[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

[michaelcParticipant]

Hi,I have Multiple Myeloma and Lymphoma. I also have Osteonecrosis of the jaw. My right-side bottom lip and some of my chin are nerve-damaged due to that part of the mandibular nerve being breached by the disintegration of my jaw.

Last night I 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,
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]

[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]

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.

[michaelcParticipant]

Hi Jan,
I was a little alarmed on first reading this; but I appreciate you posting it, as none of us really know what to expect. I realise that excess bone growth continues; and have had a tiny piece drop off myself, but didn’t realise that such a large piece as yours can detach itself. It may not be quite as solidly attached as I suspected. Having had some chiselled off, I feel re-assured that it can detach itself sometimes….”every cloud etc.”

I hope you are well in yourself, and tolerating the treatment.

I am now four and a half years on from my diagnosis of Lymphoma and Multiple Myeloma… I continue to enjoy good health and thanks to the weather a healthy looking tan. I am not currently on any medication at all.

Love and best wishes,
Michael x

[michaelcParticipant]

Hi Jan,

Well done.  Don’t be too hard on hubby! ….Good days/ bad days.

Those steroids are tough!

All went well at the hygienist today. I did explain the possible problems again, and she was most sympathetic and helpful, and subsequently very gentle.

Kind regards,

Michael

[michaelcParticipant]

Hi Mavis,

Glad to hear that you find things funny… well done you!

I doubt if even the saddest person will be into BRONJ porn, so doubt if your photos will become viral :-))

I’m going to see the dental hygienist tomorrow for the first time since having my BRONJ. I have been super careful to notify them to be gentle.

I wonder if anyone knows how long Zometa stays in your system, (I have heard about 5 years) and if BRONJ still persists after that?

Best wishes,

Michael

[michaelcParticipant]

Hi Jan,

Sorry to  hear about your readings. I hope you are coping okay (have we a choice?)

very best wishes,

Michael

[michaelcParticipant]

Hi,

It’s a damned nuisance having BRONJ, but at least we’re still here.

I have a full set of top dentures, and used to have partial bottom ones. Obviously, I cannot wear the bottom ones any more, as they would rub against the lower gum/bone.

I have some exposed bone, which has increased lately, bit my Maxillo specialist is leaving it be.

I did have bone shaved and chiselled off initially, when they drilled out a tiny square sample for testing.

So I am managing to eat a bit like a rabbit, having no useful molars. I brush with an extra soft toothbrush, use mouthwash morning and night… and try not to traumatize the gums … no crisps or sharp chips etc.

So, apart from that; to say I have Lymphoma AND Multiple Myeloma, I am doing great after being diagnosed in 2013.

Good luck to all you fellows out there… keep smiling… or maybe just a grin!

x

Mike

 

[michaelcParticipant]

Hiya lynda 1

Don’t despair. I have Multiple Myeloma and also Lymphoma.

I had chemotherapy and stem cells harvested in early 2014.

The skin on the soles of my feet just peeled of in sheets… quite alarming at the time. I REALLY struggled to walk… the podiatrist could do nothing to help as he said it was nerve damage. I took Gabapentin 300mg x 3 daily which eased it. Thin soled shoes crucified me. I could only walk short distances.

However, with perserverance and time… They DO get a whole lot better. I wear Pavers shoes, which have air pockets in the sole (unfortunately they cannot be re-soled) and are brilliant. My feet have improved beyond belief, apart from first thing in the morning. After half an hour or so, I am more or less “normal”… the pins and needles and tenderness have subsided and by the afternoon, I am grand. So please do not despair. Hope this goes some way to re-assure you both.

Best wishes,

Michael

[michaelcParticipant]

Hi,

Well, the maxillo facial specialist has confirmed that I do have Osteonecrosis of the jaw.

It has healed up very well following the operation I had to take a biopsy and generally clean up the excess bone growth on my lower gum. I am delighted to say that the CINDAMYCIN antibiotic has got rid of the infection that was causing pain.

I expect to resume my Zometa infusions at the end of the month (I’ve had a 6 month break during this) and it will be 3 monthly now, instead of monthly.

I have no mouth pain and continue to clean my teeth as normal and use a mouthwash. I avoid certain foods like crisps as they could jab into that area and am conscious of getting anything lodged in the hollow that remains.

Unfortunately, I will not be able to have lower dentures made, as they would irritate too much and cause problems.

I continue to feel well and happy.

Best wishes to all,

MichaelC

 

[michaelcParticipant]

Hi Jan,

Thank you very much for your reply and information. Sounds like you must have been one of the first in the UK to have the Zometa infusion.

I will certainly update when I receive the results from the biopsy.

Kind regards,

Michael

 

[michaelcParticipant]

In my case, my lower dentures were becoming uncomfortable, so I visited my dentist to get new ones. He discovered “something” in the gum, and was due to extract it. Fortunately, my  wife reminded him of my ongoing treatment at Christies. He subsequently looked up Zometa to discover it was a Bisphosphonate, and decided not to touch it and referred me to an Oral Specialist at the Hospital.

I have always kept my records up to date at the dentist; but it would appear that SPECIFICALLY telling your dentist that you are on a BISPHOSPHONATE is the way to go.

My January 2017 infusion of Zometa was cancelled at Christies, but will resume in 3 months.

Best wishes to Karen and Susie. Let’s hear from anyone else out there that can tell us what to expect.

I strongly suspect that I have B R O N J as all my markers for the Myeloma are fine (Light Chains and Paraprotiens). I am concerned about further invasive work when there is not a remedy to hand.

Oh, by the way, I feel very well xx

 

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