[janwParticipant]

Hi Michael

It’s certainly good news to read that you are in good health with four and a half years of remission without drugs. Long may this continue.

Since starting my third line treatment of iRd in May, I’ve spent quite a number of hours sitting in the garden in the shade reading a variety of novels, mainly due to the relentless fatigue from the drugs which isn’t helped by a couple of nights per week without sleep from the 40 mg of steroids. Other side effects have been nausea, mouth sores, constipation and peripheral neuropathy, however I’m really encouraged to see my light chains have reduced from 3000 to 397 after three cycles of treatment. The dose of drugs will be reduced once the light chains have stopped decreasing, which should help with some of the side effects.

I was certainly thankful when the large piece of exposed bone unexpectedly detached itself, because I was getting concerned about the actual size of the growth, risk of infection and it’s interference with my speech. The consultant at the Maxilliofacial clinic appears happy with healing process. I now wait to see whether there is any further growth over the next few years.

Love Jan x

[andygParticipant]

Hi All,

I’m a bit late to this conversation. Not been on the forum for a few years.
My ONJ started about three or four years ago with a little ulcer on my gum went to my dentist and she prescribed steroids. It didn’t help and the next visit there was bone exposed and she referred me back to my consultant who arranged for the Maxilliofacial team to have a look. They confirmed ONJ and recommended a leave it alone policy with close monitoring and recommended very good oral hygiene. After approximately two years and after two bits of dead bone had dropped out my mouth my gum healed over and I was declared ONJ free with no loss of teeth. I’ve just got a big dent on the inside of my jaw now. Who knew the jawbone is one bone that doesn’t regenerate. Still not back on Zometa or any other bone strengthening drug.
Guess I was lucky because I’ve heard some horror stories about ONJ in the day unit.

Every day is a gift.

Andy xx

• This reply was modified 5 years, 8 months ago by  andyg.

[michaelcParticipant]

Hi Andy,
Thanks for sharing your experience.
I didn’t know two things from your message:

1. That the Jaw bone is the only bone that won’t regenerate
2. That you can be diagnosed BRONJ free

it was also interesting that you too had bits of bone detaching by themselves.
All VERY interesting.

Cheers,
Michael
PS. does anyone else find it difficult to navigate back to a reply to a posting? ie. you cannot reply until you are logged in. Once you have logged in you have to find the topic to reply.

[mhnevillParticipant]

Hi All

It has been helpful having this discussion. (I got lost for a while because of the difficulty of getting logged in. Hopefully this has solved itself now.)

I am still waiting to see Consultant about my two CT Scans, but feel all is OK as the piece of bone in my upper jaw just came loose and detached itself rather like a dead tooth root! My gum has healed up well and all seems fine. It is good to be able to eat properly again!

Like all of you I am wondering about going back onto Zometa. It certainly has done its job for me in terms of strengthening my bones. I had a nasty fall three weeks ago, my crutch just slipped on the floor taking me with it. I wrenched my shoulder, but thankfully, no breaks.

I think I’d be happy to go back on it either 8 or 12 weekly. I will see what Cancer Specialist says when I see him at end of month.

JAN, I do hope you are settling down into the new treatment regime. Is it a six month course of treatment? What were your PPs when you started treatment. What made them decide it was time?

Lots of love.

Mavis x

[mhnevillParticipant]

Hi!

Should have said how good to hear from Andy again and a helpful post. Interesting you are not back on Zometa, Andy? How was that decision arrived at.

So glad you are still battling on with us.

Love Mavis

[janwParticipant]

Hi All

How strange that Mavis, Andy and myself have all recently experienced spontaneous detachments of our exposed bone growths with our gums thankfully healing afterwards without signs of infection or inflammation. I am concerned as to whether my bony protrusion on the upper palate, combined with my long term use of Zometa for five years, are risk factors for oesteonecrosis developing in my upper jaw in the future. Hopefully there will be no further additional bone growth in my mouth, but this needs to be monitored especially as Zometa remains in the body for 5+ years after stopping treatment. When to go back on Zometa is a big question especially if I am susceptible to ONJ.

Hi Mavis – After suffering 3 collapsed vertebrae in Feb 2010, I was finally diagnosed with myeloma at the end of March 2010 when my light chains were 2300. My PPs have always been normal, together with all of my other blood results, kidney functions and no additional bone pain. After my first and second SCTs, my consultant stated that he didn’t want my light chains to go above the original figure of 2300 just in case the myeloma activity at this level caused any further bone issues. Therefore when my light chains reached 1900 in 2015, I started my first relapse treatment of VCD and the same thing happened in April 2018 when my light chains reached 2000 although when I started the second relapse treatment of Ixazomib, Revlimid and Dex (iRd) the actual level had climbed to 3000. I’m currently on my 4th cycle of iRd and getting used to the sleepless nights on Dex, together with the crash afterwards and the constant fatigue. Nausea is controlled by a strong anti nausea patch and my light chains are currently around 625, but in the week off chemo they do rise by around 200 which shows I need the drugs to control my levels. I’m on this chemo regime until it stops working and then it hopefully there will be another available regime to try.

I hope you manage to sort out your Zometa regime.

Love Jan

[mhnevillParticipant]

Hi Jan

Thanks for all that information. It’s strange how all our experiences of MM are different. I notice my latest Blood Request, sent with my bloods on Monday, did ask about Light Chains so when I go to Clinic in a fortnight I’ll ask for a print out of results and see what it says.

I think i’m going to try and stay off Zometa as long as possible. It’s all a balancing act isn’t it.

