Myeloma Forum | DorothyWilliams | Activity https://forum.myeloma.org.uk/members/Dorothy/activity/ Activity feed for DorothyWilliams. Tue, 21 Apr 2026 13:34:13 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 cf4671fdd30dc09744f404385ddb0d5f DorothyWilliams replied to the topic Dry and Brittle Fingernails in the forum General http://www.myeloma.org.uk/forums/topic/dry-and-brittle-fingernails/#post-122215 Wed, 20 May 2015 16:17:08 +0100 Hi Janet
I have the ridges on my fingernails, hey break easily and ‘peel’ too. I find the coconut oil is great on my feet and hands too in fact on all my skin. I have tried lots of creams but this seems to be the best so far. Just another side effect but as you say we are still here. I am being admitted on Monday 25th for SCT my first was 11 hers…[Read more]

]]> 142d63607c1417c233e5107d7ddc36da DorothyWilliams replied to the topic Dry and Brittle Fingernails in the forum General http://www.myeloma.org.uk/forums/topic/dry-and-brittle-fingernails/#post-122161 Sun, 17 May 2015 15:40:45 +0100 oops consultant dentist…

]]> 2d856044de340b40acdca988ccb54878 DorothyWilliams replied to the topic Dry and Brittle Fingernails in the forum General http://www.myeloma.org.uk/forums/topic/dry-and-brittle-fingernails/#post-122160 Sun, 17 May 2015 15:40:08 +0100 My nails dry and split constantly I put coconut oil on them. My teeth have also been affected but I am seeing a consultant dents o keep them in check. So far no need for false teeth !!! Good Luck.

]]> 58b5098aff6b107d24f581ca06fda7f6 DorothyWilliams replied to the topic Stem cell transplant or no? in the forum Treatment http://www.myeloma.org.uk/forums/topic/stem-cell-transplant-or-no/#post-122159 Sun, 17 May 2015 15:37:04 +0100 Difficult to read your message BUT I had a stem cell transplant 11 years ago It worked and gave me 11 years remission – I am just facing another SCT hope to have another 11 years.

]]> 38e49921139374dc979651a103554784 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/7/#post-121237 Wed, 11 Mar 2015 14:31:46 +0000 Oh Jeff I am so glad you had a positive consultation the consultant sounds helpful and supportive, and willing to listen to you.
You will feel more at ease knowing you can sort your daughter and settle her in close by this will take some pressure off you.
All hospital car parks are manic, there is never enough space and always a struggle to get…[Read more]

]]> c55275682aca01118827bfe0eb307a4b DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/7/#post-121137 Wed, 04 Mar 2015 14:09:18 +0000 Hi Jeff
Doing ok just needing to rest more it seems
Just back from the hospital. 11 Staples removed (ouchie ouch). Mr Thambriaj, my consultant, is pleased, nothing unexpected happening, will take another three months or so to settle all the skin, nerves, tissues, tendons and blood vessels that he had to move out of the way in order to operate on…[Read more]

]]> 16b3e3c5f16806c916ba92179663ad37 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/6/#post-121101 Mon, 02 Mar 2015 19:29:39 +0000 Hi Susie

It takes some time for all the drugs and such to get out of your system. I think we always expect that the treatment ends and we are well, it takes time to rebuild immunity, to feel confident and to be the positive people we were before treatment. You have been through a great deal and need time still to rest and recover from the…[Read more]

]]> 343b0beb876700336cb0183f35652ac3 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/6/#post-121003 Thu, 26 Feb 2015 12:42:45 +0000 Hi All
Susie and Jeff thank you for your lovely thoughts you are so supportive. The operation was longer and a bit more complex than expected but the consultant is pleased with how things went and my progress. I was in theatre 8 hours then ICU for 2 days but I was home on Friday just 3 days after the op. Having the dressing changed daily,…[Read more]

