[AV8RParticipant]

I wonder if I might again profit from the experience of others on the forum?

I was diagnosed with MM in October 2011 with a PP count of 56 and joined the Myeloma XI trial receiving RCD then VCD before stem cell transplant in July 2012. Before transplant my PP had only got as low as 18. My initial response to treatment seemed rather poor with PP rising to 21 after transplant. Since then, however, it has fallen to a plateau of typically 5.

My consultant now says I’ve achieved very good partial remission and I feel fine. I’ve intentionally lost weight to improve my blood pressure. I remain on Revlimid maintenance therapy with the only side effect of alternating constipation and runny tummy – hardly a problem. I have back ache but it is activity related so easily managed with paracetamol. So why might I be writing this post? Please don’t think I’m complaining. The care I’ve had at Bristol has been exemplary and I recognise where I would have been without such treatment.

It’s now 18 months since transplant and little by little I’m learning to think longer term. When I first started it was difficult to believe that it would work and so I thought very short term. Now things are very much better. My wife and I have had several holidays since transplant. Dare I look to the future? Most patients I read about only get a lengthy drug-free period when in full remission. Are there patients out there who like me have a partial response but who have had a lengthy time before further treatment was required?

Keep well everyone

Stephen

[VickiParticipant]

Hi Stephen

Great to hear from you. I was only thinking of you the other day as you were so supportive to Colin and I. I can’t really help with the questions you pose but just wanted to wish you well.

Looking into the future is scary but it’s also good to plan, keep positive and enjoy the moment….

Look after yourself and enjoy those holidays.

Colin is still in remission, we have the hospital on the 5feb. If all is ok we are planning our first holiday. I almost dare not think we might be going on holiday! We might go to Mauritius but am scared to even think its possible!

All the best

Vicki and Colin x

[janwParticipant]

Hi Stephen

After 4 cycles of CDT and a SCT, my light chains reduced from 2,200 to just below 20. It’s been almost four years next month since I was diagnosed in March 2010 with myeloma and over these years, my light chains have behaved unpredictably sometimes increasing, sometimes staying at a plateau for months, sometimes decreasing, but now they have finally reached the consultant’s target of 1000 which is the trigger for further investigations and the start of my second round of treatment depending on bone marrow results.

Therefore, my answer to you is yes you can look forward to a lengthy period of remission with your PP at a plateau of 5. It just depends on when and at what rate your PP levels start to rise. Each patient responds to treatment so differently, therefore it’s so difficult to predict length of remission periods. Just carry on enjoying your period of remission and long may it continue.

Regards
Jan W x

[eveParticipant]

Hi Stephen

Well I can only tell you about Slim,after SCT and 100 days BMB,he was told he was in full remission and had 0.00 Myeloma cells in his body !!! It came back before 6 months was out!!!

As you know different people different results!!!

So make the most of your life,lock the Myeloma away,get on with living,Eve

Forgot David ,only had partial response I think .

• This reply was modified 10 years, 9 months ago by  eve.

[ozzyParticipant]

Hi Stephen
No-one has the same response to treatment as others so I just go with the flow. My pps went up to 49 when I originally had CRT and then when I had my SCT and my pps stayed at 5 and never zero. That lasted 18 months and then went on velcade last Jan 2013 3 cycles and my pp went down to 7 from 48. That lasted 6 months before rising again to 50. I have just started CRD so who knows!!! Have you managed to go abroad on your rev maintenance???If yes how did you manage with the travel insurance? They have mentioned that I too will be on maintenance when I plateau and bad news off you then is that the Clexane continues I am bruised already after 10 injections!!!
Good health
Ozzy

[eveParticipant]

Hi Ozzy

Just a quick one about Claxane ,There is a pill I cannot remember the name,Slim used to be on it,and I think Andy is on it,does the same Job,so might be worth asking consultant about it,Eve

• This reply was modified 10 years, 9 months ago by  eve.

[AV8RParticipant]

Many thanks for your comments everyone.

Having taken some time out from the forum, I’m reminded that I’m not alone with this disease. Holidays are certainly possible although insurance can be an issue. Companies that claim to be “cancer friendly” don’t seem to be when you contact them. When I was first diagnosed, the consultant agreed that I could have a week in Cyprus before starting treatment. I was quoted £770 for the two of us for one week! Needless to say we declined that. We’re currently insured through Global with an online application process. My reading of the policy is that my myeloma would not be covered but other risks would be. This suits us but might not be appropriate for others.

When we travel, my Clexane goes in the hold so avoiding problems with security. It it were to go missing, I could go on aspirin for a while. My Revlimid, however, travels in the cabin. I had some problems with bruising from Clexane but now seem to have it sorted. I inject at least 10 minutes before getting out of bed. Having put the needle in, I relax the pressure on the flesh a little before slowly pressing the plunger. I also received advice, which seems correct, to avoid any tough skin and thus to not use alcohol wipes.

