Myeloma Forum | PatriciaGriffin | Activity https://forum.myeloma.org.uk/members/PatG/activity/ Activity feed for PatriciaGriffin. Tue, 14 Apr 2026 14:35:36 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 7fe124a61d1f9b6c27fb38666ef64194 PatriciaGriffin replied to the topic Kidney problems! in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/kidney-problems/#post-122096 Fri, 08 May 2015 18:25:15 +0100 Hi Rosemary, lovely to hear from you and hoping the CVD has done the trick. My biggest problem at the moment is my kidneys and not the Amy although the light chains are rising slowly again. General concern us of opinion is that this may be due to the kidney problems and not necessarily the Amy. Will wait and see. I dialyse 3 times a week but my…[Read more]

]]> dce543f21251c0c1cfb48e51f427199a PatriciaGriffin replied to the topic Travel Insurance in the forum Under 50s http://www.myeloma.org.uk/forums/topic/travel-insurance-4/#post-120328 Fri, 16 Jan 2015 17:14:46 +0000 As your sister is over 70 have you tries Age UK? I took out a policy with them to cover a cruise in June and have just had to cancel as my kidneys decided they have had enough and I had to start dialysis on Christmas Eve. The claims lady has been terrific and the cover offered is comprehensive. Worth a try?

]]> ebe86aae16c0dd8faff7dd7581680aea PatriciaGriffin replied to the topic AL amyloidosis..... Cardiac Amyloidosis in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/al-amyloidosis-cardiac-amyloidosis/#post-119839 Fri, 05 Dec 2014 12:52:30 +0000 Hi Linsey,
I’m not sure I will be able to help much as I have no cardiac involvement. Mine is kidneys, liver, spleen with minimal nerve involvement. It has destroyed my kidneys and I am in pre-dialysis talks at the moment. That said the Amy is stable and has been since finishing treatment in June 2013.
I had to have the twice weekly cel are…[Read more]

]]> e3e5767d93c1761ecb797e2e21d4d247 PatriciaGriffin replied to the topic Kidney problems! in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/kidney-problems/#post-119478 Fri, 14 Nov 2014 21:58:26 +0000 I had to look up LCDD and now I can see the worries about your kidneys. But you know renal failure will not kill you, that’s what dialysis is for! Not the most pleasant of paths but much much better than the alternative.
I found I was much more breathless while on VCD chemo but that has got considerably better until a few weeks ago. I have to have…[Read more]

]]> 2448bc3ba10dc0f171588c3c585f680b PatriciaGriffin replied to the topic Kidney problems! in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/kidney-problems/#post-119454 Fri, 14 Nov 2014 09:18:37 +0000 Hi Sharon,
Still no further along dialysis route but SCT is definitely out of the equation. Added to everything else I seem to have had a heart attack at some time ?? How do you have a heart attack and not know it for heavens sake? It was discovered following an ECG taken at GP surgery on a yearly MOT check up. Now I am having cardiac…[Read more]

]]> fa4090d05fa6cdb9c23718634da577f3 PatriciaGriffin started the topic Kidney problems! in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/kidney-problems/ Mon, 03 Nov 2014 09:10:07 +0000 Well Amy has finally destroyed my kidneys. The doc has said I will be on dialysis ‘within weeks’. She has arranged for people to discuss the various dialysis options to see which is best for me. Bit daunting really but no doubt will come to terms with it eventually . Just hope the Amy stays stable with everything else going on. I go to NAC at the…[Read more]

]]> 499cf26c8bd24f9bd2ab73d74d0d4962 PatriciaGriffin replied to the topic Back in the UK from Bulgaria in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/back-in-the-uk-from-bulgaria/#post-118764 Mon, 13 Oct 2014 18:06:32 +0100 Hi Sharon,
Sorry no one has come back to you before now. I don’t think there are too many people on here with Amy. I was diagnosed 2 years ago now with kidney, spleen and nerve involvement and have had VCD for 8 cycles. My Amy is stabilised at the moment but the kidney damage appears to be getting worse. I am due to have counselling regarding…[Read more]

