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
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
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
Hi Susie
I think Michael is right, all of us have times when we don’t want Myeloma issues to dominate our lives, even while we cope with its consequences for our mobility and general levels of fatigue.
I also have had so many problems with the new Web Site. I can’t count the number of times I have got a new password!
I still find the Forum useful, such as when I recently diagnosed with necrosis of the jaw, (Thanks Jan!). I do hope it continues to help as many folk as possible, especially folk at the beginning of their Myeloma journey m when it is so scary.
Greetings to you all out there. Let’s keep fighting!
Love Mavis x
Hi Linda
Only just read your post. I have had such problems with logging onto the Web Site that I nearly gave up.
Your story will no doubt encourage others. In spite of Myeloma being a dreadful disease, aren’t we fortunate to have it now rather tha 15 years ago. The first two years on the Site, starting in 2010, I seemed to have lost one cyber friend after another.
Let’s all keep fighting and being grateful to all those Specialists, Researchers and individuals taking part in Trials, who together make the outlook a lot more hopeful.
All love to you. May you be celebrating in another 10 years,
Mavis x
Hi Jan
I do hope that you settle into the new drug regime and that it works to bring your PP readings down. Sympathise about the effect of the steroids. One thing I found though, is that it really helped my joint pain.
I waited to reply as I was seeing my Consultant today. My PP has just gone up by 1 to 10 in three months so no treatment needed yet, but he said I must chase the dental department up about a follow up appointment to get results of the CT scan. No Zometa for the time being. I am hoping to have a very long break from it. I asked the question “if it stays in your system for 5 years why do I need to keep on taking it?” I don’t think they know the answer as it is all so new. I think in the States they only do 2 years. It will be interesting to see if my PP goes up faster now I am off it.
Do hope things work out well for you. I just thank a God that there are so many more options for treatment than there were when I was first diagnosed.
Hi Michael
Glad all went well with the hygienist. I don’t know about you, but I think I am going to become fanatical about mouth hygiene now!
Love and best wishes to you both.
Mavis x
Dear Jennifer,
Welcome to this site. I am sure you will find it helpful. I certainly did in the early years of my diagnosis in 2010. You asked about staging of the disease. One thing I have learnt is, it doesn’t really matter. This is a very individual disease and everyone reacts differently to the treatment. I am so sorry your dad is really struggling. Have they suggested changing his drug regime?
I haven’t had an SCT and I am still here to tell the tale. I am 73.
If you are going to post again I suggest you go onto one of the other strands as it may mean you get more answers,
Best wishes to your dad and to all the family.
Mavis x
Hi Jan and Michael
Thank you for taking the time to reply to my post. It is good to know that others are cheerfully coping with the Google’s this horrible MM throws at us.
I was diagnosed with Oesteonecrosis. I have to say that on this occasion the NHS has been marvellous to me. In less than a fortnight from my visit to the Dentist, I was seen by the Consultant, was xrayed twice, photographed, prescribed antibiotics and mouth wash, had my denture altered to relieve pressure, had blood tests and had a CT scan! I can’t believe how quickly things moved.
My upper gums already feel more comfortable although I think I will have to have the bone shaved to stop another ulcer. I am now awaiting another appointment so they can share the outcomes of the various tests.
JAN, good to get news of you. Like me, still battling on. I do hope your PP level is behaving itself so you can escape the next level of treatment for the time being.
MICHAEL, I really do sympathise with your problem with your lower jaw. I feel lucky now that I couldn’t get on with my lower dentures so have never used them! If I had, maybe I would also be dealing with problems on my bottom jaw. Keep fighting.
Two amusing things happened at the Dental Department. First, two trainee dentists were able to look at the growth in my mouth, and I was asked to sign to say that the photos they had taken could be used in teaching materials! Fame at last! Obviously now so many more of us are living longer with MM dentists need to be aware of the possible side effects. I go to see the Oncologist in a fortnight so will see if he says I should resume Zometa. I suspect he will because of the sad condition of my bones.
Best wishes to you both and all out there.
As friend Andy says “every day is a gift.”
Mavis x
Hi Jan and others
I have found your posts very helpful. I have been on Zometa from about 2012 – four weekly until three cycles ago when I ask my Consultant if I could come off. I had read it stays in the system and was finding the logistics of getting to hospital for the infusions more and more difficult. I had one break of three months so I could have a tooth root removed.
