[nickymParticipant]

Hi Jan.

Thanks for your comments. My husband is only on Aciclovir ( hope I have spelling is correct) to deter shingles. He has in the past had the ones you mention, however, tolerated them well. The rash was definitely Pomalidamide. He has now been on the reduced dose for just over 2 weeks and no sign of a rash. The Heamatologist  is going to increase it to 2 mg. next cycle alongside still taking antihistamines. It sounds as if your rash is an allergic reaction to the antibiotics. I do wonder sometimes about the amount of antibiotics that are prescribed for my Husband in a prophylactic role and the issue re bugs becoming resistant to them. Over the years he’s had loads due to infections not only orally but intravenously as well.

There is no way of telling if the pomalidamide is working yet as not had paraprotiens levels etcetera checked. Mind you the blood results from the 6 months of bendamustine suggested that it had reduced the myeloma activity significantly, until a  one marrow biopsy was done. The results showed that there was no change in the bone marrow. This cancer is waiting game like many others once treatment starts, then if successful its the same again isn’t it as eventually it will return. I do hope your treatment goes well and you get good results once they have sorted out your rash/allergy. Take care of yourself and once again thanks for your reply.

All the best

Nicky

[nickymParticipant]

Hi All

Just an update on Husbands treatment. The consultant has prescribed a much lower dose, 1mg instead of the 4 mg daily of pomalidamide. The dose will be increased gradually, but he is going to be monitored on a weekly basis. He has to take anti histamines alongside this and a short burst each week of prednisolone. He hasn’t started as yet as he is awaiting the hospital pharmacy to phone to say the  pomalidamide has been delivered to them and ready for collection. Fingers crossed it works.

[nickymParticipant]

Poor Chris. My husband had a very nasty  rash with rivlamid. He has just started pomalidamide, same reaction. It looks as though they might restart reduce the dose and take an anti histamine. This new rash subsided within 24 hours after stopping pomalidamide (a derivative of rivlamid) anti histamines and steriod cream. Hope it rights itself soon. We will know more next Tuesday.

[nickymParticipant]

Hi.

My husband has had MM for nearly 18 years now. He does get uptight and sometimes has a short fuse especially when on Dexamethazone. I have learnt to rely on my hobby, painting to emerse myself in something else not related to his myeloma/illness. I actually attend a painting group once a week throughout the year. This is me time and we arrange hospital appointments etcetera around this as best we can. My daily ‘me’ time is walking the dog, she listens to me inner thoughts and doesn’t try to change anything or shout back at me! Me time is essential for all carers to recharge those  ‘batteries’ and start afresh each time. My husband is running out of treatment ideas now after having this horrible cancer for so long and we are both worried about the future. I do get fed up and like you say ‘ life is on hold’ but we try to get out and about as much as we can, even it is only out for lunch at the local pub. Please look after yourself as well and big hugs from me.

[nickymParticipant]

Thank you Ellen and Jill. Husbands consultant is on holiday at the moment but back Monday. An appointment has been made for Tuesday to go back and re access treatment. Registrar very helpful and discussed with other Heamotology consultant at hospital, they decided to stop the pomalidamide until he sees his own consultant. She stressed that it was only an interim solution and possibly would go back on it  but a smaller dose. Rash has disappeared now as they got the dermatologist to have a look and they prescribed a steroid cream and diprobase plus a different anti histamine (once a day) and piriton at night. I will update after the appointment on Tuesday.

Can’t help but worry as had so many treatment over the years and last one, bloods said working, bone marrow said no. That was after 6 months of bendamustine and thalidamide. Previously, 5 years ago this treatment worked well and paraprotiens were unrecordable for a long time and it took  over 4 years before more treatment was needed.

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