I’m sorry you are having problems with Dex days. However, let’s hope the treatment keeps those figures down but also allow you some quality of life.

Well, we were both diagnosed in 2010. Let’s make our first goal 10 years survival. That should give us a good chance of reaching 15 years because I read “the longer you survive, the longer you survive!”

Love

Mavis x

[janwParticipant]

Hi Mavis

We’ve both been very fortunate that our myeloma has been sensitive to treatment and we’ve managed to survive eight years since our diagnosis in 2010. I remember being given a life expectancy of 2-3 years after my first Sct in August 2010, but since then there’s been a welcome introduction of a variety of new drugs with more in the pipeline which have improved life expectancy. In Myeloma UK’s guide for newly diagnosed myeloma patients, the survival statistics for England and Wales states 47% of patients live for 5 years and 33% survive for 10 years. But I suppose these statistics also include patients who have unfortunately died early from late diagnosis, infection, late treatment, all ages and patients with high risk myeloma. I know that I have to try to steer clear of infections/virus because in the past shingles together with cold/flu virus have all significantly increased my light chain levels which tend not to return to their initial levels once the infection/virus has cleared.

My current treatment is working well with my light chains still reducing, although the fatigue from steroid sleepless nights and the chemo drugs is difficult to manage. However when to recommence Zomita still remains an issue for me now that I’m on long term treatment with high dose weekly steroids. I’ve read that high dose oral steroids for more than three months can effect the metabolism of calcium, Vitamin D and bone, which can then weaken your bones especially in the first six months of steroid use, causing possible bone loss and bone fractures in the spine and ribs. After having collapsed vertebra and ongoing bone pain from myeloma, then any further bone damage is something I would rather avoid. Perhaps this is why in America they currently recommend the use of bisphosphonates if you are on myeloma treatment, but suggest 3 monthly infusions for those myeloma patients susceptible to ONJ. Something else to discuss with my consultant, but I’ll wait until I’ve completed my first root canal filing next week.

I hope you remain in remission for many more years.

Love Jan x

[peterlParticipant]

Hello Mavis and Jan and all,

It’s good news that you’re both progressing well There’s obviously bound to be several bumps along the road, but with new and novel drug therapies [and the combination of different types – that oddly may not appear to work on paper (according to my consultant) – but practically are very useful treatments], I think there’s every chance for optimism. I’m not sure the stats regarding MM survival rates are that useful Jan, without further qualification from MyelomaUK. Because as you quite rightly say they probably contain such a miss-mash of ages, underlying and pre-existing conditions, late diagnosis… etc, that they can be viewed with a little caution!

I remember the American MM patient on the Myeloma Beacon website, who if I remember correctly, is still going strong after 19 years (of which 14yrs with drug treatments). And my old retired GP, 10 years on and again still going strong, and that together a diagnosis and treatment for prostate cancer! I know quoting these two cases is pretty meaningless in the whole scheme of things, since MM treats us all so differently, but why not have 15yrs or 20 years as your targets ladies? You may surprise yourselves.

Best wishes to everyone,

Peter

[michaelcParticipant]

Hi everyone,
I have BRONJ.
Just a line or two to say “Hang in there” …. life DOES go on despite the Osteonecrosis. It’s a good excuse for ice cream and chocolate which are just so soothing to eat. I have recently discovered the ideal toothbrush for me… which is a soft one by CORSODYL. It’s adult size as opposed to the children’s soft toothbrushes. Having quite a hole in my lower jaw, I get food stuck in a difficult place and also find the battery powered ORAL IRRIGATOR by Oral-B that my sister bought for me is invaluable. It squirts (warm) water through a jet at a choice of two different speeds. It’s all about avoiding infection, so I use an Anti-bacterial mouthwash every morning and night. Unfortunately it causes brown staining on teeth, but a sympathetic Dental Hygienist can clean it off CAREFULLY.
Hope this positive message can help someone.
I’m 5 years in since my diagnosis of both Lymphoma and Multiple Myeloma and subsequent Chemo/Stem Cell collection and Zometa.
I will be at Christies this Friday for bi-annual blood and urine tests.
best wishes,
Michael xx

[michaelcParticipant]

[michaelcParticipant]

Hi,
I’ve just been to see my Maxillo Facial consultant because I have had some weird tooth/jaw pain which has woken me at 3-4am the last 3 nights. He’s checked for infection, and there’s none there… so no need for anti-biotics.
He’s sending me to have another Cone Beam CT Scan at Altrincham.
And I have made an appointment to see my regular dentist to Xray and see if there is a tooth that requires attention.
I have also had the weirdest sensation ever of like an insect crawling inside my flesh of the lip. This is even stranger, becasue it’s an itch that won’t be scratched as I have nerve damage in my lower lip and it is permanently numb. After scratching and rubbing, I splashed cold water on it and managed to get back off to sleep. It must be a type of neuralgia I presume. I know people with MS can get this sensation. Whatever next?
Has anyone else had this?
Best wishes to all,
Michael

[michaelcParticipant]

Hi again,
Here we are … 18 months further on:

I’m pleased to report that I am still here, despite having T-Cell Lymphoma and Multiple Myeloma. Thanks to the Christie Hospital. xxx

The osteonecrosis in my jaw caused by the Zometa infusions seems to have settled down, and my gum now has a coating of skin over the hole where the necrotic bone forced its way out a while ago.

I’m still very conscious of the lack of feeling in the right side of my chin due to the nerve being breached.

good luck to everyone.
Michael

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