[avantrompParticipant]

Hi Peter
Do you ever go to The Myeloma Beacon?
http://www.myelomabeacon.com/forum/
The site is linked to a cancer hospital in the U.S. They have a large pool of forum entries covering every imaginable aspect of MM and the mails are all sorted, making it easy to find what you want. You can request the newsletter and peruse the forum without having to register. I receive a lot of information about worldwide research.
http://www.myelomabeacon.com/email-subscription/ (for newsletter)

Annette

[avantrompParticipant]

Hi Peter
I was told that I was too old at 66 to have an sct. I was so taken aback with the diagnosis that I didn’t pursue it. I know now that I could have pushed for it but am extremely pleased in retrospect that I didn’t have one. But that is the problem with MM. You never know how you will respond to a particular drug or treatment. A friend here went onto the same medicine path as I did but it failed for her. Come the day when it is possible to match up genetic profiles to specific drugs!!!
I would love to have a cycle break but am loth to rock the boat.
I am very interested to hear what you and Brian ultimately decide – it’s tough.
Annette

[avantrompParticipant]

Hi Brian
I shall be 73 tomorrow. In my mind I feel much younger. I go shopping on my bike and I play in a large accordion orchestra.
Revlimid capsules come in units of 5mg, 10mg, and 25mg, as far as I know. I started off with 10mg but had such an adverse reaction that I went to 7.5mg, that for me means alternate days of 2x5mg and 1x5mg. I have a spreadsheet that I tick off each day, it’s so easy to get it wrong.
I have great sympathy for MM patients in Britain who are unable to access Revlimid in early treatment. I have lived in the Netherlands for decades and here Revlimid now forms part of initial treatment.
My husband is calling me back to work. We do regular translation work for companies and are on an urgent job.
best wishes
Annette

[avantrompParticipant]

Hallo Brian and Peter
My experience might contribute to your thinking on the subject.
I was diagnosed in Feb. 2010 and put onto Revlimid 7.5mg., 3 weeks on /1 week off. My dose has never changed and
my paraprotein has hovered for years around .5g/dl. I am at a loss to know why it has been so successful for me but long may it last!
Annette

[avantrompParticipant]

Hallo Eric
I have a tip that may help with too loose bowels. I have been taking Revlimid for 6 years and my only real problem was unpredictable diarrhoea. I frequently had to dash to the WC with the fear that I wouldn’t make it. I learnt from an MM blogger that Questran might help so I asked my consultant if he was willing to prescribe it for me. I find it brilliant. It gets rid of the urgency. My consultant has since said that he is suggesting it for other patients with the same problem.
I’ll be interested to know whether it helps you.
Annette

[avantrompParticipant]

Hallo Peter
I was diagnosed in Feb.2010 and at the age of 66 was not considered eligible for sct. I see my arithmetic was a bit off and I have been treated for mm for almost 6 years. I went onto a trial (Hovon 87, in the Netherlands) so that is why I received lenalidomide straight after diagnosis. This is the only medication I have received (apart from the chemo) and although the trial is long over and the results published I continue to be treated under the protocol. Happy to answer if you have any questions.
Annette

[avantrompParticipant]

Hallo Jeffery
My experience might help you to come to a decision. I was put on lenalidomide nearly 7 years ago when it was used as a single agent, not combined with Dex. No sct for me because I was seen as too old at 66. Although mm is detectable via pp in my blood I have been stable for years and my pp has never been lower, at present .5gr/ltr. I take 7.5mg lenalidomide.
Good luck with your difficult decision.
Annette

[avantrompParticipant]

Hi all
I live and am being treated in the Netherlands. It has just been reported here that Celgene, manufacturer of Pomalidomide (and Revlimid), has reached an agreement with Dutch haematologists and 6 major health insurers to provide Pomalidomide on the basis of no-benefit-no-cost. Maybe this is something to campaign for. Revlimid, that I currently take, is standardly prescribed.
I cannot imagine a situation in which Revlimid is not prescribed. It is a life-saver for me.
Annette