]]> 6e4ebb33f1bc25c7e62da6e9a2392ad1 PatriciaGriffin replied to the topic OK so this is a bit scary now in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/ok-so-this-is-a-bit-scary-now/#post-116724 Thu, 17 Jul 2014 08:28:46 +0100 Oh Sharron, it’s like a window on my life! You are a bit ahead of me as I have an initial consult with the transplant team on 23rd September after our return from holiday. Until then I am putting the whole thing to the back of my mind and concentrating on the holiday. I feel OK except like you I am unable to do all the things I used to do before…[Read more]

]]> cde505a68bee0dc6964bd7c76233011e PatriciaGriffin replied to the topic velcade and dex in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/velcade-and-dex/#post-116598 Mon, 14 Jul 2014 14:10:55 +0100 Hi Joyce, so sorry to hear about the loss of your husband. It must be hard for you especially as you are fighting such a tough disease. I have AL Amy but no Myeloma and was treated with 8 cycles of VCD finishing last June. Unfortunately my protein output is now very high and my eGFR is falling. I will be seeing the transplant team on 23 September…[Read more]

]]> da58a640001c5e511839dd5e64a6caf9 PatriciaGriffin replied to the topic OK so this is a bit scary now in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/ok-so-this-is-a-bit-scary-now/#post-116513 Wed, 09 Jul 2014 14:13:58 +0100 Thank you John and Rebecca . I think I was panicking about the whole thing when I posted but have come to terms with it more now, especially after ‘talking’to a fellow sufferer who had SCT at about the same age and with the same Amy involvement and at the same hospital. I see the consultant next week and will have more news then. Like you Rebecca…[Read more]

]]> 1406561601de2ffaa1ce650966dd6f7b PatriciaGriffin started the topic OK so this is a bit scary now in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/ok-so-this-is-a-bit-scary-now/ Wed, 25 Jun 2014 07:10:53 +0100 I had a consult at LRI yesterday and was knocked sideways when the consultant started talking about SCT! After VCD finished last June I was deemed ‘stable’ but over the last 3 months my eGFR has declined a little, but the main reason the consultant wants to go to SCT is the amount of protein I am still losing in my urine. It was such a bombshell I…[Read more]

]]> 532b3bd862e4754bd9d0dab448146375 PatriciaGriffin replied to the topic AL amyloidosis..... Cardiac Amyloidosis in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/al-amyloidosis-cardiac-amyloidosis/#post-116133 Sun, 22 Jun 2014 08:04:03 +0100 Hi Sandra, I don’t have cardiac Al mine is kidneys, liver, spleen and nervous system so I can’t help with the cardiac symptoms I’m afraid. I was diagnosed Sept 2012 nod had 8 cycles of VCD. Velcade had to be reduced to once weekly as my body could not take the twice weekly treatment. The cyclophosphamide thinned my hair, the velcade increased my…[Read more]

]]> 4094cac0acf039bc08c3f454769416d8 PatriciaGriffin replied to the topic Fingers don't work properly now in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/fingers-dont-work-properly-now/#post-116035 Mon, 16 Jun 2014 06:27:22 +0100 Hi Helen,
It’s such a nuisance isn’t it? But to be honest I have been very lucky and the Amy is labelled ‘stable’ at the moment. The kidneys seem to be taking a bit of a bashing, but no treatment on the cards as yet so fingers crossed.
Although I haven’t posted for ages I have been following everyone’s journey and laughed and cried with the rest…[Read more]

]]> 81181a3b1d931a3b783429d1e97aed30 PatriciaGriffin started the topic Fingers don't work properly now in the forum AL amyloidosis http://www.myeloma.org.uk/forums/topic/fingers-dont-work-properly-now/ Sun, 15 Jun 2014 11:26:52 +0100 Soo frustrated! I finished treatment last June (VCD) but am still suffering with peripheral neuropathy in hands and feet. I thought it would eventually go away but although much better still plagues me. Especially today when I am trying to do some alterations to dresses I have bought for my holiday. Anyone any experience in how long it takes to…[Read more]

