Dear Clair,
There are other drugs and even more concentrated treatments such as VD-Pace if things don't work out at first. Feel free to call Ellen the myeloma nurse on this website – she's excellent.
Very best to you and Dad,
Eva
Dear Maureen,
Best to you and Ian.
Since the myeloma treatment is oral at the moment and Ian is in hospital for rehab, it seems odd to me that some accommodation can't be reached with the insurance company. The person looking after rehab might not even be a myeloma doc. Sometimes it requires a 'team effort' to treat someone. I know that there are not supposed to be any myeloma docs practicing privately in Scotland, but rehab for spinal issues could perhaps be classified differently. Also, sometimes, treatment can be assessed by someone from afar and this person might liaise with an NHS doc in Scotland.
Eva
Dear Carryanne,
I've had to travel from Scotland to London for a new phase of my treatment. I'll be keeping a low profile as I'm using someone else's laptop. I'm certainly thinking of you,
Eva
Dear Emma,
Hi – this is Eva. Hope you don't mind me asking, but I couldn't fully understand what you meant by your mum 'not being able to accept overnight care from an agency.' I'm not suggesting she should be able to, I just want to be able to see things more clearly.
Theoretically, hospitals can ask someone to leave, but sometimes if the patient or their family either create a 'fuss' or communicate a considered argument to the most appropriate person in the hierarchy, then the patient's views might be considered with greater care.
I think the 'double whammy' of a broken hip and chemo is a stressful and awful combo. I couldn't be alone for hours at a time if both circumstances applied to me.
Best,
Eva
Dear Carryanne,
First of all welcome to the site – and I'm sorry that you're ill. It's good though that you are receiving treatment.
The medication affects everyone differently so we can't predict exactly how you will react. Most people feel tired and need to rest a lot.
– The C in CDT is Cyclophosphamide and it can make you feel as if you have an upset stomach. You will be given other things to take that will help with that, so you might not notice that at all.
– The D stands for Dexamethasone which is a steroid. On the days you take it, you may feel full of energy and your mind might be racing, and you might even talk more! It could be more difficult to fall asleep. These meds are taken in cycles, so there will be a period when you do not take the steroid. During this time, some people feel more tired.
– The T stands for Thalidomide. This can make you feel sleepy a couple of hours after you've taken it. Some people feel a bit dizzy.
You mentioned you will go on six cycles of CDT. The meds are more likely to affect you the longer you are on them. Of course, that includes doing you good, and fighting the myeloma! When I got to my third cycle I really noticed that I was becoming more tired. It's important to tell your doctor about all your side effects so that they can adjust doses if necessary and also give you other meds to help you feel better.
When you have had CDT for a few months, you might start to lose some hair. This can be a normal response to the treatment. The hair comes back again at a later time.
Some people are lucky and don't have many side-effects from CDT. Feel free to write in to this site as well as talking to your doctor. There is a nurse called Ellen who can be phoned. Her job includes talking to patients who are on treatments and would like to know a bit more about what is happening. She is very helpful and she welcomes calls from patients with myeloma. Her number is 0800 9803322 and the calls are free.
Good luck with your treatment,
Eva
Dear Sal,
I'm really sorry to hear what you've gone through. It was thoughtful of you to let us know what happened. I hope you will be able to get to the stage where the memory of recent events can begin to recede and you can remember your father as he was throughout the years.
Eva
Der Maureen,
I'm so happy to hear that Ian is regaining some movement and that he can be treated. Hopefully you will both be able to feel a little more relaxed after the nightmare situation that you've been through.
Best,
Eva
Dear Dai,
So glad the bloods aren't bad. It's awful waiting, isn't it? I've just had a bizarre situation where I waited for about ten days expecting results and then I found out that a nurse at the local clinic did not send my bloods off to London even though I stressed how important it was. My husband and I got more and more nervous as the day of getting results approached, and then, well, we were back to square one….
Best to you and Janet,
Eva
Hi Sharon,
I had tremors after a couple of cycles of CDT, but I thought that the shakes came from the steroids rather than the Thal. I guess I can't be sure, though a year ago when I was on Thal alone my I saw no evidence of trembling. When I'm on 100mg or more of Thalidomide a day, I feel dizzy and I tend to drop things. Also, an hour after I take my dose I'm tired. This lasts for most of the entire next day, and then, I have this period of one hour – my magic hour, before I take my next dose when I have more energy…
Best,
Eva
Hi Tom,
Yes, anything that's like a 'flow' activity where we can lose ourselves for a while is very important in order to relax.
I read your other posting. Can your myeloma be tracked via bone marrow biopsy?
best,
Eva
Yes, me too. My voice went croaky. It's never really come back to normal but it's less hoarse when I'm not on steroids.
Eva
Dear Tom,
The beginning of a new stage treatment is such a milestone…. Waiting for it must be difficult. My treatment began on the same day as diagnosis, so I had no time to think about it.
UCH sounds really good. I like the fact they're taking care over every bit of the process. I'm impressed by your commitment to mindfulness. I hope you can have some special activities planned. When I was on induction treatment it took a few weeks before it really started to bite. My husband had ordered a few reading surprises for me from Amazon and when I felt tired in the afternoons I was able to rest with a new book.
Don't forget to drink a lot and get some exercise when you're up to it. I went through some phases of withdrawal from company; at other times I really appreciated when friends called and I was able to focus on their lives as well.
Let us know how it goes.
Best,
Eva
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
Dear Keith,
So so pleased.
Eva
Hi Susan,
This is Eva. I think there are a number of things that might be concerning you.
If you wish to communicate with me, you can email evayouren@lineone.net and I am also then prepared to call you and we could chat.
I've had CDT and a transplant. I was very very afraid of having the transplant. I'm now four and a half years post diagnosis.
Ellen the nurse at Myeloma UK is also a good person to talk to.
I certainly don't mind giving you access to my experiences if it might help.
Eva
