[the-old-manParticipant]

Hi Susie

Apropos Frag Min injections

My diagnosis of MM was followed swiftly by a pulmonary embolism and for nine months I had daily injections of Frag Min. A month ago the consultant decided that, istead of Frag Min, I could  take a daily pill called  Rivaroxaban. Check with your consultant as, for me, it is definitely an improvement on the daily tummy injection. If it is as effective as Frag Min, well I don’t know but I trust my consultant.

Best foot forward,

 

 

[andygParticipant]

Hi Susie.

I  was on 40mg of  Dex so that was 20 of the little blighters for four days! Fortunately they cover the nausea from the cyclophosomide  for the first week. The down side was the crash after you stop the Dex.

I’m still on 40mg of Dex and take the 20 little blighters every week! Though I’m not missing not taking the cyclophosomide .

I too take Rivaroxaban my consultant swapped me to them after I had injected myself nearly 800 times with tinzaparin.

Its hard at the start but you’ll get used to your regime and how it effects you. If you feel tired or lethargic rest up don’t try and do too much. Listen to your body. Hopefully you get good results and get to remission/SCT  quickly.

Every day is a gift

Andy xx

[susieParticipant]

Hi Gary
By the time yesterday evening came I felt absolutely awful. I’d had a peculiar headache all day, I looked totally dreadful, and felt it too. Didn’t think I would feel so bad on the first day. The CNS told me I wouldn’t feel side effects for about a week. I spoke to my CNS today who told me I can take paracetamol and Gaviscon for the intense reflux I had in the night. I’ve had 2 days of Dex but I can’t say I’ve been boosted with high energy. All its done is make me feel totally spaced out. I’ve taken it easy today and do feel somewhat better for it. I know I’ll get used to it all.
I do sympathise with you taking 40 dex. is your system used to it after so long?
Take care of yourself
Susie x

[kpParticipant]

Hi Susie,

Sorry I can’t help you with advice re the meds regime but sending you a virtual hug. Hope you are feeling a little better now. One of the posts on the “confusing journey” thread advised me to listen to my body and rest when it was telling me to.

Seems good advice particularly as you adjust to the effects the drugs are having upon you.  I guess you can ring the helpline as well, I have only rung up once and they were really supportive and perhaps more importantly, kind, when I felt I needed direction.

You asked about my levels, I am due a monitoring appt, going for bloods tomorrow so will let you know how I get on following appt next week but I think your need for support and reassurance is greater than mine right now.

I will private message you my new Consultant as the Forum is so very public.

Best wishes Karen x

[andygParticipant]

Hi Susie.

I found the first few cycles of chemo very bad and I think they made me feel quite ill. Have you been given Omeprazole to take before taking the Dex? It’s to protect you from stomach problems. Also don’t take the Dex on an empty stomach I take mine after eating. Cyclophosphamide needs to be taken with plenty of water.

You’ve probably been told all this but it’s worth repeating.

The Dex effect creeps up on you. Before you know it your eating more, doing more and sleeping less oh and in some cases getting bunged up! Everyone reacts differently some get moon faced others sweat a lot you might find yourself rabbiting on about nothing all the time you’ll get to know as time goes by what it’s doing to you. The post Dex crash will find you irritable and argumentative and possibly tired.

The most important thing is listen to your body if you feel tired rest up. If it’s the middle of the afternoon have a nap if that’s how you feel don’t push it. Check your temperature regularly and if it goes above 37.4 ring the day unit for advice. This is important because your immunitity will be low and infections are dangerous and need to be tackled ASAP.

You’ll be an expert on your treatment in no time.

Good luck.

 

Every day is a gift.

Andy xx

[susieParticipant]

Hi Gary
Thanks very much for your info. Its good to know I’m not unusual in what I was feeling. It was just so scary to feel like that when I hadn’t been warned, but I’m ok now.
I was already on Lansoprozole for hiatus hernia but I didn’t know if I could take some Gaviscon, which I can.
You say to take the cyclophosphamide after food but I was told on empty stomach with a metaclopromide which I did and I didn’t feel sick or nausea. It was just that it made me feel ill.
I’m taking the Dex 4 days on 3 days off, so does that build up with each time you take it then ?
Also does the Dex make you feel spaced out ? it makes unable to concentrate.
Every day is indeed a gift
Very best wishes
Susie

[andygParticipant]

Hi Susie.

