[duskParticipant]

Sorry to hear of your relapse, it is always a shock when you go through ‘the mill’ and feel things will improve. But MM is just totally unpredictable, even for those of us who feel well for a time. Everyone keeps telling me how well I look and how positive, but I think that is my get on with life personality and fight the system if yo have to- it does give you energy!!

I would like to know more about your dental stuff as I am having to make a decision about this, after expert assessment. Unhapp with what has been proposed and my own dentist ( and hygienist I see 2x yearly)is not in clear agreement. Post me privately if you feel it is better.

 

Dusk

[andygParticipant]

Hi Helen.
Yeah we’re back from our trip to Greece. Had a good time the weather wasn’t fantastic but it was good enough and not too hot! Already booked for a trip back in September as long as I stay healthy.
I had an appointment at maxo facial before we went and it was confirmed I have osteonacrosis of the jaw. Though all was deemed necessary was just good oral care. I also had an appointment yesterday at the trauma department re my spine. Got the fear of god put into me about compression of the spinal cord and then was told I’m ok at the moment – phew – got to go back in 6 months for an MRI and another consult!
Really glad you had a fantastic time for your ahem 60th? 😮 can’t be true, in London and sounds like were treated really well 🙂
Get some more trips booked and party.

Every day is a gift.

Love Andy xx

[HelenParticipant]

Dear Dusk
I’ve not had any dental work so I can’t say what is best from personal experience but I do know that if you are on a bisphosphonate, especially Zometa, invasive dentistry is to be avoided at all costs if possible, to prevent osteonecrosis of the jaw. Any extractions should be particularly avoided for a few months after zometa. I was advised to have my teeth checked before starting treatment, to regularly have my teeth checked and to use a mouthwash as well as all other teeth cleaning appurtenances to prevent any infection arising while on chemo.

Dear Andy
Good to know you’ve had a good holiday and are planning the next, I fancy Italy later in the year…. Must put more effort into that….
What are they planning to do to your back next? Was the kyphoplasty not enough?

…….as for being 60.. Well I’ve decided to stick at 48 !! and as long as my children start to lie too I’ll be fine!
Have a good time at the info day next Saturday – I’m really sorry to miss it.
Love Helen

[bandityogaParticipant]

Hi Helen

Nice to hear you had a lovely 60th birthday and all the family were good to you. I had mine last year when Ian was in hospital. My daughter treated me to 3 days in Nice and my son gave us vouchers to use at Gleneagles. It was a real treat.

Hope you are doing well.

Maureen x

[HelenParticipant]

Hi Maureen
Thanks ..it was a lovely birthday, spoiled by steroids a bit but overall great fun and lots of treats.
Hope Ian is well?
Love Helen

[andygParticipant]

Hi Helen
There’s nothing planned for my back at the moment. We got warned about spinal cord compression and the need for speed of treatment if I get symptoms of it.
My last MRI showed some more damage to a couple of vertebrae including one I had kyphoplasty on. The radiotherapy I had earlier in the year has relieved the pain I was getting.
The consultant noticed damage to a vertebra in my lumbar area which will need to be monitored too. That probably explain the pain I get there :-/ hmmm wondering if it is more painful now he pointed it out lol.
I got my latest PP result yesterday 11.25 that’s the lowest they’ve been since diagnosis! I’m starting to believe that Pomalidomide is working 🙂
I hope you’ve made progress in booking your trip to Italy. If not why not!

Every day is a gift

Love Andy xx

[HelenParticipant]

Hi Andy
I hope your back holds out so you escape further surgery, it’s just another worry!. I’ve not booked Italy yet, got back from very lovely wedding on Monday and off to Cornwall in 3 weeks. Got Amsterdam booked for December (planning ahead despite everything!) and looks like we might have to wait til September for Italy. I want to go to Vienna too I just don’t know how I’m going to fit them all in!
Good to see the info day went well, I’m sorry I missed it…. Who is Maggie?
Love Helen

[andygParticipant]

Hi Helen.
I hope my back holds out too.
You seem to have the rest of the year all sorted for trips away. We’ve not got anything organised till September. Which will be another week in Greece if everything goes to plan.
Steph has cut her hours down and now works a 4 day week.
Oh I went to the opticians the other day and got told I’ve a cataract forming in one of my eyes!
Maggie is one of the staff from MyelomaUK she recognised me from my picture on here :-0

Every days a gift

Love Andy xx

[VickiParticipant]

Hi Andy

Just read how low your pps are…..that’s great isn’t it. Sorry to hear about your back troubles. Keep a close eye on that eh…..Colin and I had stepped outside the mm bubble for a while but it seems his light chains have risen from 110 to 220 so we were told to start mentally preparing! Here we go again!

