Myeloma Forum | adelaide56 | Activity https://forum.myeloma.org.uk/members/adelaide56/activity/ Activity feed for adelaide56. Mon, 27 Apr 2026 20:47:53 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 dd605c926b80b898144c0656a07604ee adelaide56 changed their profile picture https://forum.myeloma.org.uk/activity/p/53566/ Mon, 30 Jul 2018 00:04:19 +0100 0 ca8fcd9608348b9a4cc7f078bfe074ff adelaide56 replied to the topic Problems with husband's behaviour..... in the forum Carers https://www.myeloma.org.uk/forums/topic/problems-with-husbands-behaviour/#post-137449 Fri, 23 Mar 2018 00:12:44 +0000 Yes I think that’s right….he has had the steroid dose lowered and I think this has helped, also we have had a good chat about things and again this has helped too.  Onwards and upwards!

]]> fa1d8c218c2c9e4bb74709b79ae26b85 adelaide56 replied to the topic Problems with husband's behaviour..... in the forum Carers https://www.myeloma.org.uk/forums/topic/problems-with-husbands-behaviour/#post-137310 Tue, 06 Mar 2018 09:15:17 +0000 Thank you Sarah

It helped me to have a little offload….I think your story shows how very difficult this cancer (or indeed any other cancer) is for everyone involved.  Families, partners and most importantly, the patient.

The range of emotions we all have to deal with takes its toll.  I truly believe that communication and understanding is th…[Read more]

]]> 20ad882db536fa02e79ec17b76c474d9 adelaide56 started the topic Problems with husband's behaviour..... in the forum Carers https://www.myeloma.org.uk/forums/topic/problems-with-husbands-behaviour/ Sun, 04 Mar 2018 21:59:23 +0000 Hi

Has anybody found it difficult to deal with their partners behaviour?  I’m sure I’m not alone but my husband is very reluctant ro communicate with me or anyone else for that matter.

His myeloma returned after a stem cell, giving him 14 months remission.  He was tried on Carfilzomib, but sadly it was no good for him and it was stopped after t…[Read more]

]]> 84158dcc3605d4abd79521fb8502ee9e adelaide56 replied to the topic Here we go again.... in the forum Carers https://www.myeloma.org.uk/forums/topic/here-we-go-again-2/#post-135902 Sun, 12 Nov 2017 01:19:48 +0000 Oh Maureen,  I am so sorry to hear this.  Sending you and your husband our very warm wishes.

it all seems so unfair.  x

]]> ae01678aafe697a5397e6434bb4bcb4f adelaide56 replied to the topic Here we go again.... in the forum Carers https://www.myeloma.org.uk/forums/topic/here-we-go-again-2/#post-135889 Fri, 10 Nov 2017 19:45:43 +0000 Hi Pat

MY husband has just finished 2 cycles of the carfilzomib, it has been problematic as the drug was attacking the red blood cells and platelets, but not making any difference to the myeloma levels.  Anyway after some difficult weeks with many days at the hospital having fluids, blood transfusions and platelets, we have finally had a bet…[Read more]

]]> e6e7290054d118d1425442f17048c0c5 adelaide56 replied to the topic Here we go again.... in the forum Carers https://www.myeloma.org.uk/forums/topic/here-we-go-again-2/#post-135512 Sun, 15 Oct 2017 19:24:40 +0100 Hi Teresa

Thanks for your reply.  We have had a better week this week and some family time today, which has cheered us up no end!  It’s a hard slog and as you say, not always easy to do things when he’s feeling so tired.  But we will cope.

Hope your husband gets to a remission before too long.

Take care

x

]]> 450ad432fe8da1b87bc71fae42c45297 adelaide56 started the topic Here we go again.... in the forum Carers https://www.myeloma.org.uk/forums/topic/here-we-go-again-2/ Tue, 03 Oct 2017 22:49:49 +0100 After a SCT and nearly 2 years remission my husband started on the Carflizomib infusions last week and was very unwell at the weekend.

He had to be admitted to hospital and get his heart checked as he had chest pain and was breathless.  Luckily it wasn’t his heart.

He is very anaemic and will have a blood transfusion in the morning ,…[Read more]

]]> 450ad432fe8da1b87bc71fae42c45297 adelaide56 started the topic Here we go again.... in the forum Carers https://www.myeloma.org.uk/forums/topic/here-we-go-again-2/ Tue, 03 Oct 2017 22:49:49 +0100 After a SCT and nearly 2 years remission my husband started on the Carflizomib infusions last week and was very unwell at the weekend.

