[EttaParticipant]

Hi, I've just been diagnosed with Multiple Myeloma.
I had never even heard of it before I got the news, and everything just seems to have happened in a rush, 3 weeks from diagnosis to start of treatment!

Hubby is typing this as, at the moment, I'm feeling yuck and he can type faster than me!

I'm on day 6 of treatment and just had the Zometa injection on Friday. Has anyone else had this as I was feeling OK prior to it but now I'm feeling very light headed (spinning head), very nervous, lethargic, tired but can't settle to sleep and a bit sickly too.

I'd been on the steroids before (the doc said I had Giant Cell Arteritis and further tests found the MM) so I know it's not those as I'd been on them for a while (and they're only for 4 days on 7 off) so the Zometa is the only thing I can think of.

Mainly though the dizziness and lethargy. Is this normal?
I'd be grateful if anyone could confirm or has similar feelings. Also any info I should know as basically we got a load of booklets given to us and told to ring up if we had questions.

Thanks in advance,
Etta

[eveParticipant]

Hi Etta
Welcome to the site,and to your journey,one that no one wants to be on,but we are,Yes it is all a bit mind blowing,so much to take in and learn it will get easier as time goes on,treat it like a big learn ing curve, any questions ask away,

You do not say what chemo you are on,and it can effect you!!
You should have some sickness pills in your pack,these do help,
Also Zometa can have effect on you but usually does not last long
My advice is if your are worried you should have a 24 hr help line make use of it,they can reassure you,Its just a call ,better save than sorry you just might have a reaction to any one of the drugs you take.
Ellen the nurse can answer your questions but I think they are 9 to5.so the number you have someone should be on call to answer your questions,
Hope this is of some help.Eve

[mhnevillParticipant]

Hi Etta

Sorry you have had to join us. All of us can sympathise about the information overload on top of the shock of diagnosis.

I am just starting on Zometa on Tuesday, having taken tablets for my bones so I will let you know how I get on.

Very best wishes for a quick and long remission.

Mavis

[GillParticipant]

Hi Etta and Welcome

It is my husband Stephen that has mm (diagnosed 2008) You will get a great deal of support and information on here, there are even silly games and jokes cracked sometimes.

Don't trawl the internet too closely would be my advice. Most of the information is out of date and can be quite scary. There are trained professionals on this site who can answer your questions as well as general tips from all of us.

One of the good things about the people who post on here is that I have never come across any posts that suggest weird and wonderful "cures". Yes sometimes people give tips on something that they have found that helps with symptoms, but it is always something quite practical or, in the case of a food supplement easily obtainable and not suspect.

OOPS I just remembered I forgot to recommend snake oil:)

As Eve said you may have some anti sickness pills in your bag of "goodies" if not do contact you hospital and ask for help.

Good luck and best wishes from Gill x

[EttaParticipant]

Thanks for the replies!

Eve: I'm on the CDT (tablet form). Got a whole heap of tablets to take some days, but only 8 on the none chemo and steroid days, plus the daily injection (which I was really nervous about doing but I'm getting there slowly).

Didn't get any of the anti-sickness ones (they're in my little red book) but she just said see how you go first so that will be a phone call this morning!

Mhnevill: Thanks, it might be just me with the Zometo I do tend to have strong reactions to tablets (even paracetamol make me dizzy!), hope yours goes OK for you.

Gill: LOL I've been trying to keep away from the internet, so many sites all at opposites so was glad when I came across this one dedicated to Myeloma. I had a trawl through some things first before joining and it looks good.

I'll let you all know how I get on 🙂
Etta

[eveParticipant]

HI Etta
Mind blowing,but do not worry you are not alone,Slim my husband did 6 cycles of ctd and there are lots more people on this site just like you.
Love Eve

[brochoParticipant]

Hi Etta welcome No wonder you are in a spin , at first it all seems so hard to take in but it will get easier in a short time as you get used to the routines of taking all those meds You have already been given good advice as to anti-sickness tablets and I agree that Zometa can affect you but it tends to be temporary The main thing is to let the hospital know about these side-effects as soon as possible , they can always lower the doses if they are causing you problems but dont feel you have to suffer in silence Good luck Etta and dont forget there are lots of lovely people on here only too happy to support you love Bridgetx

[HelenParticipant]

Hi Etta
Welcome
I react to the zometa with lethargy, tiredness and muscle ache, I try to remember to take paracetamol an hour before the injection and then regularly for a day or 2 afterwards. I have been on it since feb 2011 and when have forgotten to take it it has been worse. If you can't take paracetamol maybe the team at the hosp can suggest something else.
Helen

[OutdoorsPaulParticipant]

