[avantrompParticipant]

Val
Good luck with your further treatment. I am shortly starting with daratumumab and am looking forward to seeing the result. We are lucky that there are so many different treatments available now.
Annette

[avantrompParticipant]

Hallo Val
I was put onto lenalidomide, when diagnosed in 2010, at 7.5mg, on the same regime as you. My original dose of 10mg. was too much for me. I then continued with the same dose as maintenance for the next 7 years until it was no longer effective. My pp never went below .5gr.l/tr. My only problem with lenalidomide was persistent diarrhoea. Get back to me if you have any questions.
Annette

[avantrompParticipant]

Hallo Chris
Myeloma treatments that I have had always affected my HB levels. I have several times had to have a blood transfusion because of this. Now however I give myself an epo(Binocrit) injection every few weeks to keep my red blood cells at an acceptable level. Perhaps you remember, epo is what racing cyclists were accused of using to increase their oxygen levels.
Annette

[avantrompParticipant]

I get most of my hard info from Myeloma Beacon. They regularly issue reports of the latest research findings. Also, ASH (American Society of Haematologists) conference will shortly take place, attended by thousands of haematologists from all over the world. Myeloma Beacon gives heaps of information on papers etc. presented at the conference.
Annette

[avantrompParticipant]

Hallo All
I’m a regular follower but rarely contribute because I live in the Netherlands and treatment protocols are different. I was diagnosed in 2010, considered too old for sct, and received Revlimid, also as maintenance, for the next 7 years.My numbers started rising and I went onto Carfilzomib. The effect was remarkable. After 3 months the m-protein went down from around 26 g/l to 3 g/l.but unfortunately my legs and feet swelled up so severely that I had to stop. I have had no treatment for 2 months so I expected my numbers to have risen but at my blood test last week they had again gone done, to 1 g/l. Next appointment in 3 months-it’s great to be free of treatment for a while.
I hope you will be able to take advantage of Carflzomib before too long.

[avantrompParticipant]

Hallo Paul
Sorry to hear about your family’s confrontation with MM. However one thing struck me immediately. It is great to have a GP who has a mind open to the possibility of MM. There are far too many patients who are suffering permanently from bone pain that could have been avoided with earlier diagnosis. Better safe than sorry. I was diagnosed as a result of bone pain but fortunately this disappeared (following bisphosphonate treatment).
Annette

[avantrompParticipant]

Hallo Richard
We seem to have reached the same point. I have lived in Holland for over 30 years. Revlimid has worked brilliantly for me, for over 7 years, but my m-proteins are now inexorably rising. My consultant stopped the Revlimid 2 months ago and on Thursday I am to hear the result of his consultation with colleagues. Stopping the Revlimid had an instant positive effect on my blood figures but I haven’t yet noticed much difference in my intestines.
I’ll be very interested to see what treatment you end up with.
I have never had dexamethasone but hear fearsome stories about it. Ah well.
Annette

[avantrompParticipant]

Hallo Ian
I had better tell you more about my dose. I went onto a research study and under its protocol I first received 10mg. Revlimid. I couldn’t tolerate it. My upper body became covered in blotches and all skin peeled. I was like a walking snowstorm. My consultant then reduced the dose to 7.5mg. He also said that my initial response was a good indicator of its effectiveness. He was certainly proved right. I wish you all the best. Let us know how you get on.
Annette

[avantrompParticipant]

Hallo Ian
Go into it with confidence. I was diagnosed almost 8 years ago aged 66 and was told that a sct was inappropriate for me. I went straight onto Revlimid 7.5mg. and in all that time I have been able to enjoy life to the full. I was never in recession but my m-protein remained around .5gr./L. The numbers are now very slowly starting to rise so I’ll soon have to go onto another regime. I’ll be happy to answer any questions you may have.
Annette

[avantrompParticipant]