[avantrompParticipant]

Hallo Frances
When I was first diagnosed with mm my consultant gave me a paper with guidelines for my dentist. A couple of years ago I had an infection in my jaw and took the precaution of going off the bisphosphonate for three months before the dental treatment. Before you go for treatment I would check that your dentist is aware of the risk of osteonecrosis. I certainly do not want to take any risk of getting it.
Wish you well with your extraction
Annette

[avantrompParticipant]

Hallo Peter
Unbelievable! I would say completely ignore him and put your faith in a haematologist. Everybody responds differently to treatment and also there is a great deal of effective research being carried out. At the age of 66 I was told I was too old for a sct, now over 5 years later, on revlimid maintenance, I have barely detectable myeloma in my bone marrow and feel excellent. I am confident that when/if the myeloma becomes active again there will be a new treatment for me. All the best to you.
Annette

[avantrompParticipant]

Congratulations Richard
It’s tough learning another language in middle age, especially when you have probably only superficially learned French at school. We came to the Netherlands over 30 years ago and I didn’t have too much of a problem because I already spoke fluent German and regularly met mothers and their children outside the school gates. However for my husband, also Richard, it was tough going. For a start the company’s language (Philips) was English and also everyone you come into contact with wants to practise their English. Now he is treasurer for a local club and even dares to write reports.
Keep on learning.
Annette

[avantrompParticipant]

Hallo fm 1960
This morning I read an article in our newspaper and it describes exactly what you are suffering. There is no point in copying it for you because it is in Dutch. Briefly it says:
Year-long suffering from agonising pain in the abdomen, unnecessary operations and investigations, and finally being told it is “between the ears”. This happens to 2,000 Dutch people every year.The solution is simple: numbing injections or possibly cutting of a nerve branch in the abdomen wall. Trouble causer is”Acnes – Anterior Cutaneous Nerve Entrapment Syndrome”. It can occur spontaneously or after an operation and 75% of sufferers are female. A campaign has been started to make doctors more aware of it since they see so few cases and therefore fail to recognise it. A special clinic for this has been set up in the Maxima Medical Centre in Veldhoven where there is outpatient treatment.
Sorry this is so long-winded and might not relate to your problem but it could be the answer.
Best wishes
Annette

[avantrompParticipant]

Hallo All
During the months before my diagnosis my finger nails started turning up at the sides. I asked my GP about it at the time and, after the diagnosis, the consultant. They both said there was no apparent cause but I feel it must have been connected in some way to MM because my nails are now a normal shape. They grow very fast but always split and tear. Ah well, there are plenty of worse problems.
Annette

[avantrompParticipant]

Hallo Janet
Your description matches my experience exactly. My only solution is to keep my nails very short. Are we on the same medication – Revlimid? No problems with my teeth.
Annette

[avantrompParticipant]

Hallo John
I just want to give you a different perspective. I was diagnosed at the beginning of 2010 at age 66. I was told I was too old for a sct and was so overwhelmed by everything that I accepted this. In retrospect I could probably have made a good case for a sct and almost certainly would have succeeded in getting one since I was otherwise in good health. Now I suspect that the right choice was made. I took part in a study in which I received lenalidomide. After an initial dramatic drop of pp level at the beginning, the pp has continued to go down and now seems to have reached a plateau over the last few months of about .5gr/dl. I continue taking 7.5mg lenalidomide (Revlimid) 3 weeks on and 1 week off. Since my diagnosis I have lived normally with no pains. White and red blood cells are low because of the lenalidomide but that is not really a problem. It is tremendously difficult to decide what is best for yourself. Whatever you decide you have to live with it, no “what ifs”.
info: I live in the Netherlands and the study in which I am still enrolled is an international one – Hovon 85. Under the protocol I must be seen by the consultant every 4 weeks, with a blood test. No need to feel guilty about the costs to the health service because all are covered by the manufacturer and it is great to constantly have up-to-date blood results.
Annette

[Author]

Posts