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
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
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
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
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
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
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 ?
Thanks Dorothy. I think the only reason the hospital wanted me to go to the further away one is because it is in the county cancer network. I don’t think it was they thought it was any better or worse than the hospital I wanted to go to. I’ll have to wait and see. My consultant is planning another MRI at the end of this cycle, so if the plasmacytoma has reduced the radiotherapy may not be needed anyway. I don’t have the pain anymore so I am just hoping the chemo has done its job with the tumour as well the MM.
Best wishes to all
susie
Hi All. A quick update. I’m doing really well on this 3rd cycle tho I haven’t hit the 8th day cyclophos yet which is the one that seems to hit me. However, I’m hoping now its dose is reduced it wont be so bad. So for anyone out there starting on this MM journey, don’t give up in the begining. Nobody could have been more pessimistic than I was, In tears one day to my brother saying I couldn’t do it. Take my word you can.
Now, I just want to ask all your opinions. I was referred for a radiotherapy assessment to a hospital 2 hours away for possible treatment to my sacral plasmacytoma if the pain remained, which it hasn’t. Unfortunately on the day I wasn’t well enough to make the journey. I had asked to go to a Marsden outlyer which is just 30mins away from here but I was persuaded. Obviously I don’t think my consultant was very pleased that I had to cancel the appointment. Am I being unreasonable to ask to go to a hospital closer to my home ? To have a total 4 hr journey when I could have a 1 hr one, seems better for the patient in my view. Should I stick out for what I want if the matter comes up again ?
Best wishes to all
susie
Hi All and Andy
Andy I do hope you had the best time in Athens. Certainly sounds as tho you did. You deserve it.
Well I had the Zometa infusion and so far I haven’t had any side effects, so thats good. I won’t worry for the next one. They have started me on AdCal. I started cycle 3 today with the reduced dose of cyclophosphamide and so far I’m fine. I do feel very positive today most probably coz I feel well. I’m afraid I don’t do well being ill, never have. My appt yesterday didn’t go well really. I don’t know what was going on, no one seemed to know what they were doing. Patients were coming into the waiting room and being called in before myself. When I had waited over an hour I went to ask, so it ended up me having the infusion and the consultant seeing me then. Anyway I’m not back there till 2 weeks so there’s no point dwelling on it.
I’m to have another MRI at the end of my 3rd cycle to see what the plasmacytoma is doing. The way it
feels I’m sure its shrunk considerably.
Dorothy, I live in High Wycombe in Bucks. As far as I know the nearest support group is in Reading which isn’t very good for me. I have never been told the hospital as a support group and I see no evidence of any.
Well that’s me for now. I took Dex this morning which I expect shows with my rambling.
Best wishes to all
susie
Hi Nick
I’m sorry to welcome you to this forum but never the less welcome. You will find many helpful folks on here who will give you lots of info and advice.
I was interested to read your story which sounds similar to my own. I too was monitored for MGUS for about 3 yrs until I developed severe lower back pain with intense sciatica. I had an MRI at one of these private places the NHS uses, where I was diagnosed with 4 compressed discs, a compression fracture of L1 and a herniated disc. Great I thought, until my haematologist told me there was a large plasmacytoma on my sacral spine which had been completely missed by the person who reported on my MRI. By this time my paraproteins had risen to 62 and I was diagnosed Myeloma with plasmacytoma. I was started on chemo treatment (Myeloma X1 trial) quickly. My consultant said he only wanted me to have radiotherapy to stop my pain,however the pain has gone with the drugs so I’m quite glad as personally I didn’t want radiotherapy unless necessary.
I was interested to read you’re having it before starting your treatment. Where about’s on your spine is the tumour ?. Also where are you being treated.?
Give yourself time to learn as much as you can about this pain of a disease. There are lots of treatments for it, not always pleasant but they get you there. You’ll find this site really useful for info and lots of helpful advice.
Very best wishes
susie
Hi Andy
I’ll have the infusion and see how it goes then. I’ve just finished my 2nd cycle and have been quite poorly today. Spent half the night with epigastric pain every time I laid down so spent it sitting up. Today I’ve spent in the loo, I suppose its coming off the Revlimid. That seems to be my main problem with this treatment, most of my side effects are gastric related. I’ve had stomach problems for some time and taking all these drugs seem to set it all off.
As far as as an SCT, I don’t know that I will go for that. At the moment I don’t feel I could tolerate it, and as far as I understand there’s no guarantee it gives you a long remission.
I have a dental appointment the day before my Zometa just to check all is ok.
I just have to say Andy your posts inspire me. I wish I had your positive attitude even tho I try to be so. I so hope all goes well for you.
Best wishes
susie
Hello Andy
Thanks for your reply which I find encouraging. I expect you’ll gather I’m an awful worrier when it comes to taking any drugs. Once I’ve taken them for a bit I’m ok but until then I just seem to look at the worst side effects they give, daft I know.
When you had the Zometa was it infused over 15 mins, coz I’ve read the flu type side effects etc can be reduced by it being given over a longer period eg 30 mins. What do you reckon?
This cycle hasn’t been half as bad as the first one I must say. I don’t find the Revlimide gives me any problems so thats good.
Did your jaw heal ok when the Zometa was stopped. ?
Best wishes
susie
Hi Gary,
I don’t seem to get any nauseaa or sickness with the cyclophosphamide. I take a metaclopromide with it and it seems to do the trick. My problems happen the day after I’ve taken it, I get the cramps with intensive diarrhoea and the feeling I’m going to pass out, which makes me feel really bad. However my consultant has lowered the dose for the next cycle so I hope that’s the answer.
Do you mind my asking your symptoms when you developed the osteonecrosis of the jaw.
Best wishes
susie
Thanks for your replies. I think my worries come from me seemingly reacting so badly to the drugs so far. But I take on board that none of you have had any desperate side effects from the Zometa. So I will wait, see and hope I don’t as well. I’ll ask if it can be given a little slower if only for the first time, but I wont hold my breath.
Best wishes to all
susie