]]> 36fac1af28b7762375e55b5135ca118f DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/6/#post-120764 Wed, 11 Feb 2015 14:35:37 +0000 Hi All
You are an amazing group of people and we are all coping in different ways, with it seems some different treatments.
I wish you all well
Susie thank you for your lovely message
Andy – yes every day is a bonus and a blessing
Jeff – thanks again good to hear of someone else who has had the op.
David – I pray for good results for you

Keep…[Read more]

]]> 0c4cf65d17617e8c8910d7dbbde53e20 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/6/#post-120763 Wed, 11 Feb 2015 14:31:03 +0000 Hi Jeff
Thank you so much for your encouragement and support. It is hard to relax and not think about the operation. The ‘team’ are very professional but although they can tell me the technical side they can’t explain how it actually feels to go through treatment and operations. Although I am still tense I just want it to be over now so I can…[Read more]

]]> 7ed8f8576c010d165fe632c6c60f8ba2 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/6/#post-120710 Mon, 09 Feb 2015 18:42:25 +0000 Hi Susie

Am booked in for spine surgery on 17th February so a little worried at the moment. However the team are very positive so I have to put myself in their hands.
Praying for a positive/good outcome

Hope all is well with you Susie
Keep smiling

Best wishes

Dorothy

]]> aeaa9c9bf196acd6bf1361216e669c50 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/6/#post-120672 Sat, 07 Feb 2015 20:14:04 +0000 Hi Susie

Cant help with any advice but I want you to know I am thinking of you and hope that you can get advice from your team and from others who are at this point so that you can make an informed decision

This is indeed a mind bending disease but it will not defeat us- keep strong and positive

Bless you

Dorothy xxx

]]> 124ea1525ac1b3b95a6cb48e9927e326 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/5/#post-120521 Mon, 26 Jan 2015 00:07:16 +0000 Hi All
There are days when we all feel the need for some support. Little things can set us off but little things can also lift us up, a kind word, a phone call, a smile, a memory. Jeff you should never feel ashamed of yourself as we all have down days no need to beat ourselves up, just pick ourselves up. The treatment itself can make us feel…[Read more]

]]> 4d96dbd1272eea1577c712c7f393755b DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/5/#post-120490 Thu, 22 Jan 2015 18:10:33 +0000 Its good that we can support each other
Keep getting better friends

Dorothy

]]> 05e5fd8479ab05f62c92969f1e0e5194 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/5/#post-120488 Thu, 22 Jan 2015 17:52:49 +0000 Hi Susie and Jeff
Good news from both. I have jut had my stem cells harvested but have some spine involvement so not sure if and when transplant may take place
Love and prayers for all

Dorothy

]]> 746171056236eb8e0b30663d9892725e DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/4/#post-120110 Sat, 27 Dec 2014 18:45:23 +0000 Brilliant news Susie Praying that your PP’s continue to drop. Hope you enjoyed Christmas. So glad you feel able to go forward again.

I finished cycle 8 and am now on course for a stem cell transplant, seeing the team on 2nd January, although I have an MRI on 31st December because of lesions on my upper spine.
Still the treatment is working I…[Read more]

]]> b912330984f8d841cec60e2daac84329 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/4/#post-119780 Mon, 01 Dec 2014 16:19:44 +0000 Hi Susie

Hope you get a good response from the secretary and yes they should give you copies of all the letters.

You have had a fantastic response all ready 63 – 8 in two cycles. I am on Cycle 8 and still have the Septarin and all the other raft of drugs. I started with 4 cycles but then went to 6 then 8 my Proteins came down slowly from 49 to…[Read more]

]]> 8ef5da670e28a3c1f7e7f8e35dc22c36 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/3/#post-119753 Sat, 29 Nov 2014 01:13:17 +0000 Hi Susie
Yes I am on Septarin (co- trimoxozole)
I always write a journal and questions before I go to the consultant meeting – and I always write what he has said and any response to questions as it helps me remember later.

