[jennalineParticipant]

Hi, I was diagnosed with light chain myeloma in May 09 I have been fighting it on and off since. I am at present on a maintenance course of Revlamid and cyclophosphamide, plus Dexamethasone. It is my 3rd cycle and am having some pretty horrible side affects. ie cramps in hands feet and back of ribs, hot sweats,hardly any sleep, aching joints(flu joint ache) no energy at all. In fact feeling pretty crap at the moment..

[mhnevillParticipant]

Hi Jenny

Sorry you are feeling so crap at the moment. Sorry I don't have any experience of your particular regime, but wanted to send good wishes. I'm sure that someone will come along with some sensible advice, but do let your medical team know how low you are feeling so they can help.

Very best wishes.

Mavis

[EvaParticipant]

Dear Jenny,
I haven't had Revlimid, but I've had Thalidomide which is a drug that's got similarities with Revlimid. Also I've had dexamethasone and Cyclophosphamide at the same time. Unfortunately, the side effects that you describe sound very plausible, especially once you've reached the third cycle. I'm sorry that you're going through this. Sometimes, it's also a bit difficult to separate out the symptoms of the illness and the treatments.

Your oncologist will probably be trying to balance the ill effects of the treatment with those of the disease. Because myeloma is so individual, no doctor knows how hard they have to push to bring about a good result – that is – either a period where your illness diminishes a lot, or even disappears for a while. If the treatment isn't strong enough it mightn't work; if it's too strong, you might suffer more than is necessary.

Communication with your oncologist might help. By now, or in the next couple of weeks, some results might be coming in. If the meds are working, your light chains might be dropping.The three meds are all working 'together' in ways that even experts don't fully understand. However, if a patient is really suffering and the treatment is doing its job, then some of the dosages are occasionally reduced. For example, because I felt poorly, at one stage I had my cyclophosphamide reduced to 100mg. My dexamethasone has also been very reduced at different times due to symptoms. The treatment still worked for me, but this might not apply to you. Your onclogist is the only person who can calibrate your meds and observe the results. A responsive doctor can be like someone adjusting the sails of a boat according to the wind.

If there can be no changes at the moment, then you might get help with some of the symptoms. My local doctor has prescribed something for the cramps: quinine sulphate 200mg. I take one pill a day and it works for me. Also if you have trouble sleeping( dex tends to do that), a sleeping pill or changing the time of day you take the dex might help. Cyclophosphamide can create nausea. I was on Omeprazole and also on Domperidone to make me feel less sick. Again, any such meds should be approved not just by the local doc but by the myeloma onc as well.

Best of luck,
Eva

[tomParticipant]

Hi Jenny

Well I was on CDT and was pretty much the same, I went on sick in the May (that would have put me nearly finished. My third cycle, so am sure it's same as mine.
Good luck with it and hope it puts you in remission.

Love Tom Onwards and Upwards xxx

[jennalineParticipant]

thanks Mavis for your good wishes, Jenny

[jennalineParticipant]

Thanks Tom for your comments, I am at present on the end of my third cycle and I have been told that I should feel better after the 4th cycle====we will see!!!!!===that's if the drugs don't kill me off 1st!!!lol. This is the 3rd time that I have had LT return so I hope its 3rd time lucky. What I hate most of all is the feeling of isolation that this maintenance course makes you feel. In the past when the LTM has showed its ugly head I have gone to the cancer day centre and had my treatment amongst other patients, so one can chat and discuss revalent issues. With this treatment you pick the cocktail of drugs up from the pharmacy at the hospital and the only time you return is once a month to have your bloods done and to speak hopefully to your oncology doctor===pick up the next cycle and go home again….really unsatisfactory…….Jenny

[jennalineParticipant]

Hi Eva, when I was 1st diagnosed in May 09 I was put on A trial drug, called Bendamustine, because I also have stage 4 kidney failure and it is kinder than some of the other chemo's. I was also given thalidomide, preds and a couple of other medications. It was extremely successful and I had 2 1/2 years remission== when LTM returned I was then given a further cocktail of drugs including Valcade, Cyclophosphomide and Dexamethasone. After my 4th cycle I had a really bad reaction and was sicking up and passing what look like black treacle!!! I was told that as I was now in temporary full remmission to stop all further treatment…..2 months later after a visit to the hosp to check on my bloods I was told that the LTM was returning!!! This is where I am now on the end of my 3rd cycle of the third lot of treatment……I am an extremely strong female and will deal with whatever….. thank you for your concern and imput….Jenny

[tomParticipant]

Hi Jenny

Yes its a lonely road this MM lark,do you have a support group near you?? as am sure that will get you out and about and chat to other MM'ers ? failing that start up your own 😀

I used to go and pick mine (meds) up at the hospital and its correct you dont have time to Chat to folk, was a lot better when I went for my 4 weekly Zometa infusion it gave me time to meet others that had the same and were near as damn it going through same stuff.

Keep strong and rest plenty.

Love Tom "Onwards and Upwards" xx

[BabsParticipant]

Hi Tom,
I currently go to my local hospital every 4 weeks for Zometa and have just started to go in for bloods and assessments every four weeks then two days later to collect my pills, until now I have yet to meet any one else there with myeloma! My nearest myeloma support group is at tunbridge wells which is about 35 to 40 miles away from my home.
This is why I find this site so helpful.
Thanking you all for this.
Babs

[tomParticipant]

Hi Babs
Thats a fair distance to travel when you feel a we bit weary 🙁

Yes this site is a Godsend for us all MM'ers and Those great people that look after us when we aint too good 😀
Hope your doing well on your treatment

Love Tom "Onwards and Upwards" xx

[BabsParticipant]

Hi Tom,
At the moment I am feeling the best I have since prior to diagnosis, planning on keeping this way as long as I can too.
I can drive short distances but need to be careful as if back starts to ache I can have problems with driving, so my husband has said he will come with me and drive me to the next meeting, it is not until March and is held bi- monthly.
I also went on the bus last week, not as comfortable as driving so shook my back about a little but I have mastered how to deal with it now. luckily I was given a strong course of Radiotheraphy in 2011 which took my severe back pain away (also I hope this remains this way for as long as it can,) currently I only take paracetamol when aching is bad which is not too often now.
Love Babs x

[AliParticipant]

Hi Babs
I've been wondering how you are getting on with your new maintenance treatment. My mums on her 2nd
Cycle now and is feeling ok, except for a terrible shoulder pain and tonight she has come out in itchy lumps. It's nice that your hubby is going with you to your nex t meeting:-)

Hi Tom
I hope you are feeling well 🙂

Love Ali x

[BabsParticipant]

Hi Ali,
Yes sorry not kept in touch since before Christmas, I was being very unwell to such an extent my hubby said I was as bad as before diagnosis, I missed all pre christmas meets with friends and was so fed up and as we had hotel booked for three days over christmas was worried I would be ill the whole time so Thursday before I just stopped the tablets – had good time and was well and then phoned the nurses in the new year.Not sure this was the correct thing to do and am not recomending it!
My consultant said it must have been the new medication but wants me to continue with the revlimid which I am currently now taking , day 13 today, so far seems ok, fingers crossed.
Good to hear your mum feeling ok, I didnt have any itching or pains, I think the side effects of the tablets aggrevated other health problems I have which are not myeloma related.
Best wishes to you and your mum,
Love Babs
xx

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