]]> 18d86affa37ced4914a21cdefece4614 PatriciaGriffin replied to the topic Lightly chained to the Roller Coaster Ride in the forum General http://www.myeloma.org.uk/forums/topic/lightly-chained-to-the-roller-coaster-ride/page/5/#post-95015 Thu, 23 May 2013 04:38:12 +0100 Hi Helen,
Glad to hear that things went well for you. I get a 'mark' on my stomach after the injections, one side more than the other for some reason, and so make sure I alternate sides so that it doesn't get too bad. The skin does get very dry there after a while so plenty of moisturiser is called for.
As for the Day Clinic – well I have the…[Read more]

]]> c9f6ea1305d8b3684062cc7674632eb2 PatriciaGriffin replied to the topic Lightly chained to the Roller Coaster Ride in the forum General http://www.myeloma.org.uk/forums/topic/lightly-chained-to-the-roller-coaster-ride/page/4/#post-95001 Sat, 18 May 2013 16:58:26 +0100 Hi Helen, I have been on VCD since Sept. initial dose of twice weekly had to be reduced to once a week x 4weks then a week off. I have found that after treatment on Tues, Weds and Thurs are not so bad and those are the days I plan to do things. Fri is a sit and read a book day and some Sats are the same. My main problems are weakness, shaking and…[Read more]

]]> 878a5295deb126eb6abdfffb4811d074 PatriciaGriffin replied to the topic My brother. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/my-brother#post-87610 Fri, 10 May 2013 11:54:04 +0100 Hi Nicki,
I am so very sorry for your loss. Your brother was far too young and I hope you get some answers as to why he died so suddenly. I have Amyloidosis but fortunately with no cardiac involvement. I wonder if the amyloid deposits on his heart had damaged it to such an extent that it caused a massive heart attack? The amyloids take a…[Read more]

]]> cda30e968d7600cd2c72d7ccd42f29a7 PatriciaGriffin replied to the topic Prioritising in the forum General http://www.myeloma.org.uk/forums/topic/prioritising/page/2/#post-95194 Sat, 04 May 2013 16:08:22 +0100 Oh sorry Eve. I could have sworn I read somewhere that you were Yorkshire. Nevertheless, I do like your straight talking and common sense. I have ended up in the midlands via Germany and Africa so I have a mixed up accent too. Can't help it when you travel around a bit can you? The dust is settling nicely >:-) and I see another company on…[Read more]

]]> f737653101de488ca3a3a2a5ccd545cc PatriciaGriffin replied to the topic Prioritising in the forum General http://www.myeloma.org.uk/forums/topic/prioritising#post-95188 Fri, 03 May 2013 08:55:35 +0100 Thank you everyone for your encouraging messages.

Hi Mavis…I have AL Amyloidosis, similar to mm but without any bone problems and therefore no pain for which I am eternally grateful. It affects the organs, in my case kidneys, liver and spleen, but like mm is very individual and varies in each person. The treatment is down the same route as mm…[Read more]

]]> a2b766beeb556c2b39549b4719073ee2 PatriciaGriffin started the topic Prioritising. in the forum General http://www.myeloma.org.uk/forums/topic/prioritising Thu, 02 May 2013 03:40:59 +0100 I have just finished cycle 6 VCD and have come to the decision that the side effects of all this poison I am taking has to be addressed. While I get two goodish days while on Dex(notice the time!) I have enough roughish days where I can do very little (very shaky, breathless and oh the PN) – so I have taken the bull by the horns and am getting…[Read more]

]]> 0eac01e741cc06ad5df056fdf195661f PatriciaGriffin replied to the topic Lightly chained to the Roller Coaster Ride in the forum General http://www.myeloma.org.uk/forums/topic/lightly-chained-to-the-roller-coaster-ride/page/4/#post-94994 Thu, 02 May 2013 02:58:52 +0100 Good news about the back(I think!), well a lot better than it could have been anyway. And really good news about the hair. We all need to keep our morale flying high in any way we can. I saw an older lady on the One Show last night in a section they did on a charity fund raise where they ladies all wore their wedding dresses. She has secondary…[Read more]

