[andygParticipant]

Hi Susie.

It’s Tuesday night time for my usual Dex fueled ramblings.

I thought about you today as I got cramp in my feet and legs. It wasn’t too bad and it was expected as I’d taken my last Pomalidomide tablet Monday and it’s a regular end of cycle occurrence as it was when I was on Revilimid. I also got cramp in my fingers, how that happens with no muscles there I’m not sure, though I guess it must be the muscles in my arms causing it. Anyway it made typing on my iPhone or iPad interesting to say the least.

I’ve had several doses of radiotherapy and that was at a different hospital fortunately the hospital is only six miles away so not much of an inconvenience as you have to put up with. Not sure about the pain going away will influence the need for the radiotherapy I’ve had it to blast away lesions and bone. Also it’s could be a bit like dental appointments toothache nearly always disappears as you get close to the appointment time lol. Anyway the MRI will tell all hopefully.

I went for a DEXA scan the other week to check the density of my bones and whilst I was there they measured my height and weight. I’m now officially five inches shorter than before diagnosis and a bit heavier! Guess I could get a pantomime job over Xmas as one of Snow Whites dwarf I think Grumpy would suit me lol.

That concludes this weeks ramblings it’s time I looked around and try to find a holiday or two to plan after all we have been back from or last trip over a week.

Every day is a gift.

Andy xx

[susieParticipant]

I took my 8 day cyclo on Wednesday and have felt ill since despite it being a reduced dose. I see consultant next Tuesday and the way I feel at the moment, he is going to have to stop the 8 day dose. I don’t know why the day 1 has no effect on me, its only the 2nd dose. The difference being that the 1st dose is taken with Dex. I was told to take the Cyclo first thing in the morning on an empty stomach. I just wondered how others take this drug and whether taking it differently may stop its effect on me. I don’t feel sick I just feel really unwell in myself.
Any advice ?

[andygParticipant]

Hi Susie.

No advice really. I took my cyclophosomide on Sundays so I could be off colour Mon, Tue, Wed, and sometimes Thursday so I could enjoy the weekend when Steph was off. That only happened weeks 2 & 3 of each cycle due to the Dex effect week one. I took my Cyclo with lots of water but even though I was on Cyclophosamide over two years I never found an answer to the nausea other than anti sickness pills. I stuck it out because it worked.  I started my anti sickness pills before I took the Cyclophosamide.

Sorry I can’t help.

Every day is a gift.

Andy xx

[susieParticipant]

Hi Andy

Thanks for your reply. I had my appointment yesterday and was really pleased to be told my PP’s are now at 8 after cycle 2. So I asked if I could have a break from the day 8 cyclophosphamide. My consultant was quite happy to do that and said he wasn’t convinced by cyclophos anyway. So hopefully my next cycle wont be so bad. Although I am beginning to feel better, its taken over a week. I still feel very weak and strangely if I’m due food, I begin to feel quite faint, cold and sweaty, until I get some food. I presume my blood sugar gets low. The other odd thing is that I now have a numb tongue, which he was very interested in. I’ve never thought much of it but he said I must keep an eye on it, yet I have no PN.

All the best Andy. Hope you’ve found another holiday to look forward to.

susie

[susieParticipant]

Hi Folks

I’ve developed a really sore tongue. It started with it being numb, now its sore but hasn’t got any ulcers. I cann’t taste various things either. I did tell consultant about the numb feeling, but he made little of it and told me to keep an eye on it !
Can anyone advise what I can do to stop it getting any worse. I rinse with mouthwash regularly.
Best wishes
susie

[DorothyParticipant]

I am on cycle 8 now ….last one and have some mouth soreness again no ulcers. Try Nystatin from your doc or hospital. I also find ice chipped and sucked works well. I have loads of ice with cold drinks and have to have hot drinks really hot. My taste is always up and down, I have real difficulty with taste and smell too. I have fizzy water and lots of coke (which I would not normally drink BUT it does cut through the goop)
Do you have Corsodyl or specialist mouthwash from the hospital…it’s worth sorting out now, before it gets any worse but what is important is not to let it get a hold.

Hope you’re feeling better soon – keep smiling.
Love
Dorothy

[andygParticipant]

Hi Susie.

I had trouble with my mouth it’s due to the chemo. The chemo works by killing fast growing cells and your mouth unfortunately is full of them. Good oral hygiene is essential. I used Nystatin and Difflan mouthwash though I was told to stop the mouthwash by my dental consultant due to it’s alcohol content and use warm water and salt instead. A teaspoon of salt in a warm glass of water held in the mouth for two minutes 4 times a day. I didn’t have trouble with a numb tongue though but I guess the cause will be the same.

My sense of taste was hammered everything tasted metallic and food and drink became a chore I had to force myself to eat to maintain my weight. Spicy food was the only thing I could really taste and a pint of beer could last me all night! My sense of smell went as well and I also found my concentration suffered to. You have to remember  I had over two years of RCD so I suffered most side effects over that time the norm is 6-8 cycles pre SCT though of course there is execeptions.

When you get to SCT and they clean your bone marrow out with high dose chemo the mouth problem is amplified.

Other side effects due to Dex are the thining of your skin and muscle wastage it can also weaken bones and in worse cases cause diabetes! I’ve been told to hold back on sweet stuff around Dex time and have a high protein diet to help prevent muscle wastage and have some exercise if possible.

Oh aren’t I full of good cheer.

Hope I haven’t spoilt your day.

Every day is a gift.

Andy xx

• This reply was modified 9 years, 11 months ago by  andyg.

