[michelleakitt29Participant]

Hi all

Mum had her check on Wednesday at clinic, and was phoned by the hospital yday to go in today for an infusion, this is for bone strengthening and should help with the pain. Andrea specialist nurse phoned me last night for a quick chat about it, seems like a good thing, but i have not heard of them before. Has anyone else had them (sorry cant remember name think it began with R) she is going to have them every 4 wk.
All in all she is doing well, with PP at 4, I asked about the tiredness and she said as Mum is doing really well on Revlimid, so they may reduce the dose, as tiredness is a side effect of the drug!

with much love michelle x x

[GayeParticipant]

Hi Michelle – sounds like your Mum is doing well with Revlimid so let's hope she continues for a long time with it. I was interested that Mum has been recommended an iv bone strengthener. I am going for my first one today but it is called pamidronate or something similar! Let's hope it reduces the pain for both of us! I really wish her well. I love the way you care for your Mum and I am sure she does too. To use that phrase – onwards and upwards. I think Myeloma UK should be changed to Onwards and Upwards UK with Tom as our Chief Onwards and Upper. Food for thought Tom!

Love, Gaye xx

[PerkymiteParticipant]

I cannot help with information on your mum's pending "infusion".

I take Loron – Sodium Clodronate every day to "bind the bones and stop calcium leaching off them" or at least that is what I think it is for 😀 I have been taking these for at lease 18 months now. No side affects as far as I can ascertain.

kindest regards

David

[michelleakitt29Participant]

Thanks

Gaye that could may well be it!! was not really taking in what she said, which is not me……got lots going on at the minute, Not that that should be an excuse really!! I am hoping to get up to the hospital today, so will try and get the proper name for it. Ha ha yep Onwards and Upwards certainly should have been the new name. Please let me know how you get on with your infusion too, very interested to find out more one these.

David she does take something once a wk on a thurs, think that is something to do with her bones too.

She does have a lot of bone damage, so anything that will help is taken with open arms.

with much love michelle x x

[brochoParticipant]

Hi Michelle I am surprised this has not been offered to your mum before given that she has a lot of bone damage .I was on Parmidronate for over 3 years and it certainly helped with bone pain , I always knew when it was due The infusion is ok just means spending a couple of hours on a drip once a month , sometimes it can be a little painful for a couple of days till it kicks in . I have recently been changed to Zometa which does the same thing but has been shown to work well with other drugs in reducing myeloma levels So pleased to hear mum is still doing well As for being a member of the snoozy club tell her its very exclusive!! love Bridget x

[tomParticipant]

Hi Michelle

I am on Zometa infusion every four weeks to help my iccle bones 🙂

Side effects? dont hink I have any Lol, but did feel like flu symptoms at the start but now nothing;-)

Honest all through this i wonder if i am getting real stuff as i seem to sail through it all:-D

(hope i aint speaking too soon lol)

My next one is next Thursday so lets hope that one sails through as well 😀

One Onwards and Upwards Tom xxx

[ronParticipant]

Hi Michelle

My wife was diagnosed with mm only a month ago. At first it was thought that the pain in her back and sides was due to crushed vertebrae and cracked ribs (that is what the X-ray showed) and it was only after having a CT scan and blood test that the mm showed up. She had a pamidronate drip to strengthen her bones even before the mm diagnosis was confirmed, and has had one more since. Absolutely no side effects and the procedure is just as described – a couple of hours sitting in a nice comfortable chair with a tube attached to your arm. Let's hope it achieves the desired result!.

Best wishes
Ron

[michelleakitt29Participant]

Hi All

I can now confirm that the infusion Mum had was Zometa, I am sure thats not what the specialist nurse said, but hey ho I was definately in a non listening mode yday!! It took around 30 mins all in all as she had already had her blood tests on wednesday, she is back on magnesium cos thats low, but other than that she is well, and managed to eat all her dinner at wetherspoons were we went for dinner after her infusion (and managed to stay awake lol).
Thank you to you all for you messages, it really means alot, love you guys so much for all your input.

with much love michelle x x

"Onwards and Upwards" Tom, i so cant help putting that x x

[DebsParticipant]

H Michelle,

I'm on zometa too…..was fine for the first 24 hours, had flu symptoms and aches like i've never known for the next 24 hours, and was then fine. And when I had my second infusion last month I didn't get any side effects at all.

I hope that your mum avoids the side effects, but from what I know (not v much!!) zometa has had a pretty good write up.

Debs x

[BADGERParticipant]

Hello Michelle

hope mum is ok with the infusion I have had pamidrinate for the last eighteen months once a month it made my bones ache at first but after a while I have felt no effects at all I have mine over an hour and a half once a month hope your mum keeps well
Love JO:-D

[comfortablynumbParticipant]

I have the Zometa thing every two months.

I go to my local hospital and am weighed/ measured. Then a drip goes in – it is only a small bag and it is complete within about half an hour. I got a bit of a backache the first time, but since then, it's been fine. They told me to watch out for gum problems whilst on it, as holes can appear leading to bone problems in the jaw and tooth trouble. i must say, I have had sensitive back teeth since starting Zometa.

After SCT, etc…it's a doddle.

🙂

[tomParticipant]

Hi Michelle

Am sure your Mum will be Ok on the Zometa, I have another one Tomorrow, Our Grandson loves to take the plaster off when i get home as he says "wont hurt Granddad" so I have to be brave 😀

And John and all others that are on Zometa I have been told that whilst taking it I should use "Colgate Duraphat 2800" I bought some and now I have used it cant buy it as I needed a prescription :-S will have to ask Dr if he will give me one 🙂

Hope all is well with you all and Catch you all soon.

And michelle you can use it anytime "Onwards and Upwards" Tom xx

[KeithH17Participant]

Hi Tom…where did you get your toothpaste from,bet it was'nt Tesco's.
Perscription??? surely not!!
I started Zometa last Mon and I have my 3rd shot of Velcade Friday so I'll ask the nurse about it then.
I've heard of this before from a Dental Surgeon that addressed one of our support group meetings.

Thank's Tom…Keith.

[tomParticipant]

Hi Keith

Lord if only I read this this Morning 🙁 as i forgot to ask Dr Jalihal about the toothpaste :-S , still aint got my memory back lol

Yes i was told about the toothpast by the lovely Pamela Buchanann who is on here and the under 50's Pamela is a dental hygenist and hubby is the dentist, so how good will that info be 😎

As I said had my Zometa this morning and all went well 😎 cant wait till next month lol.

Tom "Onwards and Upwards"

[michelleakitt29Participant]

Hi All

Mum didnt seem to have any side effects at all, she is still much the same, the tiredness seems to be getting worse not better tho!!

No point in telling Mum about the toothpaste she only has 3 of her own teeth and the rest are falsies lol, but she would much prefer it if the last 3 just fell out.

much love michelle "Onwards and Upwards" x x

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