[tmcintyreParticipant]

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

[tmcintyreParticipant]

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 can have the SCT after this his consultant said the long term plan is to keep him on Revlimid.

Other people will tell you about their experiences. Hopefully you’ll get a plan put in place for you soon.

[tmcintyreParticipant]

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 to all but you are right, it is the procedure to give the best remission.

We have a couple of specialist nurses as part of the team along with an emergency phone number.  Have you been given any information about them?  They might be good to have a chat with if you can,

best wishes

Teresa

[tmcintyreParticipant]

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 a similar situation.

SCT usually seems to follow after 5 or 6 cycles depending on blood and bone marrow results. If the next results are favourable my husband will have a day of prep, then a week later one or two sessions of stem cell harvesting. Then another couple of weeks later will be the SCT which involves a 3 week stay in hospital followed by a few months recovery. I won’t go into detail about drugs and procedures as I think you have a lot to take in already.

best wishes

Teresa

 

 

 

[tmcintyreParticipant]

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 showing excellent results so he was booked for SCT in June. However, his bone marrow still had 50% Myeloma cells which was a surprise to everyone so he is just finishing his second cycle of Cyclophosphamide and Dex (no Thalidomide) prior to having another bone marrow biopsy to determine if he can go ahead with SCT.

The breathlessness is very debilitating, if it wasn’t for that he could carry on with life as normal because he’s had few other side effects.  I was beginning to wonder if its due to lack of activity because he had severe constipation for nearly two months pre diagnosis and was in agony and could barely move so was off work and then was signed off for another three months at the start of Myeloma treatment.  He has never been a very active man, not one to potter doing household/gardening jobs and when he was advised to avoid heavy lifting because of Ostopenia he basically became attached to his armchair.  Thankfully last night he decided he didn’t want to become an invalid and will begin some gentle exercise to try to get some strength back in his arms and legs.  I’m hoping this will improve his lung function too.

Have they put the pins and needles in your husbands hands down to Neuropathy?

Teresa

 

[tmcintyreParticipant]

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 inhalers by the lung consultant which haven’t made any difference and will be having anther lung function test this month to check for any changes. The doctors don’t seem to know what is causing the problem but don’t seem too concerned, they just want to ensure he is fit enough for his SCT.

I hope that both of your husbands begin to feel more comfortable as time goes on.

Teresa

 

[tmcintyreParticipant]

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 if that has contributed to it.  We will discuss with his consultant next week. Over the last 6 months he has been given antibiotics three times, once involving a stay in hospital. He also had just a 7 day course of Allopurinol at the start of his first cycle.  We are keen to stick with the Zolendronic Acid – I think there is another drug which you can try if necessary – as the benefits make it worthwhile.

We have found the whole team to be ready to listen to any problems and they have been keen to alleviate any adverse effects. Inbetween the clinic appointments we have two specialist nurses to call of if necessary.

I hope your other half gets some relief with some adjustments to his treatment.

 

[tmcintyreParticipant]

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.

 

[tmcintyreParticipant]

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 replacement so she will get that started next week along with getting back on Zolandronic Acid.

My husband is very low, he has been comfort eating (using the steroids as an excuse) and has put on lots of weight which is affecting his mobility so I feel he is presenting as more disabled than he needs to be. Looking at other patients in the hospital he is the only one so overweight. When he was first diagnosed he was warned not to do any heavy lifting because of his thin bones so he has done nothing around the house/garden and wouldn’t even carry any shopping bags when we did grocery shopping. He has had us fetching and carrying for him but I am trying to gently ease him back into doing things for himself.

I’m sorry to be such a moaning minnie but I feel that we’ve been in limbo for such a long time and its a strain trying to keep his spirits up and keep on top of his everything.

 

[tmcintyreParticipant]

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

[tmcintyreParticipant]

Hi Dawn,

 

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

Teresa

[tmcintyreParticipant]

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 results were going in the right direction. My husband was quite upset and felt that it was the beginning of the end. It doesn’t help that his brother died from the same condition although there were other factors in his case which I mentioned on a different thread.

Anyway, I’ve told him about your experience and he seems calmer and I am more optimistic that the different treatment will have the desired effect. I emailed the nurses as I would like my husband to be able to read their reply rather than me trying to relay the information to him.

Its not too long to wait to see the consultant again so this time next week we will have a plan,

Teresa

[tmcintyreParticipant]

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 returned. As I mentioned before w,hen he reported Neuropathy which was waking him up every night they again stopped Thalidomide and reduced the Velcade dosage. He now has Amitriptyline which has virtually eliminated the pain.

Its good that you’re keeping a diary and I’m sure your consultant will adjust your medication ro ease your discomfort

best wishes

Teresa

 

• This reply was modified 7 years, 6 months ago by  tmcintyre.

[tmcintyreParticipant]

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 night and is coming home later today with more tablets.

He hasn’t had much energy during the last couple of months but I think we may have turned a corner.  Dave has always been an  “I’ll do it tomorrow” person and I have spent the last 30 years trying to change that. I think he is finally beginning to realise that we have to make the most of each day.

[tmcintyreParticipant]

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 come from the research side and her ears pricked up when she heard. Perhaps the hospital will investigate that further down the line.

I agree, we think our GP was very alert especially as the lab reported that Dave’s protein levels were high but just within the normal range. She must have noticed an increase between blood tests.  Considering she had never met Dave before I am very grateful to her.

Dave’s temperature has gone down but his bloods are still showing an infection so they are keeping him in hospital.  He couldn’t start his SCT priming today sadly.

Thanks for thinking of me. At least with Dave being cared for in hospital I am managing to get a few good nights sleep!

 

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