I so hope your drugs are starting to work for you! Is there any chance of an sct with them getting very low now?

All the best you are an inspiration!

Vicki and Colin x

[andygParticipant]

Hiya Vicki
I wouldn’t worry about a one off raised reading. There’s loads of reasons why that could of happened from Colin’s illness to a mistake in the lab! Even if it is an upward trend it could take a long time before Colin needs treating. If Colin is feeling good and the rise isn’t causing any problems I think they’ll just monitor the situation. It’s not possible to say a reading of xxxx triggers treatment because as we know everyone reacts differently.
I’ve nearly finished my 6th cycle of Pomalidomide now and so far so good. I see my consultant on Friday for my monthly reveiw hopefully she’ll be smiling.
As far as SCT goes I’m not sure if it’s on the cards. It was ruled out due to the number of different treatments I’d had hammering my bone marrow so much that I’d never be able to produce enough stem cells. Pomalidomide seems to be a lot gentler on me though and all my bloods counts have improved. I’m no longer neutropenic most of the time and my taste buds have turned up again. So maybe my bone marrow has improved.

I do hope Colin’s last reading was a rogue reading and you are able to step outside the mm bubble again for a long time yet.

Every day is a gift

Andy xx

[HelenParticipant]

Hi Andy
Sorry this is such a belated reply, no excuse really! Except the steroids! I’ve now had 3 months of high dose steroids…..each month takes longer to recover. I go to find out next week what happens next…. Light chains still rising and I’m very tired. MRI shows no change since last one and back pain is under control but as you say the painkillers do make driving impossible sometimes.
All 3 of my sisters were tested and none of them match well enough for Allo so that’s another avenue closed.
I got to Cornwall and had a super holiday, still hoping to go to Italy next month but not booked it yet.
Take care of yourself
Love Helen

[bandityogaParticipant]

Hi Helen

Ian is also on high dose steroids with revlimid, he only started this treatment on Monday and so far so good. A bit short tempered but I take myself off for a walk.

we also went to Cornwall for a week’s holiday at the end of July. We were in a small place called Hayle just outside St. Ives. We had beautiful weather and I loved it. Who needs to go abroad.

Hope you get treatment sorted out and get those pesky light chains down.

Love Maureen x

[HelenParticipant]

Hi Maureen
Thanks, hope Ian does well on the Revlimid. I had it as first line treatment and was on it as maintenance after SCT. My next one will be Pomalidomide. High dose Steroids are just awful, I’m dreadful on them …I’m probably best left on my own I’m so snarly!
I love Cornwall ..we stayed near Padstow and just ambled round the beaches every day, can’t beat it, even when it’s raining.. I don’t know why I don’t live there!
Love Helen

[bandityogaParticipant]

Hi Helen

We stopped in Padstow on the way home and had lunch in Paul Ainsworth , superb. I also loved a little village called Marizion near St Michael’s Mount and Mousehole . Bought the Mousehole book for the grand children.

We are off to London on the22nd to spend a few days with my daughter.

Consultant thinks Ian’s FLC will show no sign of change until after 2nd cycle. He is on 25mg of revel7mid and 40mg of dex, 4 days on, 4 days off. Did you have the same treatment and how long did it take to reduce FLC?

Hope you are well.

Maureen x

[HelenParticipant]

Hi Maureen
I had Revlimid in 2011, right at the beginning with dex and cyclophos, it worked well and got me to zero in 4 months. Then I had SCT, relapsed after 14 months on 40 mg Revlimid maintenance daily. – treated with Velcade, Dex and cyclophos which also,took me down to zero again. 2nd relapse after 6 months took me to May this year, I’ve been on high dose steroids 40mg for 4 days then 24 days off, it takes the light chains right down but they come back each month to a bit higher each time. It is just a holding treatment before Pomalidomide starts as there isn’t much left if that doesn’t work.
We went to the same restaurant… It is very nice. I know Marazion too, it’s all lovely
Have a good time in London next week
Love Helen

• This reply was modified 9 years, 8 months ago by  Helen.

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