[susieParticipant]

Hi Andy/Dorothy

Thanks for your input. I had my end of cycle hospital appointment yesterday, which to me seemed a disaster, again. I told consultant about my tongue, when I said there were no ulcers he just dismissed the problem, didn’t even look at it. Gave no advice at all. Then when I went to get my drugs there were only three drugs, apparently the consultant had forgotten to prescribe the missing ones. I had to go back to the ward to sort it out. When I got home I realised there was another one missing. I had been on Septrin since starting treatment. It was only one tab on Mon, Wed and Fri, which I could never understand coz it doesn’t even maintain a blood level given like that. Today the CNS said she’d find out if consultant wanted it given, if I didn’t hear he didn’t. Well I haven’t heard so my question is if I needed for 3 cycles why do I suddenly not need it now.

Sorry to rant like this but I am not happy, I’ve lost confidence in him. He’s very pleasant and charming but as time has gone on he seems to get worse. I think the drug incident is poor. I got no apology or explanation. Its not the first thing I haven’t been happy with.

I do wonder if because my PP’s have come down so well he doesn’t think my care isn’t so important now. The good thing is I don’t have to go back for 4 wks, there’s no 2 week appt this time.
Maybe I expect too much.
Andy, I still don’t think I’ll go for SCT if its offered to me. I’m on my own and the recovery period would be so difficult to manage. If my MM can be controlled by maintenance I’d be happy with that. I’m nearly 70 and am a great believer in quality not quantity if you know what I mean.

Best wishes
susie

[sue48Participant]

Hi Susie

I agree with you regarding SCT, I am 66 and decided against it was diagnosed in 2012, was so ill with the treatment CDT first time, I to believe in quality rather than quantity, I am now on my 2nd line of treatment, VCD after relapsing after 18 months, so far no side affects, keeping fingers crossed.  I say why be ill for around 4-6 months with a SCT when sometimes it could only give you 12 months in remission, so long as they keep bringing new drugs out, I will stick with the treatment. I feel fine with no pain or anything.

Hope all goes well for you.

Sue48

[DorothyParticipant]

Hi Susie
Sounds like you have a very poor team and consultant. I cannot praise my team enough, although there is a new registrar who is less than helpful …but i have are a complaint about his manner he messed up my drugs and appointment time ..easily sorted by the admin in my team. We had a coffee morning this week in the clinic and the consultant came, he brought all the team and stayed for over an hour talking to patients, families and being very supportive.

Regarding your mouth I am on cycle 8 my mouth is very sore, ulcers and no taste. I have the Nystatin and simple mouthwash but again no alcohol should be in it, I agree with Alan spicy food and fizzy drinks help, I now have fizzy water with lots of ice. But the hot mouth, and ulcers still persist. I am hoping that two weeks off treatment over Christmas will help. Then I am preparing for a Stem Cell transplant so more side effects and bad ones too.

Please make some approach to your hospital about your consultant it seems he needs to concentrate on his patients and their needs and get a better bedside manner. we patients must be proactive in order to get progress. Hope you are feeling better
Bless you
Dorothy

[susieParticipant]

Hi Dorothy

My problem is my consultant, as I said, is very pleasant and easy to talk to. I don’t want to make an official complaint but I do feel an apology or explanation, should be given. He has always said from the start that he’d be lost without his nurses to remind him of things. I have wondered whether to have a word with my GP about how I am feeling. I thought also on my next appointment I will ask before the appointment is over , what drugs I am meant to be picking up.

Were you on Septrin (co-trimoxozole) during your treatment ? It seems there are so many variations on what MM patients are treated with.

Best Wishes
susie

[susieParticipant]

Just one question. Does anyone know if I am entitled to copies of letters that are sent to my GP ?
When I was being monitored for MGUS I always got a copy, but since my treatment started I haven’t had any.
Best wishes
susie

[DorothyParticipant]

Hi Susie
Yes I am on Septarin (co- trimoxozole)
I always write a journal and questions before I go to the consultant meeting – and I always write what he has said and any response to questions as it helps me remember later.

And Yes I always receive copies of letters after each consultation I keep them in a file and mark anything I want to ask about, or don’t understand or am confused about because it dosnt match up with what was said to me.

As I said my consultant is young, passionate and very patient friendly, he really seems to understand how things are for us ..I am very fortunate with him.

Do keep strong Susie, I am 60, and was a teacher in a former time so I tend to be a bit questing but we all need to feel we are getting the best, we deserve to be kept informed and to be able to ask questions so that we can make informed and right decisions, treatment is in partnership …not done to us but with us …thinking of you

Dorothy

[davidbrParticipant]

Just a suggestion.

I have a smart phone and use a voice recorder APP to record all my appointments with the hospital. I find them invaluable as a reference which I return to again and again especially my earlier appointments when I didn’t understand the terms being used. Also very good as I forget much of what was said as soon as i walk out the door.

I always tell the consultant I am recording for my own reference and later referral.

And yes you have a right to see and have a copy of any information your doctor has on file. I always get a copy of letters sent to my GP.

• This reply was modified 9 years, 11 months ago by  davidbr.

[susieParticipant]

Thanks Dorothy

I shall ring my consultants secretary tomorrow and ask for copies of consult letters to my GP. Whether I will get them back dated I don’t know but its worth asking.
You sound to be so lucky with your consultant, mine is very pleasant to talk to but seems so vague, and has to be prompted a lot by the nurses. Still I suppose I shouldn’t grumble, when I think my PP’s have come down from 63 to 8 so far, over 2 cycles. He did act when I told him how bad the cyclophosphamide made me feel and he stopped the day 8 dose, so that this cycle hopefully wont be half as bad. As I have said before perhaps I expect too much.
Can you tell me which cycle you are on. I’m just interested if you are still on the Septrin. Considering it is given to prevent pneumonia I would have thought I should continue.

Best wishes
susie

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