]]> 3fe0de080e4dabbdb50b73375062c923 PatriciaGriffin replied to the topic Lightly chained to the Roller Coaster Ride in the forum General http://www.myeloma.org.uk/forums/topic/lightly-chained-to-the-roller-coaster-ride/page/3/#post-94989 Mon, 29 Apr 2013 07:58:07 +0100 Hi Helen, I wish you all the very best on this next part of your journey. I really understand about hair …. and make-up come to think of it… and try to keep the external looking something like normal. I have had to give up with the hair as it has gone so thin (I am on VCD)that I have had it cut very short and wear a really funky wig when I go…[Read more]

]]> e0d6060b561c3cfc8450cad735b4522c PatriciaGriffin replied to the topic Now how much "Off Topic" is this in the forum Off topic http://www.myeloma.org.uk/forums/topic/now-how-much-off-topic-is-this#post-110731 Wed, 24 Apr 2013 09:02:36 +0100 Love it Tom!!!

]]> dd49d9ad449b51c7bb1579d67f75d24a PatriciaGriffin replied to the topic yet another relapse in the forum General http://www.myeloma.org.uk/forums/topic/yet-another-relapse#post-94945 Tue, 16 Apr 2013 17:43:14 +0100 Hi Terry,
I have Amyloidosis which apparently cannot be cured but can be managed. How managed I will have to wait and see at the end of my 8 cycles of VCD. Unlike you I was past retirement age but fit and healthy and really enjoyed my job working with undergraduates at Loughborough University. Initially I was hoping to go back to work once chemo…[Read more]

]]> bb5053e23a6b90cec2ea062918b415af PatriciaGriffin replied to the topic 2 weeks in hospital in the forum General http://www.myeloma.org.uk/forums/topic/2-weeks-in-hospital#post-94800 Thu, 11 Apr 2013 22:01:00 +0100 Hi Jo,
I was wondering where you were.Glad to hear you are better now. I had a bout of pneumonia after the first lot of Velcade. Frightened me to death. Still get a bit chesty for a couple of days after treatment even now, but that's where it stays thank goodness. I am allergic to so many anti-b's it frightens me when I get an infection. I am…[Read more]

]]> d16e16c9b52c3255688a801554c18951 PatriciaGriffin replied to the topic A question for the ladies in the forum Side-effects http://www.myeloma.org.uk/forums/topic/a-question-for-the-ladies#post-105179 Thu, 28 Mar 2013 05:31:16 +0000 Hi Lesley,

I think that this product would be Ok if you feel like doing it yourself as it does not have ammonia and is permanant. If you copy and paste into your browser it will give you all the gen.
http://www.garnierusa.com/_en/_us/our_products/range-haircolor.aspx?tpcode=OUR_PRODUCTS^PRD_HAIRCOLOR^OLIA^OLIA_HOME
I have stopped colouring…[Read more]

]]> c48b471dd0b6785483fe77eb6f92bfb9 PatriciaGriffin replied to the topic Velcade..............ups and downs !!! in the forum General http://www.myeloma.org.uk/forums/topic/velcadeups-and-downs-#post-94622 Tue, 19 Mar 2013 09:05:36 +0000 Hi Megan,
Thanks for the heads up! Just put a call in to Ellen and you are right. No green tea from now on then. Will have to find an alternative for when I can't stomach ordinary tea. I am quite surprised that I haven't been told this and will bring it up next time I am in clinic.
Keep well everyone
Pat
xx

]]> c05e2d91fc30fc637ae0070c0af53fda PatriciaGriffin replied to the topic Velcade..............ups and downs !!! in the forum General http://www.myeloma.org.uk/forums/topic/velcadeups-and-downs-#post-94619 Tue, 19 Mar 2013 06:06:14 +0000 Hi Trish and Peter
I am currently on VCD for Amyloidosis and I have very similar side effects to Peter. I have one injection each week for 4 weeks as I could not take 2 each week. I have treatment on Tuesday and by Friday I have a cough which recedes by Monday, ready for the next round. I am very tired and have little energy and stamina. The Dex…[Read more]

