[sanParticipant]

Hello, i have some lovely news that i wanted to share, Mum, Dad and I went to see the Consultant today to get the bone biopsy and blood results and yippee we have been told that she is now in remission 😀 i was really not expecting us to get such lovely news, Mum had two cycles of RCD before she became jaundiced and the trial was stopped, her liver is recovering well too now and so there may be options for the future when needed so it does not seem so dark now, thank you Ellen who i spoke to today as i felt that i may need something up my sleeve if the Doctors did not give us options, what do i know! everytime i think that i might know what might occur it seems to be quite different and i certainly try not to second guess now. Mum needs some dental treatment as her tooth has partially broken and it appears that when you are on a bone infusions there could be a rare complication, before any invasive dental treatment the infusions need to stop for a period before and after extraction so please check with your team if this applies to you too, just for info, love to all San xx

[jmsmythParticipant]

Hi San

Great to hear you news – well done your mum 🙂 when we were told frank was in remission – it took some time to take it in. Frank needed treatment on his teeth and although he was off Zometa for about 3 months the consultant said dentist was not to do the work and she sent him to the School of Dentistry.

Please give your mum my best wishes and to keep it up 😀
Love Jean xx

[sanParticipant]

Thank you so much Jean and Frank for your good wishes i don't think that Mum can believe it yet! as you say it will take time, she is 77 in 12 days and we are having a celebration on two fronts 🙂 , gosh its hard to think that even dental treatment is complicated with this illness :-/ hope that Frank is doing ok and that you are keeping well too, take care love San xx

[PerkymiteParticipant]

Hi San, See Dai's post under treatment: "Normality? Not on my watch!"

Kind regards – vasbyte

David

[dickbParticipant]

Hi San, really good news about your mum, she's certainly doing well at 77. I know my dentist here was aware of Myeloma and the consequences of carrying out work but it's best to be safe than sorry. Just enjoy the good news and lets hope there's more to come.
Richard

[sanParticipant]

Thanks Richard, how are you doing treatment wise these days? hope that all is well with you too, San x

[tomParticipant]

Hi San and not forgetting Mum

A well Done Mum its going the right way, am well pleased for you all 😀
As for Teeth (and mine are big) I had an early check up on mine prior to getting my Zometa and was pleased to be told all was well 😀

Big Hugs to your Mum
Love Tom Onwards and Upwards xxx

[VickiParticipant]

Hey San that's absolutely great for all of you 🙂

It's so nice to hear good news, so well done mum and all 🙂

Vicki and Colin xx

[mhnevillParticipant]

Hi San

Great news about your Mum.

I had to have some roots out. I had to stop Zometa for three months before and three months after. I also had to have the work done at the Dental Department who prescribed me antibiotics and monitored me afterwards. It all went fine and I had no adverse effects from period off Zometa.

Best wishes to your Mum.

Mavis

[sanParticipant]

Thank you Mavis for the info, and Vicki and Colin for the good wishes,hope that all is well with you all too, i feel so lucky to be able to access the lovely people on this site and the super myeloma nurses gosh it helps so much, love San x

[dickbParticipant]

Hi San,

Treatment here in Germany has started to pick up again, after all the hasle with PAD then Revlimid and the raised Enzymes in my Liver, they have started me on VCD. I've had just velcade and Dexy in July and now ramped up. Seem to be coping with it so far and I go in today for a Velcade injection. The Dexy really doesn't agree with me and my wife knows when I'm really bad with it. SCT is back on the cards, when I don't know. I've reduced the amount of painkilers for the bone pain. Just take Nuvominsulfon twice a day, 1 in the morning and 1 before bed. I was told by one of the nurses that in the heat I need to take upto 5 litres a fluid a day, the fluid intake also has a bearing on pain levels as well. I was lucky enough to have been diagnosed before I suffered kidney damage or severe bone damage but my wife is always reminding me what I can and cannot lift. It's embarrasing when I have to stand there as she picks up a full crate of bottled water and takes it to the car. She's a few inches shorter than me and slightly built. I feel I have the strength still but am just not allowed to take the risk.

As for life out here, we are having one of the best summers I can remember, it's averaged +30 degrees for over 4 weeks now, just a bummer having MM at the same time. They are very strict here about working whilst on Chemo, We had to almost plead insanity before they agreed I could do 6 hours voluntary work for the German Red Cross. That begins next week, again no lifting but helping out in an old people's home doing crafts and entertainment, We'll see how long I last once they hear me sing!

The local MM support group is very good, very friendly. Once a month we meet up and we each have to say how we are getting on. Very nerve racking giving a little precis in German but they are very patient and they say they understand. It all helps with the confidence in speaking the language and building up a very good social network. The German Grammer is very hard but like most things Teutonic, they follow specific rules. I just haven't sussed out the rules yet.

So that's where we're at, After initial knock backs, moving forward again. We know there are more downs heading our way but the Sun is shining, I am taking my bike out with our daughter and we're enjoying the summer holidays. Roll on Autumn.

[sanParticipant]

Good news Richard it sounds as though its all moving in the right direction, i recall reading your intial entry and things have certainly moved on considerably for all of us here, gosh don't we learn fast with this illness. Great to hear that you are enjoying the lovely summer in Germany with your little one, its been so lovely here too but a little cooler. It is hard to see your lovely wife lifting heavy objects when you used to do it but you really have to take care now and i so hope that you can have your SCT soon. Good luck with your voluntary work you will soon have those folk smiling i am sure 😎 all good fun! best wishes San x

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