This topic contains 18 replies, has 10 voices, and was last updated by 
jmsmyth 12 years, 4 months ago.
Hi
Frank finished 1st week of CDT. I thought he was managing fine as his form was good. Now I find out that he has been feeling lousy. Pins and needles in hand (already had slight pins and needles due to past injury). He said he feels like aliens have taken over his body. He phoned helpline and they said he has to stop Thalidomide and he has to see registrar on Monday. does anyone know what happens now. I was under impression that Thalidomide was first resort and worked well. What happens next? What can he take in place of it. Has anyone any info on this. Would appreciate any info. I am worried sick.
Jean x
Hi Jean and Frank
Sorry I cant add to any of this only to send you both a CyBer (HUG). I know its scary when they tell you to come off something and have to wait for a few days before something else is sorted they might give Frank a reduced dose?
Keep strong they will soon find something that "Fits" Frank's set up.
Love and Hugs Sent ((HUGS)) xxx
Tom "Onwards and Upwards xx
Hi Jean,
I had a similar experience to Frank when I started CDT, with what I now know to be the start of PN (Peripheral Neuropathy) problems. My feet were worse than my hands and it wasn't until I was on Velcade that it became pretty bad… to the point where I had to have the dose lowered twice.
It may be that the Thalidomide dose might have to be lowered… but I would think hard and very, very long if it comes to abandoning it altogether. I stuck with CDT and it got me into complete remission from a Kappa Light Chain reading of 3,500 in just 4 Cycles. Yes, it left me with PN but considering where we are, what we have and where we are going I felt it was a price worth paying. To abandon a very good treatment in order to alleviate a side-effect (unless it is truly unbearable) is, for me, a short-sighted option.
CDT was not pleasant… like Frank I felt that my body was taken over and I often wondered what good it was doing when it felt so strange and at times so bad. But CDT has the 'C'… and Cyclophosphamide is a chemotherapy… and all the temporary side-effects that goes with it. My GP told me that my body would feel that it was taking a battering and so it proved… but the end result was so worth it.
Obviously you will have to discuss the treatment with the registrar and your consultant but I urge you to be cautious about abandoning the treatment at such an early stage. There aren't that many treatments available (although there are some exciting new developments about to come online) and there are no guarantees that the others will do any better (or they would have been first choice instead of CDT).
My mantra was[b] 'Whatever It Takes'[/b]… and I meant it. My PN is no fun… but I'm still here and the good points far outweigh the bad. 🙂
Regards
Dai.
Hi Jean
Here are some tips that might help you
The anxiety is fairly normal,kicks in over silly things,Dex moments they are convinced they are right,so just remind him when he has taken his dex.Ormake a chart out of tablets then tick when anxiety starts tick under it,and you will see a patten emerge.
Massage seemed to help Slim and some one told me that Palmers cocoa butter formula helps.Nystan for sore mouth.
I think unless he is finding it beyond him,they know about all these things.Jean I found out Amitriptyline which my GP prescribed 5mg is a known help for PN and Kings prescribed 25mg and Slim has not had any PN since!!!!!!!
Finding a hospital that knows all about Myeloma and PN like Kings makes you realise the difference in treatment.Eve
Dear Tom, Dia and Eve
Thanks for support and tips. Really don't want him to come off Thalidomide so I will keep in mind Dai what you said. Will have to wait until Monday to see what they come up with.
Thanks again
Jean xx
hello Jean
sorry frank is having a bit of PN its not very nice I was im afraid like Dia the mantra is WHAT EVER IT TAKES I will do it I was determined about it I know you will find it difficult to convince Frank but Ihope you can
Lots Of love Jo x
Dear Jean,
This is going to sound ridiculous, but it depends on what Frank means when he says that 'aliens have taken over his body.' Not everyone is comfortable with discussing every nuance of their responses to a drug regimen. Some people even find it difficult to admitting to having ongoing pain. Once you factor nausea, fatigue, dizziness, hot flushes and even steroid induced anxiety or hyperactivity into the equation, how do you talk about it?
And yet, in the end, you must talk about it. Our doctors are trying to find a balance between exposing us to damaging treatments which may help
us and moving us on to another set of meds.
