[jeff605Participant]

Susie, I really feel for you going through all this on your own, it’s so hard at times, as I know only too well. How I miss my wife being there with me, even as I say, if it’s only to tell me to stop moaning and get on with it !! She was always there to support me and ask the right questions. I find the forum and the kind help and advice so freely given by the people on it, and their experiences during the campaign against Myeloma invaluable. So keep using it and the support it offers, Susie.
Best wishes, we are here for you through the dark days, Jeff

[susieParticipant]

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

[andygParticipant]

Hi Susie.

The nauseas I had wasn’t too bad I was never sick or anywhere close to it. I used to start taking my metroclopramide the night before my Cyclophosamide. The runs were sometimes a problem for me also and I was switched to Ondansetron which helped. As you are just beginning your treatment I would expect some problems whilst your body get used to being “poisoned ” but it does get easier.

The symptoms I had for osteonacrosis of the jaw started  with what I thought was a small ulcer that wouldn’t heal.

Although it’s well know problem with Zometa it’s a rare problem. Good oral hygiene is necessary with regular dental check ups BUT NO extractions or major dental work should be undertaken without at least a 3 month break from Zometa first.

Try not to worry about what may go wrong and concentrate on getting through your current treatment you’ll have enough to deal with without worrying about what ifs.

Every day is a gift.

Andy xx

[susieParticipant]

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

[andygParticipant]

Evening Susie.

Yeah I had the infusion over 15 mins. For me the flu type side effects of Zometa were quite mild and it took me a little while to put the two together. Probably due to other side effects bothering me more.

I wouldn’t change anything until you’ve been through a few cycles and then I would only change things if something was really causing a major quality of life problems. If the doctors prescribe it I take it because I believe, hope, they know best and I guess I’m bloodyminded.

Like I’ve said before it gets easier the more cycles you do though hopefully you’ll only need 6-8 before your ready for a SCT.

Right back to ONJ (osteonacrosis of the jaw) my problem is still ongoing it’s not being treated and the dental consultant isn’t too keen on intervention as it’s not proven to be very effective. He reckons the dead bone will eventually break of after new bone has grown beneath it. That’s the good news the bad news it could take a few years! Doesn’t he know I may not have a few years lol.

It’s not daft to look or worry at the worst side of things but I decided I wasn’t going to think about what ifs. Since my Myeloma has proven reluctant to play fair and refuses to be beaten by most of the drugs available I take each day at a time and try to tackle problems as they occur. My wife on the other hand unfortunately is a worrier but we both agree we’ve got to enjoy what we have so we have regular holidays go out as often as possible whilst we can because we don’t know when things will take a turn for the worse. Hopefully my money will run out before I do LOL.

Okay I’m starting to ramble on now #theDEXeffect every Tuesday nights the same

[susieParticipant]

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

[DorothyParticipant]

Hi Susie
Just reading through a few post and found yours, I have relapsed Myeloma and am on cycle 6 od Velcade, cyclophosomide and dexamehtasone I am exhausted most days and have the side effects you mention. However to encourage you I had initial treatment 10 years ago with a stem cell transplant and I truly believe it gave me a good/better remission time. Although this treatment regime is a real struggle i am hoping for another 10 years
best of luck

Dorothy

[andygParticipant]

Hi Susie.

We’ve just got home from a fab weekend in Athens. Laughs booze more laughing and yes more booze and now as it’s Tuesday DEX.

Your post reminded me about the cramps I used to get when I was on Revlimid. It was always at the end of the cycles I used to get cramps in my legs, sometimes my hands and my stomach. I know it’s annoying but I just put up with it as I didn’t want anything reduced drug wise. I think the cramps can be caused by low potassium because I was regularly given potassium supplements, which were awful, though I’m not 100% sure.

I promise you will get used to the chemo and things will get “easier” as things progress.

