[tomParticipant]

Hi Helen and Mum

Sorry you are here 🙁 but its best place 😀

I am on Zometa and the first time I had it I had flue like symptoms for a few days (aches and pains in bone structure) but it only was that first time, I now go every four weeks for my infusion and so far tomorrow (thurs) will be my 13th and all is going great.

Good Luck to you and Mum8-)

Love
Tom "Onwards and Upwards"

[helenpageukParticipant]

Thanks so much Tom and good to hear that the symptoms are short lived. All the best for tomorrow. Are you on the same trial as mum? If so how are you finding it? Best wishes Helen

[helenpageukParticipant]

Me again. Mum just got back from a&e as her temperature went up to 38.2. The dr advised that she should do this. They have just advised her to take paracetamol and drink lots. Did the zometa cause you to have a temperature?Sorry to keep asking so many questions! Best wishes Helen

[eveParticipant]

Hi Helen

Sorry you have had to join this site,but you are welcome.
this is what the site is for to ask question,get support,and rant and rave if you wish.so welcome again to the big learning curve.

Ask your Questions on the other sites as,Re starting a discussion is not were people on this site look very often,you will be picked up ,on other subjects and get answers quickly.hope thats some help.

As for temperature ,good your got it checked,but if it keeps rising and your mum gets any other side effects,go back,make sure they take blood to look for infection,do not accept they know best,if you feel that your mums not responding,you will have to make yourself heard.
I know all this sounds worrying ,but it will make more sense it a couple of months,and never apologise for asking questions,to anybody.

keep in touch Eve

[helenpageukParticipant]

Thanks Eve. Mum has text me this morning to say that her aches and pains seem to have subsided and her temperature has returned to normal 🙂 I will go on other sites to ask my questions in future.

Thank you

Helen

[eveParticipant]

Hi Helen
Good to know your mum feels a lot better. Its very worrying at the start,but your mum will soon get into the routine of things,do keep posting,it might help your mum to post as well,there is light at the end of the tunnel.
There will always be people who can help you,with any questions, so good luck and keep in touch eve

[tomParticipant]

Hi Helen

Am Pleased your Mum is getting better, and am sure the Zometa will cause no more problem:-D
As for me well roughly I was diagnosed in Jan 2009 went on CDT, then had stem cell harvest and leading up to a Stem Cell Transplant in December 2009, went back to work In May 2010 on light duties, and thats where I stand now, and the only thing I have is the Zometa:-D
Dont worry about asking Questions thats the way we learn,so ask away 😎

I hope you dont think Eve means use another site? cos Eve means start a new thread on this site, you will find the threads at the top left of this page and the Categories so all you need to do is find where it might fit click on that link then "Start a new conversation:-D

Good Luck and will catch you on the boards as we both ask Q's

Love

Tom "Onwards and Upwards xxxx

[helenpageukParticipant]

Thanks Tom, that's really useful. I am so glad that I found this website. My Fiance, brother and sister in law are currently raising lots of money for Myeloma UK to make sure that it continues with the amazing work that they currently do.
I am glad to hear that you are doing well. That is amazing that you are only on the Zometa 🙂 I am really pleased for you. May I ask how the stem cell transplant was? I have read bits and bobs about it and it doesn't sound too great.
Mum goes to hospital this Wednesday for her first check up. I think she is taking lots of questions to ask with her. I know that since the Zometa infusion, she is generally a lot more achey and I think she would like to ask the Doctor questions about that. She also was woken last night with a terrible pain on the right hand side of her body which she described as a similar feeling to the worst case of indigestion she has ever had.
She is taking 10mg of Morphine in the morning and 10mg on the evening to help with the pain from her back and rib area and then liquid morphine about twice in the day. She says that it is not really having an effect yet so I think she may ask the doctor about increasing the dose. I think she is generally fairly concerned about the amount of medication that she is putting into her body and the effect that it will have on her insides. She starts her 20 pills in the morning again tomorrow.

Anyway, it is Sunday night and I am sure that you don't want to hear me rambling on any more. Sooo glad to have found this website though. From past experience, I am a firm believer that it is better to talk to people who understand what you are going through so I am so grateful for all of your replies.

Take Care

Helen

[cinziaParticipant]

Hi everyone,
I live in Australia but there are no forums I can join there. I have been reading your posts and they do fill me with optimism. I have MM with the added complication of amyloidosis. I am 47 years old and have been experiencing symptoms for over 2 years but no doctor would view my symptms holistically. My swollen ankles were treated with diuretics, the swelling in my throat resulted in the surgical removal of a submandibula gland, my hair loss was seen as alopecia, my fatigue and breathlessness not treated. With the help of a brilliant haematologist, I was finally diagnosed in Oct 2011 and biopsies re-examined from the surgery and the scalp (previously I wa stold everything was normal but now amyloid has been detected in all biopsies). At first I was confused and then a little angry. I am on CDT which is taking its toll but getting good results thankfully. I have good days and bad days but long to feel normal again. Last week I had a heart mri as the transplant specialist won't consider the stem cell transplant unless my heart is 100%. Apparently patients with amyloidosis behave unpredictably to the harvesting and transplant process. I don't mind admitting that I am scared – scared of the sct and of the future. Does anyone on this forum also have amyloidosis? Can anyone let me know what to expect with the sct? Has anyone not needed the sct and had good results without it? My family have been amazing – husband and 2 kids (23 and 14)and I dont know what i would have done without them. I do however feel that i must stay upbeat for their sakes, even when i just want to cry. It must be so hard for them to watch me go through this. Sorry for rambling on – I have so much to say and don't know where to begin. I'm grateful for this forum. 🙂

[eveParticipant]

Hi Cinzia from Australia

I found you post in the middle of old post,so people might miss it.If I was you I would post on related illnesses more people will see it,start your own posting:-)

Any way welcome to the site,every one on here will help you all they can,there are people from different countries,so do not feel like an outsider.

I cannot tell you about SCT,as my husband is just approaching this ,we are wondering about alternatives to SCT when we go to London,they will give us all the info.There are people on here who have not had SCT and are doing well,there is new treatment coming up all the time.

Things will get better,try to take one day at a time,and remain positive,its a long roller coaster you are on and you are going to have your low times,but by the sounds of it you are getting to remission on CDT,so its sounds all good news.:-D
Hope this is some help.Eve

[cinziaParticipant]

thanks Eve – I have started my own post. Hope your husbands SCT goes well – its been confirmed taht its too risky for mine to go ahead. I am taking much comfort in reading other people's stories and everyone's journey is different. I am also going to London later this year to see friends and relatives – are you going there to for tests, etc?
I hear they have an amyloid scanner which is not available in Australia but I have no idea how to access this service.
Thanks again for taking the time to respond to me. Take wonderful care.xx

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