Best wishes to everyone and keep well

Stephen

[andygParticipant]

Hi Ozzy.
I was on Revlimid CRD for 22 cycles and other treatments before that CDT etc I was on tinzaparin and I injected myself over 700 hundred times. I’m now on a pill as Eve says it called Rivaroxaban and I take one a day so I’m no longer looking like a dart board. I go abroad a couple of times a year and haven’t paid more than a hundred pounds for a weeks cover for me and my wife and it covers me for my myeloma and Stephs diabetes. When I was on tinzaparin I took the needles in my hand luggage so not to lose then and I had a letter from my consultant for customs not that I ever needed it I just told them I had them and they were happy with that. I’ve been on chemo constantly since Oct 2011 mainly CRD and have had no trouble traveling abroad though I do check with my consultant that it’s safe to travel first.

Hi Stephen.
You are taking a big risk in traveling without cover for your myeloma in my opinion. Just about everything that you could fall ill with could be linked to your myeloma and you could end up with a massive medical and repatriation bill. Any illness will be blamed by the insurance company as being due to your low immunity due to myeloma. Broken bones also will be blamed on myeloma too. Insurance companies are experts at avoiding paying out for claims. Our last trip to Greece in September cost me and my wife £86 for the week as I said above that covered my myeloma and my wife’s diabetes. We had been quoted in May for £870 for a week in Greece but got that down to £95 after a couple of hours on the phone ringing around.

Every day is a gift
Enjoy each and everyone of them

Andy

[PerkymiteParticipant]

Hi Andy, My Doctor wanted me to go on to Rivaroxaban but the consultant said no for some reason. So I am on the old clexane, I am going to take it up with him on the 21st Feb, my next consultation. 700 injections Wow.

I think the trick with Clexane is to keep the needle still whilst injecting and inject slowly but steadily. Do not wipe the area of injection just leave it alone. I inject in the tummy, oh and do not inject on the belt line of your trousers. The only bruise I have is the one made by the nurse!

And another real big Wow Andy, in fact a round of applause is in order I think, for your insurance quote of £86 for YOU and YOUR wife one week in Greece unheard off I think, Mind you it does depend on so much and the word REMISSION, if you can use it, is a very big factor in the whole thing. I think your advice to Stephen is spot on.

Sorry I have been a bit tardy in my post All, I have started re-visiting my Family Tree which I am putting on a rather complex program called Family Tree Maker, well it is complex to me if you do it correctly, and that is taking a lot of my time up.

Kindest regards to all – vasbyte

David

[CarolsymonsParticipant]

Hi any
Which company do you recommend for travel insurance?

Carol

[jmsmythParticipant]

Hi Carol

Before Frank had SCT our travel insurance was through Columbus. They were good. After transplant we got a yearly policy with All Clear. Excellent price although it did not include USA

Jean

[tonyfParticipant]

All Clear is part of AXA.
We have a policy via a bank account with the Coop bank. It costs £12.50 a month, as well as travel we have gadget/ mobile phone insurance and car breakdown. Oh and airport VIP lounge access. The travel policy allows unlimited travel, including USA.
I have kept AXA informed of my health situation and pay no access charges, it will be reviewed in June 2014, the anniversary of the policy, we have had the policy in place for 4 years, so was pre myeloma.
I was diagnosed with myeloma, two years ago, just two days before we were due to fly to Africa, AXA paid the full amount, with no argument.
Guess we have been lucky!
Regards
Tony F

[andygParticipant]

Hi Carol.
We were insured through “now I can travel” they have a web site but we deal with them over the phone. Be prepared for a long call because they ask lots of questions.
Web site is http://www.nowicantravel.co.uk the phone number is on there. Good look 😉

Every day is a gift

Andy xx

[andygParticipant]

Hi David.
I can’t use the word remission as I’ve never achieved it. The best I can say is my disease is stable and that seems to work.
I’m busy transferring all my music and DVDs onto my new self assembled computer and that’s taking up a lot of my time. I did think it wouldn’t take long when I started out how wrong was I!

Every days a gift.
And a day nearer the next holiday

Andy

[PerkymiteParticipant]

Hi Andy, I built my own computer for my 60 birthday it was a great machine and served me well for many years then I got sold some duff RAM and it burnt up the motherboard. My children bought me a new laptop a Dell Studio 1745. It is a good machine and I have used that ever since. Last week I put in 8 Meg Ram (was 4) and a new SSD drive and just for good luck a new fan. The SSD really makes a difference.

Once I have done the Family tree I intend to digitise all my Photographs, 50 years of photographs – a daunting task.

Kindest regards – vasbyte

David

[Author]

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