]]> 74de77744d3bdf92a275c7231d917d2b PatriciaGriffin replied to the topic new arrival in the forum Off topic http://www.myeloma.org.uk/forums/topic/new-arrival1359543044/page/2/#post-110667 Mon, 18 Mar 2013 09:13:09 +0000 Beatrix came home today! And what is more I had a most wonderful 30 minutes on face time with my daughter Jess cuddling her at home. I just wanted to reach out and hug them both. So nice to see them out of a hospital environment. On cycle 5 VCD now so only 3½ more to go before I can go to Canada!
Keep well everyone
Pat
xx

]]> 73054ae81c4105454080c83a0ad8b8fe PatriciaGriffin replied to the topic Three little words...... in the forum General http://www.myeloma.org.uk/forums/topic/three-little-words#post-94456 Thu, 21 Feb 2013 03:56:16 +0000 Wonderful news:-D Welldone you two. Long may it last.
Keep well
Love
Patxxx

]]> 78cadbfcb222ca72150392aa6bf464da PatriciaGriffin replied to the topic Little things mean a lot in the forum General http://www.myeloma.org.uk/forums/topic/little-things-mean-a-lot#post-94394 Sat, 16 Feb 2013 06:52:37 +0000 Hi Jo,
Can't see any reason why you can't have your hair coloured. If it makes you feel better why not? Worse thing that can happen is it all falls out and then you can get a funky wig:-D Mine is still thinning at a rate of knots, Kev says I will have to go outside to brush my hair soon as the fallout is getting so great (cheeky b*****r)I have…[Read more]

]]> 4ffcd509850dfd03c2c9bfcb996acd2f PatriciaGriffin replied to the topic Little things mean a lot in the forum General http://www.myeloma.org.uk/forums/topic/little-things-mean-a-lot#post-94390 Fri, 15 Feb 2013 16:57:36 +0000 Oh Dai,
That is so lovely. It even makes the Dex dump I have today seem better. Thank you.
Love
Pat
xxx

]]> 4e537f7ef011aed9bfd7e0931b6f28c7 PatriciaGriffin started the topic Little things mean a lot. in the forum General http://www.myeloma.org.uk/forums/topic/little-things-mean-a-lot Fri, 15 Feb 2013 04:09:57 +0000 This might be daft but I had just had to share it! Yesterday, for the first time in 6 months, I walked into Loughborough town centre, did some shopping and walked back home. I am so pleased with myself and feel this is a better sign that things are going the right way than all the blood results in the world. Little things mean so much more these…[Read more]

]]> b7125d3b25bbd5669faeb73b814bff8e PatriciaGriffin replied to the topic I was at Hospital Today and consultant said in the forum Treatment http://www.myeloma.org.uk/forums/topic/i-was-at-hospital-today-and-consultant-said#post-101707 Fri, 15 Feb 2013 04:02:03 +0000 So pleased for you Tom. Long may it continue.
Love
Pat
xx

]]> 06cd586410dd0e508719b0f8c22cbbe0 PatriciaGriffin replied to the topic new arrival in the forum Off topic http://www.myeloma.org.uk/forums/topic/new-arrival1359543044#post-110644 Thu, 14 Feb 2013 05:12:11 +0000 Hi Jean,
Just had to say I love your new photo! I can't wait to have a similar one taken but will have to wait until treatment is over to go to Canada for that. My daughter says I should come now and stay with Beatrix in the Neo-natal unit then I would be with her, be infection free and still have treatment. Not sure my bank balance would be able…[Read more]

]]> 39c225e2ea55a393f311f731f71f33a1 PatriciaGriffin 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-101687 Thu, 14 Feb 2013 04:55:22 +0000 Hello Dai,
I just wanted to say that I find your posts most informative and very easy to read. Although not directly relevant to my condition (AL Amyloidosis),because the treatment is so very similar I do find a lot of information on this site very useful. Not to mention the general upbeat nature of the people on here who really make what is a…[Read more]