I’ve not had a SCT but it may become a possibility if things keep progressing for me though it’s not certain. So SCTs have been on my mind recently. Here some of my thoughts.

If they offered me to try to go for SCT I would go along with it and see if I could produce the required amount of stem cells. If the right number was harvested then I would have some serious thinking to do as to whether I wanted to transplant straight away or save the stem cells till later. My reasoning being I wouldn’t want to risk my quality of life when it’s ok and a transplant would be holiday limiting for maybe a year or so and I do like my holidays. With myeloma there’s no guarantees and with my track record I’m not sure I’d risk what I have at the moment on a SCT on the other hand if I got a lot worse and SCT was a possibility I’d probably go for it.

Your in a totally different situation to me as your just setting out on your myeloma journey and the big advantage a SCT could give you is drug free time. I know it’s not a walk in the park having a SCT but it COULD give you years of little or no drugs of course you could also quite quickly relapse but you will have drugs to fall back on to. I’m not trying to influence you one way or another that I will do once the SCT question arrives lol and more is known about your individual situation and if you can still put up with my Dex induced rambling.

Anyway I think I’m going on a bit again but I will say I last thing – keep posting your worries and side effects and there’ll always be someone to offer advice or support and if it’s too personal for the board you can message direct to a board member of your choice.

Right I’m going to look around and see if I can find any trips to organise because the holiday portfolio is empty at the moment.

Every day is a gift.

Andy xx

[DorothyParticipant]

Hi Susie – hope all is going well with your treatment, I have just started cycle 7 and will go on to 8 cycles now as the ops are now 6.7 so my consultant is sure they will continue to drop. Yes I agree the side effects of treatment are a struggle but you will get through with help,support band a positive outlook. I try to concentrate on the good days, I take the cyclophosomide, dex and other stuff on Tuesday morning, then have Velcade Tuesday afternoon, tuesday is usually what I call a whizzy day thanks to the steroids…Wednesday is good too so I go with the flow…hope you have lots of support. Try the Macmillan Nurses, they are great at helping and listening. Take each day as it comes and listen to your body, do what you want when you want and go girlie, You don’t say where you are if you are in or near Liverpool I could give you more support. If not look for a local Myeloma Support group too. best wishes
Dorothy xx

[sue48Participant]

Hi Dorothy

Just been reading your post, on the VCD, I am starting that treatment today, I am worried sick of the side effects, are they as bad as what they say.  I went through the CDT 18 months ago and was really ill, so I am terrified once again, I decided not to have the SCT because I was so ill with the treatment, I felt I could not  have coped going through the SCT. Your help would be much appreciated. How long is the treatment for?

Sue

xx

[susieParticipant]

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

[DorothyParticipant]

Hi Susie
Glad you are feeling more positive today – sorry you live so far from me, do try the macmillan nurses, I have a specialist nurse I can contact any time, He works at the Royal Liverpool and is part of the team. He is amazingly knowledgable and supportive on all sorts of levels not just the myeloma, but benefits, access to alternative therapy, what to do if you are worried etc. Not sure if your hospital will have these nurses but speaking to Macmillan will give you some answers.
Keep smiling and stay strong

Dorothy

[susieParticipant]

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

[DorothyParticipant]

Hi Susie So glad you are feeling more positive about the treatment and doing well on your third cycle. I agree the 8th day is often the worst but not too difficult once you know how to deal with the side effects.
Difficult to say about the referral as the consultant will want you to have the best possible treatment – it is worth discussing this with your team and getting a face to face thought/consultation on why they have cozen this hospital rather than a closer one. If you are unwell it is perfectly reasonable to cancel or put off an appointment as you need to be on top of things to cope with what you may hear/treatment you may need to have. Be bold and strong write everything down, questions and answers and do push your own thoughts and ideas too.I find keeping a journal really helps to explain what is going on with me on a daily basis and to remind me what I want to ask at clinic/treatment sessions. Good luck. Dorothy

[susieParticipant]

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

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