Those of us who have had myeloma for a while are probably aware that at the moment we have a finite range of treatments in existence, and certainly a finite number that the NHS has approved. This means that if we race through all the treatments too fast, we'll get to a stage where there's nothing left for us to take. Our bodies will partly determine how fast this process happens, as each treatment will either suppress the myeloma for a time or it won't, and when a medication stops working we move on to another one. Another limiting factor is side-effects. If they are too awful or dangerous, then together with our doctors, we might decide to lower the dose of a particular therapy, or abandon it altogether.
I didn't understand this when I started CDT, soon after I was diagnosed in 2008. I asked my oncologist what the side effects would be, and I was given a very vague answer: you may have very few side-effects, some people continue working while on CDT- if you have any problems contact us. This was not a good response for someone like me. I know that my doctor didn't want to 'feed' a list of side effects into my head in case I then waited for them and every twinge was part of some prediction coming true. However, once I was hit by the side effects, I assumed that I was one of these people who couldn't tolerate treatments and this was a frightening prospect for me. It really amplified my stress. Looking back on it, I now know that what I went through was well withing the range of what others experience. I remember my husband ringing Ellen the myeloma nurse, to find out whether my symptoms were off the wall and whether I could continue on the meds.
I'll give you an idea of my symptoms on CDT: I was very fatigued and felt some nausea from the Cyclophosphamide which was controlled by drugs, I was dizzy from the Thalidomide, I felt oddly hyper from the Dexamthasone and also hungry, and when the dex was stopped each cycle, I found it difficult to walk and do stuff until my body adjusted each time. I chose to lay in bed for a number of hours a day and then I'd get up to cook a meal and to exercise. My quality of life was still good as I could read in bed and I love reading. I had no way of separating out what drug was causing what because no-one had told me about potential side effects. Surely if it was 'normal', my doctor would have mentioned it? After my second course of CDT, I was so dizzy, I fell over in the kitchen a couple of times and wasn't sure where I might have lost consciousness for a split second.
After four years of treatment and contact with myeloma friends and reading lots of posts, I know now that many of my symptoms were pretty common. When I chose to tell my doctor about them, he immediately took me off all treatment for two weeks, and then re-introduced each med for a week at a time to try and find out what was causing what. This was a very scientifically rigorous approach, but my stress was going through the roof as I was worried we weren't tough enough on the myeloma. It was summer, my doctor and his colleague went off for the summer hols soon after. I couldn't discuss what drug was causing what. A replacement was confused and assumed that I had finished my treatment after just two cycles and one very aborted cycle. I was told I could stop treatment and proceed to transplant. My paraproteins were going down, and at one stage they had reached zero and then had grown again. I complained and asked for another cycle. I got it, and then the third doctor was gone and I faced a locum who was struggling to read my notes as he'd clearly had no time to prepare for his consultation with me. The locum stressed that a transplant was likely to help me, so I agreed.
Even though I was told that my results were very good, I have always regretted not consolidating my response with another course of CDT, and perhaps even waiting to see whether I might continue for a while in remission on CDT, before having a transplant.
Frank's pins and needles could very well be neuropathy. If that is caused by Thalidomide, it can sometimes be permanent. It is important to tell the onc in case the dose should be lowered. I am now getting the beginnings of neuropathy, as I've been on Thalidomide again after my relapse. Again, we all walk a fine line between getting our treatment adjusted in a sensible way and between being suddenly taken off a treatment, and given the next one. I will talk about my neuropathy at my next appointment, but I will stress that it is well within what I can cope with and that I'm delighted that I've responded to Thalidomide again.
I hope Frank does not suffer too much and that he can have some quality of life whatever treatment he's on.
Best,
Eva
Dear Jean
Eva's and Dai's replies are first rate I think. I can't comment on the thalidomide as I had Revlimid, but they are right that the niggling and low grade side effects and feelings of 'body out of own control ' are common side effects of what are VERY toxic and powerful drugs. Frank will have to choose his own path here but I'm with the others, it's a case of ' whatever it takes' to get as long as possible. It is important for him to tell the docs exactly how he feels though, in case any really harmful side effects are occurring.