]]> 82f75f1578c776dd69ad5f9310cd2e94 PatriciaGriffin replied to the topic Relapsing in the forum General http://www.myeloma.org.uk/forums/topic/relapsing/page/3/#post-94186 Mon, 04 Feb 2013 12:52:37 +0000 Hi Ozzy,
Sorry to hear about your reaction to Velcade. Although I have Amyloidosis the Velcade treatment (VCD) is very similar. I started off on 4 treatments over two weeks and then one week off and also ended up in hospital. The reduced frequency to one every week over 4 weeks has proved to be managable, but you should have some medication for…[Read more]

]]> f5f7a7bd6e65aca21fca1a648af55e9e PatriciaGriffin replied to the topic new arrival in the forum Off topic http://www.myeloma.org.uk/forums/topic/new-arrival1359543044#post-110649 Sun, 03 Feb 2013 07:09:21 +0000 Good old retail therapy – works every time. I havn't been able to get any shopping in this weekend so far, but maybe later today. Red velevet sounds very luxurious Jo – well done you.
Keep well
Love
Pat
xxx

]]> f97fad89fe29b5b330ac9a088411d2ad PatriciaGriffin replied to the topic new arrival in the forum Off topic http://www.myeloma.org.uk/forums/topic/new-arrival1359543044/page/2/#post-110654 Thu, 31 Jan 2013 12:09:24 +0000 Oh congratulations Dai. Isn't it lovely? I have been shopping on-line this morning and it feels so wonderful to be buying all these lovely little clothes for Beatrix. I love being a grandma!
Best wishes to your son and daughter in law, they must be over the moon as are you and your wife no doubt.
Love all round then!
Pat
xx

]]> 531ca3d3fb267be69ee3f903815117b5 PatriciaGriffin replied to the topic new arrival in the forum Off topic http://www.myeloma.org.uk/forums/topic/new-arrival1359543044#post-110647 Wed, 30 Jan 2013 21:23:34 +0000 Thanks Jo. I thought you only felt this much love when you had your child, but my goodness, it is just as strong with with your grandchild isn't it?
Had a bit a set back in my treatment – a virus which affected my liver function stopped treatment for three weeks but started again yesterday and have been feeling a bit off today. Better tomorrow…[Read more]

]]> e4552aff10e6c137762e5c1de3fc3093 PatriciaGriffin replied to the topic new arrival in the forum Off topic http://www.myeloma.org.uk/forums/topic/new-arrival1359543044#post-110640 Wed, 30 Jan 2013 11:44:58 +0000 What a lovely little boy, congratulations to you all. I also had good news on Saturday. My daughter and her wife in Canada signed the adoption papers for baby Beatrix born 19th December 2012. She is tiny weighing 2lbs 12oz at the moment but is breathing on her own (still has extra oxygen though) and is feeding well. This is my first grandchild…[Read more]

]]> ab6574bbf073566ba4456e434137cd69 PatriciaGriffin replied to the topic just been diagnosed in the forum Newcomers http://www.myeloma.org.uk/forums/topic/just-been-diagnosed#post-87163 Sun, 20 Jan 2013 11:12:39 +0000 Hi Tebebe,
So sorry you have had to join this forum. I am sure we will be able to help in all sorts of ways.
I have AL Amyloidosis and was diagnosed in August 2012. I have been having Velcade, Cyclophosphamine and Dexamethasone as treatment. Frequency and dose have had to be altered as the initial regimen didn't suit my body at all. I am coping…[Read more]

]]> 56a80cbfe9078f92a629985bb85b35e4 PatriciaGriffin replied to the topic National Amyloidosis Centre in the forum Related conditions http://www.myeloma.org.uk/forums/topic/national-amyloidosis-centre#post-105705 Sat, 15 Dec 2012 08:15:41 +0000 Bears are good Jo. I am more like a stick insect at the moment! Going to get a couple of pairs of jeans in a smaller size today. Fed up with the ones I have at the moment hanging off my bum. Hope the velcade gets better love. You don't need any more things to put up with. Thought I would start on Xmas yesterday and made some sausage rolls. Big…[Read more]