Hi
I am on my second cycle now(I was diagnosed in August with MM at 39 years old) but on the RCD pathway and also take the zometa(Bisphosphate) injection once a month when visiting my consultant.I dont seem to get the same side effect as you on that..but do feel lethargic and tired on occasions.My legs can feel a little "leggy"as I call it..feels like you have over exercised the day before sort of felling.I have found some daily exercise beneficial to get the legs going and keep up muscle definition.I think most people on this site will say that just listen to you what your body is telling you,if tired have a rest..if feeling energetic go for it!! just dont over do it.
Its taken me at least a month to "get my head" around having Myeloma and learning to live with it but getting there now.I am quite an active outdoor person so believe that we have to be positive and NOT let Myeloma define who we are,but to be who we are and carry on with life.I know it will feel like there is so much info about and so much to take in.But this site is the place to get correct information from professionals and receive really really good support from other members I know i have and do.My steroids can make me a little "spikey" on occasions so if not experienced it yet just to be aware and tell the loved one.I just smile now at my wife and say "think its the steroids and give her a kiss!"Steroids can interrupt my sleep a little but not much,I take them about 7am at breakfast so they are in the system early and wearing off a little at bedtime.Side effect of one of my night meds is drowsiness so that is counteracted luckily.
My dizziness and drowsiness is wearing off slowly now,but all side effects are individual to the person.It does get better!! and slowly you take in more information and start to feel in control of life again.
Your contact nurses are their to help dont feel that you cant speak to them if you have any worries.
I hope some of my new experiences have helped its all still new to me and it is for sure a learning curve.
Always happy to help where I can.
take care
Paul
P.S You and your Hubby go spoil yourself!! have a treat.:-)

[DebsParticipant]

Hi Etta,
Welcome to the site….sorry you've had to join us.
I reacted to zometa the first time I had it – felt very flu like with bone ache all over, hot and cold etc. But it only lasted about 24 hours and since then, I've never had it.
But the tiredness etc is probably due to the CTD….my best bit of advice is to listen to your body. If it tells you to stop, do that. It is hard to do sometimes, but I really believe it helps you to deal with the treatment.

Good luck with it all and keep posting if you have any questions..we're all here to help you.

Debs x

[tomParticipant]

Hi Etta

A warm welcome to the site, and you will soon settle in (its like a old pair of slippers to me warm and cosy)

Now what to say? well I was on CDT as a first response to My MM in Feb 2009, yep loads and loads of pills:-( as for the reaction I was very very tired during the CDT that I had to go on the sick:-/ I was on the sick for bang up 12 months before I went back on Light duties (May 2010) and during that time I had 5 courses of CDT followed by my Stem Cell Harvest and transplant.

Never got Zometa until after my Transplant? for some reason but that gave me flue like symptoms to start with.

Think thats all for the moment.

Good Luck on your road to remission Loads of us have done it 😎

Love

Tom "Onwards and Upwards" xxx

[EttaParticipant]

Hubby here….

We rang the helpline the hospital gave us this morning and they told us it sounds like she has mild flu symptoms from the Zometa and they will check back with us tomorrow morning to see how she's doing.

Thanks everyone for the advice, I think she's just a bit reluctant to let others fuss over her, but I keep telling her she's going to have good days and bad and that's what the helpline is for, to set her mind at ease!

On another note, is it normal for the consultant to [b]not[/b] tell you what stage she's at? When we asked (we'd read the Macmillan booklet about it when we found out) he just said he's not concerned about stages just about treating her. While that sounds good, you still get that nagging doubt in the back of your head that they're not telling you something for a reason.

Anyway, thanks again.

[tomParticipant]

Hi Etta's Hubby

Sounds like the symptoms I had flu like but i got used to that.

Tell Etta from me that she needs to let people fuss over her the more the better:-D

Just a reminder keep your eye on Etta's temperture and dont let it get too high.

Tom "Onwards and Upwards"

[brochoParticipant]

Hi Ettas hubby I hope she is feeling better by now . I agree its good to let someone look after you now and again but sometimes its hard to let them do it A lot of doctors dont agree with staging now we have so many new drugs and treatments its not as relevant as it used to be so try not to worry love Bridget

[BADGERParticipant]

Hello Ettas Husband
When I had CDT i felt terrible all the time I was on the DEX no sleep but tired all the time it also makes you very irritable or it did me so bare with her if this happens I wasn't
sick which was lucky my consultant also said never mind about what stage I never did find out. I didnt have zometa but premidrinate same sort of thing it made my bones ache to start with but ok after a while Etta didnt say how old she is if she doesn't mind telling us ok if she doesn't
Very Best wishes Jo

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