Hi Ann,

How is your husband getting on?  My husband is starting Revlimid, Ninlaro and dex next week, for 3 cycles.  My husband is still coughing – I hope it doesn’t get any worse on this combination!

Teresa

Hello,

My husbands bone marrow showed 50% Myeloma cells after 5 cycles of VTD (although he dropped the Thalidomide due to Neuropathy after 3 cycles).  He has just completed 2 cycles of Cyclophosamide + Dex and the latest biopsy is still showing abnormal cells.  The plan now is 3 cycles of Revlimid, Dex and a new drug called ixazomib. Even if he c…[Read more]

Hi Julia,

Very early days for you. Our consultant mentioned SCT at the first appointment but didn’t want to expand on it until we were further down the line when he printed off the information and advised us to read it before the next appointment, we see him every 4 weeks to discuss results and plan the next cycle. I don’t know if SCT is offered…[Read more]

Hello Ann,

My husband had a second bone marrow biopsy in April with the third due in a few weeks..  Most people talk about light chain and Paraprotein levels in the blood and they were showing as a “trace” so when we were told about the Myeloma cells in the bone marrow being at 50% we were taken aback and haven’t been able to find anyone else in…[Read more]

Hi,

Thanks for your reply. My husband was diagnosed in December. He developed a drug rash after the first cycle so everything was stopped apart from Velcade and Dex. Thalidomide came back in cycle three but then when the Neuropathy began it was again stopped and the dosage of Velcade was reduced.  He had five cycles in all and his bloods were…[Read more]

Hello,

I have been reading your thread and I was interested to see that the Thalidomide might be causing your husbands breathlessness?  My husband had a few months of Thalidomide but it was stopped when he developed Neuropathy. However, he has been troubled by a phlegmy cough and breathlessness all through his treatment. He has been given…[Read more]

Hi Sab’s

My husband has had  Zolendronic Acid 5 times, the first 4 times he had no reaction at all.  This time he has been troubled by symptoms similar to a summer cold.  He has coughed persistently since treatment started but now has nasal congestion too.  As he recently had his first Pentamidine Nebulizer  and a change of chemo we don’t know…[Read more]

I was interested to read about your husbands cough.  My husband has been coughing for nearly 6 months, since he started his treatment.  Apart from a Lower Respiratory Tract Infection a couple of weeks ago there has been no explanation for it.  He was referred to the Lung Consultant who has given him inhalers which so far have not had any effect.

We saw a member of the team yesterday who explained that the bone marrow result was not as low as the consultant would like so my husband is having to cycles of Cyclophosamide and Dex followed by another bone marrow biopsy.

I reminded her that they had stopped Co-Trimoxal after the very first cycle because of a drug rash but had never started the…[Read more]

Hi Annmarie, thanks for your reply, I hope you are well.

Hi Dawn, thanks. I think my husband will be starting on that, we’ll know when he sees the consultant tomorrow.  His last blood tests showed just a trace of paraproteins after VTD but his bone marrow is showing 50% myeloma (plasma) cells.  I hope you get some relief from the new combination.

Teresa

Hi Dawn,

Can you tell me what VCD is please.  Presume Velcade and Dex but whats the C?

Teresa

Hi Jan,

Thank you very much for replying.  I think what was confusing us was the fact that bloods were showing such good results but the bone marrow figure seemed quite high. I have been reading through the booklets from Myeloma UK to get a better understanding of everything. So far we have basically just gone with the flow as long as the…[Read more]

Hi Dawn,

My husband had the rash at the end of his first cycle so they stopped everything except Velcade. The rash went within in a week.  They reintroduced Thalidomide for the 3rd cycle and Aciclovir during the 4th.  Most of the nurses thought it was Co-Trimoxazole which was the culprit and he hasn’t gone back on that and the rash hasn’t r…[Read more]

Hi Dawn,

My husband had the rash at the end of his first cycle so they stopped everything except Velcade. The rash went within in a week.  They reintroduced Thalidomide for the 3rd cycle and Aciclovir during the 4th.  Most of the nurses thought it was Co-Trimoxazole which was the culprit and he hasn’t gone back on that and the rash hasn’t r…[Read more]

Hi Louis, we know C7 quite well.   Dave has spent the last few days in Acute Oncology since I phoned the emergency number on Saturday night. Lovely staff in there too.  We finally think that they have discovered why he’s been coughing for the last few months – an upper respiratory infection.  He’s been on high dose antibiotics since Saturday ni…[Read more]

Annlynn, thanks for getting back to me, its a great help to learn how others cope with it.

Tony, good to hear from you.  Our consultant was interested to know that Dave’s brother also had Myeloma although he initially said it didn’t run in families. The literature from Myeloma UK indicates that it might. One of our specialist nurses has just…[Read more]

Thanks Kevin

Yes, we were told it is very treatable.  Thank you very much for telling me how its been for you and its reassuring to know you are still positive. At the moment we feel like there’s no end to the treatment but I can see there will come a time when he will be in remission.

Teresa

Hi Annlynn,

Thanks so much for your reply. Yes it does help to know that most people have been through it.  How do you feel about going through the treatment again? Can they predict how long your remission will be or is that a silly question, I haven’t liked to ask the consultant.

Teresa