Hallo Sue
I have been taking Revlimid for over 7 years and the only significant side effect for me has been diarrhoea. I cope with this very well with loperamide and Questran as needed. My Revlimid dose is very low, only 7.5mg., 3 weeks on and 1 week off. I have not had an sct and never reached remission. The possibility of a secondary cancer was never really an issue for me because I had no choice. My consultant advised me to watch out for skin cancer but said that any new cancer would probably be relatively minor. I understand that a secondary cancer is more likely if the Revlimid is taken in conjunction with Alkeran(Melphalan) and I believe this no longer happens.
My red and white blood cells are slightly depressed but I live completely normally, doing all the things I did before the MM.
There are several interesting threads on Myeloma Beacon relating to the effectiveness of Revlimid maintenance after sct, for example
http://www.myelomabeacon.com/forum/revlimid-maintenance-meta-analysis-t7365.html
Good luck with your decision
Annette
All the best with your decision

[avantrompParticipant]

Hello Steve
You might like to read this thread that I came across on Myeloma Beacon.
http://www.myelomabeacon.com/forum/risk-of-progression-with-mgus-new-czech-study-t8714.html
All the best to you. Try not to let the diagnosis get you down. Even if,one day, it does become MM, research is advancing at a prodigious rate.
Annette

[avantrompParticipant]

Hallo Lynne
I didn’t want to go into a long story about my history. (I don’t have a problem with talking about it but it takes up so much space.} I live in the Netherlands and when I was diagnosed I entered a trial (Hovon 87) aimed at testing the difference between thalidomide and lenalidomide (Revlimid) for newly diagnosed patients not eligible for sct. The trial is long over and a report published. I am still sitting in the trial because I am still within its parameters. However the result of the trial showed that there is no difference in outcome whether you take thalidomide or Revlimid but a significant less chance of neuropathic side effects with Revlimid. I have written the above from memory so I hope that what I have said is all correct.
Contact me if there is anything else you would like to know.
Annette

[avantrompParticipant]

Hallo Lynne
I was diagnosed over 7 years ago. I had no sct and was put onto Revlimid and never achieved remission. My MM markers are still very low and I have had no other treatment than Revlimid. Try to be positive about your prospects because, as Louis says, everyone responds differently to treatment.
Annette

[avantrompParticipant]

Hallo Millie
I was diagnosed 1 Feb. 2010 and was put onto Revlimid (7.5mg.) that I have been taking since then.The first 3 years my m-protein (I think it is still called paraprotein in Britain) slowly went down until it reached a plateau of around .5gr/l. It then remained at this level until about 6 months ago when it started rising minimally, about .1gr./l per month.My consultant is happy for me to stay on this regime until at least 2 consecutive monthly increases of 5gr./l.
I was diagnosed at age 66 and normal cut-off age for sct was 65. With the benefit of hindsight I am very pleased that I had no sct. I am able to live a normal life without having had to suffer the long period of recovery necessitated by an sct.
If there is anything else you would like to know, just ask.
Annette

[avantrompParticipant]

Hallo
I spotted this mail on a thread in Myeloma Beacon. “Re: Fever after Zometa infusion – is it serious?”
You might find it helpful.
Annette

Re: Fever after Zometa infusion – is it serious?
by chadsnow on Thu Sep 08, 2016 4:56 am

Too late to help the original poster, but anyone who reads this later may be helped by this advice. I had a horrible reaction to the first dose of Zometa – ended up in the hospital for two days with high fever and severe bone pain. My chemo nurse recommended I take a Motrin (ibuprofen) and a Claritin (loratadine) the day before, the day of, and the day after my Zometa infusion, and it has worked like a charm the last 4 times. Apparently, something in the antihistamine in Claritin reduces the side effects of the Zometa.

Talk to your doctor about it. It worked wonders for me.

chadsnow
Name: Chad Snow
Who do you know with myeloma?: myself
When were you/they diagnosed?: May 19, 2016
Age at diagnosis: 45

[Author]

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