He had to be admitted to hospital and get his heart checked as he had chest pain and was breathless.  Luckily it wasn’t his heart.

He is very anaemic and will have a blood transfusion in the morning ,…[Read more]

]]> 2c9f7eacd09cc175465241c070961579 adelaide56 changed their profile picture https://forum.myeloma.org.uk/activity/p/51213/ Tue, 03 Oct 2017 22:31:46 +0100 0 2e09cd1be800cc9530c9e0e0aa3a0088 adelaide56 replied to the topic Paraprotein levels? in the forum Carers https://www.myeloma.org.uk/forums/topic/paraprotein-levels-2/#post-128787 Tue, 12 Jul 2016 20:09:23 +0100 Hi Kevin

thanks for the reply…my husband and I read it and he feels much like you do, that myeloma is an unwelcome intrusion to his, and my life!

We feel we have to just take the advice from the medical team as to what and when treatment may become necessary.  Meanwhile we intend to get on with our lives.

wish you…[Read more]

]]> 16b848df6c8fc818829a147284eb4684 adelaide56 started the topic Paraprotein levels? in the forum Carers https://www.myeloma.org.uk/forums/topic/paraprotein-levels-2/ Tue, 12 Jul 2016 00:06:51 +0100 After a year of good health and remission post SCT…my husband went for his 3 month check and the paraprotein is showing in his bloods again…..it was unmeasurable for the year and is only just showing now. Very low level…

They said not to get hung up on the numbers, and didn’t seem too concerned, but we don’t really understand what this…[Read more]

]]> b185c24b9679ea7af14a927f602293d4 adelaide56 replied to the topic After the transplant... in the forum Carers http://www.myeloma.org.uk/forums/topic/after-the-transplant/#post-124610 Wed, 14 Oct 2015 21:12:08 +0100 Hi Mojo

So far so good…my husband had a paraprotein of 0.8 just before the SCT…he had a successful harvest and then 3 weeks in hospital for the chemo and transplant.  He is now 6 months post transplant with most recent bloods having unmeasurable paraprotein.  Really good news.  It’s not been an easy 11 months, but we are in a better place no…[Read more]

]]> 1a6568641e7cd64cabd4edcd921afeee adelaide56 replied to the topic Good news! in the forum Carers http://www.myeloma.org.uk/forums/topic/good-news-2/#post-124500 Fri, 02 Oct 2015 22:16:23 +0100 Thanks Annlynn and Maureen,

its good to hear some positive news…long may the remissions continue.

xxx

]]> 664aeef6509c9837180533ba326b852d adelaide56 started the topic Good news! in the forum Carers http://www.myeloma.org.uk/forums/topic/good-news-2/ Thu, 01 Oct 2015 20:17:09 +0100 Had some good news today,  6 months post transplant and my husband is doing really well.

blood tests all good and recent Para protein level unmeasurable!  So still going down.

So pleased, my husband has done really well since the transplant and we have a 10 month old Granddaughter who is our joy.

Had a good weeks holiday on Kefalonia and we a…[Read more]

]]> 56bd5b61fdc007eebc913d84700aaefe adelaide56 posted an update: Update....8 weeks post SCT and my husband is doing […] https://forum.myeloma.org.uk/activity/p/39315/ Thu, 04 Jun 2015 23:16:59 +0100 Update….8 weeks post SCT and my husband is doing well…bloods all good a bit anaemic but improved, kidneys fine and paraprotein negligible at 0.8.
The consultant was very positive yesterday. So onward and upward.
We’ve booked a holiday in September and are getting on with our lives.
Long may it last….
Best wishes to all in treatment. x

]]> 0 78302200f27e6303547437b2d9a82bfe adelaide56 replied to the topic After the transplant... in the forum Carers http://www.myeloma.org.uk/forums/topic/after-the-transplant/#post-122075 Thu, 07 May 2015 08:24:28 +0100 Hi Mervyn

I think everyone will have a different experience of the transplant, but it wasn’t too terrible for my husband.  he responded well to the initial chemo tablets, steroid and thalidomide and was feeling really well in the month leading up to it.  harvest was done in one session,  5 hours lying on a bed watching daytime TV….it was go…[Read more]

]]> 0826d11e7337b8822aacfe177d53fe6e adelaide56 started the topic After the transplant... in the forum Carers http://www.myeloma.org.uk/forums/topic/after-the-transplant/ Wed, 06 May 2015 21:41:15 +0100 Hi

well my husband had his transplant 5 weeks ago….he was in hospital for 3weeks and had an infection, but really tolerated the treatment well and is doing well at home.  He is eating ok as long as we don’t talk about food and I cook it!  He still hasn’t got much appetite and gets tired if he does too much.  His first outpatient appointment we…[Read more]