And Yes I always receive copies of letters after each consultation I keep them in a file and mark anything I want to ask…[Read more]

]]> 4bc99b113c794ca3b07bd045245bebb7 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/3/#post-119695 Wed, 26 Nov 2014 21:22:18 +0000 Hi Susie
Sounds like you have a very poor team and consultant. I cannot praise my team enough, although there is a new registrar who is less than helpful …but i have are a complaint about his manner he messed up my drugs and appointment time ..easily sorted by the admin in my team. We had a coffee morning this week in the clinic and the…[Read more]

]]> 6044b9410edccb64f061852031e0bf7a DorothyWilliams replied to the topic What's going to happen next in the forum Carers http://www.myeloma.org.uk/forums/topic/whats-going-to-happen-next/#post-119639 Fri, 21 Nov 2014 21:49:09 +0000 Not an expert just a relapsed patient. My paraproteins began to rise slowly but took well over year or so to get to the point when extra investigations were needed. I am now on Velcade treatment regimen after X-ray, MRI, ultrasound, bloods etc and consultations. It is hard to give any advice as every patient is different and consultants have their…[Read more]

]]> 9dfbc38d7818ce8e3e80c308a7f2a0d4 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/3/#post-119638 Fri, 21 Nov 2014 21:31:09 +0000 I am on cycle 8 now ….last one and have some mouth soreness again no ulcers. Try Nystatin from your doc or hospital. I also find ice chipped and sucked works well. I have loads of ice with cold drinks and have to have hot drinks really hot. My taste is always up and down, I have real difficulty with taste and smell too. I have fizzy water and…[Read more]

]]> 9dffa3fd5af1a1c97e9e9cd3b583086d DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/2/#post-119247 Sun, 02 Nov 2014 23:07:35 +0000 Hi Susie So glad you are feeling more positive about the treatment and doing well on your third cycle. I agree the 8th day is often the worst but not too difficult once you know how to deal with the side effects.
Difficult to say about the referral as the consultant will want you to have the best possible treatment – it is worth discussing this…[Read more]

]]> 40e846a0858773dc4e20eacbeafe3165 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/2/#post-119173 Wed, 29 Oct 2014 22:12:40 +0000 Hi Susie
Glad you are feeling more positive today – sorry you live so far from me, do try the macmillan nurses, I have a specialist nurse I can contact any time, He works at the Royal Liverpool and is part of the team. He is amazingly knowledgable and supportive on all sorts of levels not just the myeloma, but benefits, access to alternative…[Read more]

]]> ef4e7e0cc73202f61497189fd8124f0f DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/2/#post-119149 Wed, 29 Oct 2014 02:36:39 +0000 Hi Susie – hope all is going well with your treatment, I have just started cycle 7 and will go on to 8 cycles now as the ops are now 6.7 so my consultant is sure they will continue to drop. Yes I agree the side effects of treatment are a struggle but you will get through with help,support band a positive outlook. I try to concentrate on the good…[Read more]

]]> ab96e5d958844085655f30e55f57ea89 DorothyWilliams replied to the topic I need encouragment in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-need-encouragment/page/2/#post-119034 Thu, 23 Oct 2014 19:12:12 +0100 Hi Susie
Just reading through a few post and found yours, I have relapsed Myeloma and am on cycle 6 od Velcade, cyclophosomide and dexamehtasone I am exhausted most days and have the side effects you mention. However to encourage you I had initial treatment 10 years ago with a stem cell transplant and I truly believe it gave me a good/better…[Read more]

]]> 95fa029a6b3cec22c3f4aed2b68b71eb DorothyWilliams replied to the topic Remission no 1 is over in the forum Treatment http://www.myeloma.org.uk/forums/topic/remission-no-1-is-over/#post-118516 Tue, 30 Sep 2014 17:18:12 +0100 Just reading your post I too have blurred eyes but can assure you it gets better after the treatment stops. Keep positive and keep smiling. I had CVAD and thalidomide 10 years ago and have just relapsed – am now on Velcade I am now cycle 6 and still responding well .

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