Good luck, it's a tough road
Love Helen
Thanks Jo, Eva and Helen
I really appreciate your replies and have taken on board all that has been said. I really don't know how to describe Frank and his attitude to this bloody disease. When first diagnosed he told the family that he wanted no research done on this disease and any info that he needed to know his doctor would tell him. He has great faIth in her. I am the one who asks the questions. He is a very strong willed man who does not suffer fools gladly and his way of dealing with this has surprised me for 6 years since diagnoses. I get information from the forum and sometime he listens and sometimes not. When he phoned the helpline this morning they told him to stop the Tahlidomide right away. He had stopped it yesterday after reading the information leaflet he had been given on the drug,as it also stated to stop it immediately if presented with these side effects. Although he still has the pins and needles in hand and feet he says he feels so much better and I have to say he's in good form, as he spent most of the night shouting at the football players on Tv. I think he tries to protect me – by keeping from me exactly what is going on with him. I broached the subject tonight of what Dai, Jo and Eva had said about the treatment and about "whatever it takes". He said that there was no way that he could live like that for the next 6 months. I suggested asking for drug to be reduced as I am aware of its success but he just shrugged and said he would see what Monday brings. I am worried sick as I do know about Revlimid but I asked his consultant about it and was told it was only given in trials, and don't know what it can be replaced with and if it would do as good a job as Thalidomide. He has a history of drug intolerance, having bad reactions to certain antibiotics. Not sure if it is relevant,
Thank you all so much for listening to me and it's good to know you are all there. Will let you know how it goes on Monday
Love Jean
Hi Jean,
I fully understand your concerns… you want to know what is available and how it will affect Frank. I also understand Frank's viewpoint… he doesn't want to have to accept a treatment that will make him miserable for 4,5 or even 6 cycles… especially if the side-effects, in this case PN, become a semi-permanent condition of his living. I think he is being sensible to wait for the consult on Monday… to see what is available, be it alternative drugs or reductions in dosage.
:-0 🙁 :-0
I have just deleted about 500 words of reply… I am angry for you… let's leave it at that until after Monday.
Regards and heartfelt sympathy. 🙂
Dai.
Hi All
Dai after reading your post I realised that I was angry as well. Frank had gone to bed but I went up and told him he was going to listen to me. I told him about all of the posts and of the information that I had gotten. And he LISTENED and asked questions. One of the questions was how long have you lived with PN? Helen I asked him if he felt that his 'body was out of control' and he said that was it exactly. We had a good talk but I didn't tell him how scared I was, I couldn't put that on him. I do feel a bit easer now. Thank you all for your advice and support
Love Jean 🙂
Hi Helen,
I have PN and I have had it since my treatment started in 2009. I call it sponge foot because that is how it feels. Most of the time I just ignore it, it does not affect my mobility as far as I can tell. I also get the odd tingle in my hands, in fact I have it as I type right now, but, again, it does not seem to affect my ability to do anything I want to do so I ignore that as well. I did tell my Consultant in the early days and she said "If you can live with it ok, but if it gets any worse to let them know". It did not get any worse.
Kindest regards – Vasbyte
David
Hi Jean
Once when I was in the car with Slim,he was getting very jumpy and very annoying about my driving,he use to drive most of the time,i just came in handy when he had a drink and could not drive,but on this occasion we were on are way to hospital and he was so annoying i stopped the car.
He told me not to go any further as the car was going to crash,I calmed him down,and after awhile he realised all these feelings,were due to the drugs,even now I think he has a few problems which he does not tell me about.I put it down to a chemo brain,and I do not think I will ever get the man I new completely back but he is still here and we have are good moments some times.Love Eve
Dear Eve
He will be different but similar, you will both adapt to the new 'normal'. It is very hard to endure the SCT and you will both be worried sick, you are at the worst stage now, give him time and space to come round, every cell in his body has been poisoned and we can only hope that it works for a long time – keeping the alien invader ar bay.
Thinking of you
Love Helen
Hi Helen
I know,its just he has been here before and it took a lot out of him then,I was told then,he may never get back to the man he was,and they were right then,but give Slim his due he is a fighter,so fingers crossed.
I think it,s just me feeling sorry for myself,have given myself a kick up the bum:-P and Tom cheered me up 🙂
Going to crack on with the rest of the day.
So glad you enjoyed NZ I had jet lag for about 5 days on outward but not inward but we did 3 months out there so plenty of time to catch up. Love Eve
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