]]> 3455456f8a3946c18932cca3372eaa3a adelaide56 replied to the topic Feeling anxious. in the forum Carers http://www.myeloma.org.uk/forums/topic/feeling-anxious/#post-121749 Mon, 13 Apr 2015 14:14:42 +0100 Very true!  Thanks

]]> e9cdf792babef12c2752c603b9e7c1ff adelaide56 replied to the topic Feeling anxious. in the forum Carers http://www.myeloma.org.uk/forums/topic/feeling-anxious/#post-121728 Sun, 12 Apr 2015 22:34:46 +0100 Time for an update…my husband is in hospital day 11 from transplant.  He has been doing really well….unfortunately now he has an infection so is on IV antibiotics, which we were told would probably happen.  He is completely off his food, but is eating a little and still wants his coffee!  He is being such a model patient, very calm and pos…[Read more]

]]> cd5032c80a1a1b0a314969ec5d383527 adelaide56 replied to the topic Feeling anxious. in the forum Carers http://www.myeloma.org.uk/forums/topic/feeling-anxious/#post-121389 Sun, 22 Mar 2015 20:41:17 +0000 Thank Tony….

]]> 9d6cb327eea4490a5e7f9bb85e19c99f adelaide56 replied to the topic Feeling anxious. in the forum Carers http://www.myeloma.org.uk/forums/topic/feeling-anxious/#post-121381 Sun, 22 Mar 2015 16:29:15 +0000 thank you for the information..

When you say in isolation, does that mean you couldn’t have visitors at all?

 

 

,

]]> 570120de11ed4b14d717d042cde7761b adelaide56 replied to the topic Feeling anxious. in the forum Carers http://www.myeloma.org.uk/forums/topic/feeling-anxious/#post-121374 Sat, 21 Mar 2015 18:16:48 +0000 Hi Carol and Carole!

really helpful replies…thank you.

We are keeping very positive and I am sure my husband and I will cope.

we are lucky to have a lovely supportive family too.

best wishes

Ax

 

]]> 3239c7da1a055cab8c77deccca432ad0 adelaide56 started the topic Feeling anxious. in the forum Carers http://www.myeloma.org.uk/forums/topic/feeling-anxious/ Fri, 20 Mar 2015 21:55:16 +0000 My husband has completed 5 rounds of the tablet chemo and has had his stem cell harvest.  He goes into hospital on 30 March.  he is being fantastic, so calm and brave.

I, on the other hand, have found myself getting more anxious now the transplant is getting closer.  I am keeping this from my husband as I really don’t want to upset him.

I th…[Read more]

]]> 4f6481b08a5d8820c06d43d8544175df adelaide56 replied to the topic Husband just diagnosed. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/husband-just-diagnosed/#post-119249 Mon, 03 Nov 2014 01:27:49 +0000 Thank you for the replies…we have had a good weekend….managed a meal out for our daughters birthday on Friday and today a tea party and baby shower at their house.  My husband is being so brave and calm and I am fussing a lot less and taking my lead from him.  We will get through this.

]]> 274bf6c7f6ba31481d12a1b516253f5d adelaide56 replied to the topic Husband just diagnosed. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/husband-just-diagnosed/#post-119157 Wed, 29 Oct 2014 11:15:19 +0000 thank you so much for this….you are right, so similar to my husbands story.  He is a young 61 year old and I know we will get through…like you say the treatments are getting better all the time.

It was good to hear of such  a positive outcome for you…you have really helped.

]]> 9764353997fa0d0baf2da0e4fb7002fa adelaide56 changed their profile picture https://forum.myeloma.org.uk/activity/p/34706/ Wed, 29 Oct 2014 09:42:42 +0000 0 cfc19e5fd2c4710474a80f3278161bbd adelaide56 started the topic Husband just diagnosed. in the forum Newcomers http://www.myeloma.org.uk/forums/topic/husband-just-diagnosed/ Wed, 29 Oct 2014 09:40:44 +0000 Hi

2 weeks ago today we were told that my husband of 35 years has myeloma.

He had been feeling tired for a while and the doctor decided to do his annual blood tests a month early.  These showed up anaemia and liver problems and we were told to go straight to the hospital.

The following day after lots of tests including a bone marrow biopsy, we…[Read more]

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