adelaide56

  • adelaide56 changed their profile picture 3 years, 10 months ago

  • 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!

  • 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]

  • 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]

  • adelaide56 replied to the topic Here we go again…. in the forum Carers 4 years, 6 months ago

    Oh Maureen,  I am so sorry to hear this.  Sending you and your husband our very warm wishes.

    it all seems so unfair.  x

  • adelaide56 replied to the topic Here we go again…. in the forum Carers 4 years, 6 months ago

    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]

  • adelaide56 replied to the topic Here we go again…. in the forum Carers 4 years, 7 months ago

    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

  • 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]

  • 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]

  • adelaide56 changed their profile picture 4 years, 7 months ago

  • adelaide56 replied to the topic Paraprotein levels? in the forum Carers 5 years, 10 months ago

    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]

  • 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]

  • 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]

  • adelaide56 replied to the topic Good news! in the forum Carers 6 years, 7 months ago

    Thanks Annlynn and Maureen,

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

    xxx

  • adelaide56 started the topic Good news! in the forum Carers 6 years, 8 months ago

    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]

  • 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

  • adelaide56 replied to the topic After the transplant… in the forum Carers 7 years ago

    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]

  • adelaide56 started the topic After the transplant… in the forum Carers 7 years ago

    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]

  • adelaide56 replied to the topic Feeling anxious. in the forum Carers 7 years, 1 month ago

    Very true!  Thanks

  • adelaide56 replied to the topic Feeling anxious. in the forum Carers 7 years, 1 month ago

    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]

  • Load More