Yes. my husband has his SCT in January.  The staff kept him informed of procedures and how he would feel every step of the way. For example, they told him when he might develop a sore throat for which they supply mouth washes as a prevention but can help if you do suffer. Any nausea is kept at bay and they warned him when he would begin…[Read more]

My husband is being treated in Southampton.  Although VTD got the levels of PP’s & Light chains down to undetectable in his blood, his Myeloma was still showing in his bone marrow.  He then had two cycles of Cyclophosphamide whilst his consultant planned the next stage. He applied for (and got) Ixazomib, Revlimid and Dex, not on a t…[Read more]

I’m glad your husband is well, treatment does take some tweaking before you get the right balance. Seems as though the Ixazomib is the right one for  us.

Teresa

Good to hear you’ve got through SCT but sorry to hear you have the ostonecrosis.  My husband is 11 weeks post transplant, having bone marrow biopsy next month. The plan is for him to continue with IRD as maintenance to prolong remission, hopefully dropping the dex after 3 months.  He had flu during SCT and another infection a couple of w…[Read more]

Good to meet you albeit in these circumstances. I hope your dad does well on VTD. The one tip I can give you at this stage is for dad to report if something is worrying him eg if he feels sick on the treatment or has diarrhoea or tingling in his hands and feet or a rash.  There is usually something to help with this to make life better.  A…[Read more]

We are in Southampton.  Are you a member of the Myeloma Support Group on Facebook. There has been a discussion about this recently,

best wishes

Teresa

My husband was diagnosed in December last year. After 5 cycles of Velcade his blood results were very good and he had dates for his SCT. However, his consultant was very surprised to find his bone marrow biopsy was showing myeloma cells and he said Dave was a non secretor.  He then had two cycles of Cyclophophamide and now on fourth cycle of…[Read more]

Thanks for the update, I hope Carfilzomib gets to work for your husband.  We are waiting for results from my husbands bone marrow biopsy to see what the next step is – SCT or some kind of PACE treatment has just been mentioned.  My husbands bloods are completely clear, its just the bone marrow showing disease now.  He is on Ninlaro an…[Read more]

Have you managed to get a second opinion?

Teresa

thanks

Teresa

I can understand how low you must be feeling to be back into the routine of hospital and treatment.  We’ve been on this journey since December and I sometimes wonder if that’s our life forever – my husband hasn’t got to SCT yet so not experienced a break from it all.  Despite trying to get on with life its hard when he is always tired and g…[Read more]

We’ll see how he gets on with his 3 cycles of ixazomib. His consultant didn’t say he was on a trial although as you say, that drug is on trial, he just said he’d secured funding for it.  We’ll know more as time goes on.

I hope your dad keeps well,

Teresa

We’ll see how he gets on with his 3 cycles of <span style=”background-color: #fbfbfb; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”> ixazomib. His consultant didn’t say he was on a trial although as you say, that drug is on trial, he just said he’d secured funding for it.  …[Read more]

My husband was diagnosed in December and has tried two different combinations of drugs which have not reduced the cells in his bone marrow. He is just finishing his first cycle of ixazomid which he is taking with Revlimid and Dexamethasone. He will have 3 cycles and has been told he is still aiming for SCT but has been warned he will be on…[Read more]

Can you tell us which drug it is?

best wishes

Teresa

Velcade seems to be the popular choice for induction at the moment, no doubt something new will come along in the future.  I suppose we have to accept that not everybody will get good results from it but I kind of wish the consultant hadn’t specified a time frame for everything because its really upsetting when it doesn’t pan out that…[Read more]

In our experience once the diagnosis has been made things happened very quickly.  My husband sees his consultant every 4 weeks to talk about his current treatment, with bloods taken on the same day. If he has any problems eg, pain in hands and feet, the dosage is adjusted.

When was your diagnosis and what treatment are you on?

best wishes

Teresa

Hi Mike – its shocking that free availability of this drug is not universal.  Its a shame that you have to battle to get access to it.  Let us know how you get on,

best wishes

Teresa

Thank you very much for your advice.  Dave was up very late this morning so I was able to give him the Linlaro after reading Adrian’s message, before he got out of bed. By the time he got up and showered he didn’t have to wait long before he could eat and take the Dex. He hasn’t been sick to day but if he is we will do the same as your…[Read more]

We still don’t have the results of the bone marrow biopsy, doctor explained it had to be sent away and a dye needed to be added etc. We go back in two weeks to talk about how Dave is getting on with the new meds. I think Dave has gas and air, I’m glad that it made it better for you. He said he’s not prepared to have any more biopsys…[Read more]

My husband is starting the new combination of drugs today. In your experience is there a best time of day to take the Ninlaro? I know the Dex is best in the morning and Revlimid at night

Teresa

I think Dr J is very keen to make sure his patients get the best chance at remission so although his treatment plans seems to be longer than other hospitals I have faith that the outcome will last longer.

Let us know when you get your bone marrow results. Dave gets the second part of the results on Tuesday

Teresa

I think Dr J is very keen to make sure his patients get the best chance at remission so although his treatment plans seems to be longer than other hospitals I have faith that the outcome will last longer.

Let us know when you get your bone marrow results. Dave gets the second part if the results on Tuesday
<p style=”text-align:…[Read more]

Good to hear from you! Yes we see Dr J. How have the last three months been for you? When were you diagnosed and what’s the next step for you?

Teresa

It seems so tough trying to get the treatment you need, good to have Myeloma UK on your side.

I don’t know how or why the consultant has gone down this route. He didn’t say it would be a trial, just that he was fortunate to obtain funding, perhaps because its only for 3 months or because my husband’s brother died from MM? My husband had 5…[Read more]

How long have you been taking Rev/Dex?   Have you had SCT and now relapsed?  My husband is still on initial treatment, his SCT has been delayed twice,

regards

Teresa

Thanks for your reply. I’m glad to learn that your husbands cough has eased and that he is getting good results from the treatment.

We saw a lung cancer consultant today who my husband went to last year for tests due to a persistant cough and who is taking a special interest in my husband although he has definitely ruled out lung cancer.…[Read more]

Teresa

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

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]

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]

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]

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]

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]

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 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 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