44:03 +0100 Dear Maureen
I’ve not been on here for a while but I’m delighted to hear that Ian is as well as this, you must be very relieved and happy. Get all those holidays you missed booked and enjoy the sunshine.
Love Helen

]]> 78891830246c853653a6220459fed39b HelenWatkinson replied to the topic 4th Anniversary - where to next? in the forum General http://www.myeloma.org.uk/forums/topic/4th-anniversary-where-to-next/page/4/#post-124218 Fri, 18 Sep 2015 07:08:19 +0100 Hi Andy are you better now? I’m languishing here with an awful cold, hoping it doesn’t materialise into anything worse! I’m about to cancel my lunch date and head back to bed- I hate feeling ill!
I’m on cycle 12 now and I’m still ok on it
Love Helen

]]> ee8a189129e21b37bc495549f15266fd HelenWatkinson replied to the topic 4th Anniversary - where to next? in the forum General http://www.myeloma.org.uk/forums/topic/4th-anniversary-where-to-next/page/3/#post-124217 Fri, 18 Sep 2015 07:04:42 +0100 Dear Jan
I’m sorry to hear about the move to treatment again- you will find it manageable but it’s such a blow to know that it has relapsed to this extent, even though it’s been on the cards for such a while. I found Velcade a bit unpleasant- it gave me peripheral neuropathy the 2 days after I had it, but always settled back to normal every cycle.…[Read more]

]]> b865525f499bee7fae3332c7d0ea2c6e HelenWatkinson replied to the topic Dexamethasone - hoarse voice ? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/dexamethasone-hoarse-voice/#post-123846 Wed, 02 Sep 2015 00:22:27 +0100 good evening gentlemen,
I have this trouble too, an assume dex is the problem, no pain but husky. My husband says it’s quite nice!!!!
Helen

]]> 108a86b0e886ad3089ae5a1c0f42f61c HelenWatkinson replied to the topic Relapse in the forum Treatment http://www.myeloma.org.uk/forums/topic/relapse-3/#post-123845 Wed, 02 Sep 2015 00:13:34 +0100 Dear Susie
You are allowed to feel like this, it’s so overwhelming, just when you think it’s all going ok , you get clobbered again and have to start from square one, it’s a bit like snakes and ladders and it is hideous. I couldn’t believe I was relapsing after my SCT so didn’t ask for the numbers for 2 months – until I was told I had to be…[Read more]

]]> f6987b789e0e9ddf88e61f92fcf565c4 HelenWatkinson replied to the topic 4th Anniversary - where to next? in the forum General http://www.myeloma.org.uk/forums/topic/4th-anniversary-where-to-next/page/3/#post-123844 Tue, 01 Sep 2015 23:40:11 +0100 Hi Mavis and Andy and Jan if you are there
Another dex night – midway through cycle 11 and facing the long night of reading and late night TV – son back from uni and still no work! He says he needs a holiday ! – I’m finding this very stressful so have given up whinging at him , though a bad dex day tomorrow might galvanise him into action!,
I’m…[Read more]

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