Its Dex that needs to be taken with food.  Cyclophosphamide needs lots of water.

I found that cyclophosphamide was worse for side effects than  Dex. It makes you feel sickly for a few days well it did in my case. It also killed my sense of smell and taste and it made concentration very hard. I stopped driving because of it and found reading books next to impossible. Food was very hard eat. I lost a bit of weight but found that eating little and often was the way to go. Spicy food was the only food that I could taste. Everything else tasted metallic.

You have to remember I was on RCD for 22 cycles so I guess the side effects for me gradually built up. I used to take my cyclophosphamide on a Sunday night so that by the next weekend I was feeling okish when my wife was home and we could pop to the pub for a drink. Not that I could drink much!

I didn’t take metroclopramide very often  as it gave me the runs. Though did come in handy a few times when I was bunged up!

I only took Dex 4 days on 3 days off for my first 4 cycles then it was reduced to just days 1-4 of each cycle. I’m not sure if that’s the standard treatment.

Every day is a gift.

Andy xx

[susieParticipant]

Hi Gary

thanks for your reply and all the info you gave me. It sure helps to hear other peoples reactions to all these drugs. I wait to get a build up of side effects but I do hope I don’t have to approach your 22 cycles.

I wish you the best

Susie x

[kpParticipant]

Hi Susie, hoping you are doing OK and coping with the treatment regime.

Kind regards

Karen

[susieParticipant]

Hi Karen

Well I finished my first cycle and I have to say it was worse than I thought it would be. Apart from feeling quite unwell, I had this awful headache all the time, together with vision problems which became more frequent as the cycle went on. I found it very frightening, and was worried my eyesight was going to be affected. However, on my rest week it began to disappear and the headache went. So I start cycle 2 tomorrow, not looking forward to it, but I just hope its not as bad. I thought it was the Revlimid. Saw consultant yesterday and he was happy to reduce the dose but I felt it worth persevering for the next cycle and see if its not too bad. He’s referring me for radiotherapy for the plasmacytoma I have on my sacral spine and he agreed to start me on iv bisphosphanates instead of tablets. I don’t feel I can take any extra pills.

How are you getting on? Have you had any more tests, if so I hope the figures are stable.

Best Wishes

susie

[kpParticipant]

Hi Susie,

Hope all goes well for you on the second cycle and not too many side effects.

I had a monitoring appt recently and numbers up again, but no signs of any end organ damage and I feel OK in myself so continuing on the wait and watch protocol for asymptomatic.

It is so hard to define ” fatigue” isn’t it as sometimes I am really tired by mid afternoon and even if I sit and rest for a bit I don’t really feel refreshed. Is this the MM or perhaps I,m not as fit as I used to be. Who knows!!!!

So I am carrying on regardless.

Glad to hear they are going to treat the plasmacytoma, hopefully this reduce the pain you have been experiencing.

Best wishes

Karen

[susieParticipant]

Hi Karen

You say your results are going up. What is your paraprotein . If your fatigue is fatigue, surely that would be a symptom. I don’t know where you’re being monitored but I was monitored for MGUS for 2 or 3 years before I suddenly became active. My pp’s started at 30 but a bmb only showed 2-3% cells, but I now think I must have been smouldering for some time and I too didn’t have the energy I used to.
How often are you monitored now.

I wish you the best. This is such an awful desease isn’t it.

Take Care

susie

[kpParticipant]

Hi Susie, I am monitored 6 weekly at present, last PP was 39. It is an awful disease and different for everyone which I think makes it challenging to manage.

I was only diagnosed in April this year so still trying to come to terms with it all.

I haven’t had a bone marrow biopsy as blood tests don’t show any end organ damage.

Hope you are tolerating your second cycle OK.

Keep well

Karen

 

[Author]

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