]]> d83a86472ba10134cc91385cb766118c PatriciaGriffin replied to the topic National Amyloidosis Centre in the forum Related conditions http://www.myeloma.org.uk/forums/topic/national-amyloidosis-centre#post-105703 Fri, 14 Dec 2012 08:28:01 +0000 Hi Jo,
Sorry to hear about your transfusions. Hope that improves for you. All good news from NAC in that my bloods show I am responding well to treatment. The scan shows that the amyloids are centered in my kidneys (already knew that with function at 51%),also liver and spleen with no adverse effects to the last two organs yet. The follow up is…[Read more]

]]> 2c5c471c77622cead5f1feb3041402d8 PatriciaGriffin started the topic National Amyloidosis Centre. in the forum Related conditions http://www.myeloma.org.uk/forums/topic/national-amyloidosis-centre Wed, 12 Dec 2012 04:49:58 +0000 Good morning all,
While I follow all the posts on here and am continually encouraged by the optimism of you all in fighting MM and the treatments, I don't comment much as AL is different but the treatment follows the same lines. Neverless, I do think of you all and hope that all outcomes will be positive and that we all have many years of…[Read more]

]]> b9d0dac137e73fa2c069cfe06eb46a09 PatriciaGriffin started the topic Good Moisturiser. in the forum General http://www.myeloma.org.uk/forums/topic/good-moisturiser Fri, 16 Nov 2012 08:12:01 +0000 Just like to share this discovery with all those of you who are suffering (like me) with really dry flaky skin. Aveeno Skin Relief cream is fantastic! I got mine from Chemist Direct on-line but I believe the larger branches of Boots stock Aveeno products. Used after showering my skin still feels soft and moist 24 hrs later. It is not perfumed…[Read more]

]]> 74504f8af4a6a3ed6d8f69deaa97a04b PatriciaGriffin replied to the topic Weird side effect? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/weird-side-effect#post-104906 Sat, 10 Nov 2012 08:26:11 +0000 Hi Jo, hope the MM conference goes well today. I live in Loughborough so quite a long way from you. Had a cardiac MRI yesterday and a very weird reaction to follow. Thought I was going to end up in hospital but managed to ride it out. Let us know how the conference went.
Love and hugs
Pat xx

]]> 620e3d860ddb6b09eca95a4c80c3edbe PatriciaGriffin replied to the topic Weird side effect? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/weird-side-effect#post-104904 Wed, 07 Nov 2012 22:52:18 +0000 Hi Jo, I can't remember how much cylco(Just thrown the box away) but I have to take 8 tablets on days 1/8/15, that's following three out of the four subcut injections that make up each cycle. Dex has been reduced to 10 mg for two days after each velcade. Consultant said that if I was managing OK on this dose she was going to increase the dex for…[Read more]

]]> 3cd01a7499b69e9ad572e78b635b6c89 PatriciaGriffin replied to the topic Weird side effect? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/weird-side-effect#post-104902 Tue, 06 Nov 2012 16:18:59 +0000 Hi Jo, Had no 3 of 4 today and since the dose of both velcade and dex has been reduced I am coping much better. Hope you do too and if I can help with anything I will be only too glad. Got my purple jeans on today – they do help to lift your spirits!
Keep well
Love and hugs
Pat xx

]]> 943d50765061696d7bc8b4de16bf85f4 PatriciaGriffin replied to the topic Weird side effect? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/weird-side-effect/page/2/#post-104910 Tue, 06 Nov 2012 07:40:23 +0000 Hi Peter, It was so encouraging to hear about your side effects and realise that these are 'normal'. It makes it easier to deal with when you know that. I wish you well with SCT in January. I know from reading on here that it is not an easy journey, but oh so worth while. Tom's 'Onwards and Upwards' keeps me going so many times – maybe I should…[Read more]

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