I have been on eight weekly infusions for last three cycles. I have a reduced dose because of kidney damage.
Two months ago I realised I had a problem under my denture at the site of an ulcer. Eventually went to Dentist last week to be fast tracked to Orthodontist Specialist tomorrow. In the short time I have been waiting I can feel bone growing in my gum and my jaw is very painful. I feel sure it os ONJ. I hope they can plane it off and hope I don’t get caught up in any funding problems.
Best wishes to all.
Mavis
(Diagnosed 2010. CDT 2011 in complete remission till about six months ago. PPs now slowy rising.)
Hi Helen,
Thanks for the information. I’m glad that Thalidomide is working so well for you like it did for me. At the moment my PP is settling around 10 so thankfully no recommendations for treatment yet. Have also persuaded them to let me reduce the Zometa infusions to eight weekly. I just don’t want to be tied to hospital appointments I’d I can help it. As you say, that is the benefit of CDT that it is tablets.
Gordon has been diagnosed with arthritis which we find surprising as it came on so suddenly. Thankfully Gabapentin has dealt with his shoulder and neck pain, but he is still having extreme difficulty with his hands. Still I am hopeful that things will improve.
Have managed to book a four day break in Bridlington, in June so something to look forward to. Also it is our 59th wedding anniversary in August so both must survive till then! I am 73 this week and feel very grateful to have reach this age,
Keep battling on and enjoy your new home.
Lots of love.
Mavis xxx
Hi Helen
Happy New Year to you too. I was exhausted after Christmas having done two big services with help of crutches and perching stool!
Our lives have been made doubly difficult because Gordon isn’t at all well with heart failure and hand and shoulder pain which we have eventually found out is a boney spur putting pressure on a nerve in his neck. We have been struggling but don’t want to bring in more help as it ties you down so. Well at least it takes my mind off me!
After my last hospital visit, when my PP results weren’t there, the Dr promised to send them on to me, but, of course, they haven’t arrived. This means when I go in February my results will be a month behind.
I’m interested you are on CDT. Did you have it when you were first diagnosed? I did and it brought my PPs down to zero in six months. When I need more treatment I have been wondering if they will let me have it again. My hair thinned and my taste was affected, but at least it was in tablet form. How are you getting on with it?
I think you are wise to book a holiday. Because I have problems sleeping in a bed we don’t know what to do. It is our a Golden Wedding Anniversary in August, but I think we will just plan a couple of small celebrations here. We hope to visit Kate and family again,in Luxembourg, in early summer but this noe depends on Gordon being up to it as well as me!!
Still, as Andy says “every day is a gift” so we battle on.
Lots of love to you Helen.
Mavis xxx
Hi Ceri
Keep fighting for your mum. It’s the last thing you can do for her. Have you thought of involving the hospital Social Worker?
Lots of love.
Mavis xx
Dear Clover
I am so sorry to hear that this awful disease has taken your dear Dad after he gave it such a mighty battle.
I know it must be even more poignant to loose him at this time of year which is supposed to herald hope.
May you find comfort in many happy memories. Death never has the last word, love does.
Love to you and your family.
Mavis x
Hi Helen, Andy and everyone else out there!
A happy and peaceful Christmas.
We are so fortunate to still be here aren’t we. I always feel so grateful to all who took part in earlier Trials and to all the researchers.
I am still just on Zometa infusions. Wanted to come off them, but Dr agreed to 8 weekly instead of 4 weekly. He said this was for prophylactic reasons. PP continue to rise, but slowly.
We won’t let this beat us yet. In spite of very restricted mobility I managed to celebrate and preach at our Midnight Communion. Probably the last time at a Festival, but hope to continue one monthly in ordinary time.
May 2018 be a peaceful and hopeful one for you all.
Love
Mavis xxx
Hi
Just wanted to say it isn’t the end if you aren’t able to have a SCT. It is nearly 7 years since I was diagnosed. I had CDT and the went into resession. My paraprotein is now gradually rising, but it is good for me to know there are so many new drugs on the market now. Options are improving all the time.
I have a monthly Zometa infusion for my bones and for me it is a miracle drug.
Do hope things go well for you.
Regards.
Mavis
