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
Hi Richard
So sorry to hear about your reaction to Septrin after your SCT. I also developed an allergic reaction to this antibiotic after my first SCT.
When I was diagnosed with myeloma in 2010, I had four cycles of CDT prior to my first SCT. During the four cycles of CDT I took Septrin on a regular basis without any problems. However when I relapsed some five years later, I began my second line of treatment which was VCD together with Septrin. During the first cycle of VCD, I started to feel as though my whole body was burning up from the inside, with my face going extremely red, skin starting to peel in thick layers from my feet and hands, together with a rash appearing all over my body. My consultant thought I was having an allergic reaction to either Allopurinol, Velcade or Septrin. I stopped both the Allopurinol and Septrin, but a blood test revealed my inflammatory markers were around 85, so I was admitted into hospital for monitoring and given fluids together with an antibiotic. My skin rash cleared after a few days and my skin stopped pealing. However unlike yourself, Septrin didn’t affect my white cell count or platelets. I completed the following 7 cycles of VCD without an antibiotic.
I am now on my third line of treatment which is Ixazomib, Revlimid and Dex together with the antibiotic Dapsone. I’ve just completed three cycles, but have noticed my inflammatory markers are starting to increase slightly which is being closely monitored by my consultant.
Good news that your blood results are recovering and long may this continue. Whenever you are admitted into hospital, or prescribed an antibiotic for treatment, that you are allergic to Septrin.
Jan
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
Hi All
During my second cycle of Ixazomib, Revlimid and Dex my exposed bone growth in my upper palette broke off whilst I was eating a meal! What a shock, but it definitely feels good not to have a large piece of additional bone in my mouth. Although the overall exposed growth was about 3cm in length and 1 cm wide, it appeared to be attached under the palette by only a thin piece of bone. The hole is healing well and I have a visit with the Maxilliofacial team next week. My dentist wants to keep the exposed bone for reference purposes and to use with his dental hospital teaching.
I suppose I now wait to see whether any further growth appears over the next six months because my CT scan a couple of years ago identified quite significant extra bone growing alongside the back molars underneath my upper palette.
Love Jan
It’s taken me sometime to navigate around this new site. Also I relapsed in April 2018 after my second SCT in September 2016. Currently on Ixazomib, Revlimid and Dex cycle 3 which has thankfully reduced my light chains from 3000 to 400 but the side effects of fatigue, constipation, sleepless nights with steroids and then crash days with the steroid withdrawal have been taking a little while to get used to so I haven’t been using this site as often over the past four months.
Jan
Hi Mavis
It certainly is worrying when your myeloma levels start to increase over a short period, but you are definitely right in that there are now many more treatments available than since we were diagnosed and many more in development, which is so hopeful for the future. When you get the results of your CT scan, if possible see whether you can get a copy of some of the main images to show your usual dentist so that they are aware of what’s happening in your mouth as regards any future treatment/cleaning.
Zometa monthly infusions were only approved for use in the NHS in 2011/12, which is when I first started Zometa. In America they appear to be highlighting possible ONJ issues for a small proportion of myeloma patients who have been receiving the drug monthly for 3 years or longer. Therefore with the drug being quite new, it will take sometime to see whether the number of cases with ONJ increases over the coming years, especially as it’s now being used for breast cancer and prostrate cancer patients. I wouldn’t have known I had a problem until a little bit of bone started to become exposed in my mouth. Perhaps those patients on the drug for 3 years or more should have yearly CT scans of their mouths?
I have just completed my first week on my new treatment. As usual nausea remains an issue for me and I learnt today that the anti nausea drugs which I have taken in the past, and have been effective, are not suitable for long term use due to possible negative side effects to the heart. I’ll have to trial some other anti nausea drugs over the coming months. My PN in my legs is starting to tingle and throb, but I’m hoping this doesn’t get too bad. Steroids have been reduced for next week because I was horizontal for 24hrs last week with swollen glands, severe headache and increased temperature. It’s so hard when you start a new treatment because you want it to work, but you don’t want the side effects of the drugs to be too difficult to handle on a daily/long term basis.
Like Michael and yourself, we will all be paying a lot of attention to our dental hygiene which can only be a good thing. Hopefully your myeloma levels will not increase as result of stopping Zometa, especially when the drug has quite a few years when it remains effective in our systems.
Love Jan x
Hi Michael
I hope the dental hygienist goes OK tomorrow for you.
Many thanks for your kind wishes about coping with my new treatment. If you’d asked me yesterday then I’d have said very badly due to 24 hrs of harsh withdrawal symptoms from 40 mg of high dose steroids, which was quite a shock to my system after only experiencing 20 mg of steroids per week on my previous 2 treatments. But as you say, we don’t really have a choice and I’m thankful I still have a treatment to try. My husband has learnt to keep out of my way to avoid my emotional mood swings from the steroids.
Regards Jan
Hi Maureen and Michael
Mavis, you must be very relieved to know that a thorough check up of what’s happening beneath your ulcer has been carried out so quickly and efficiently by the NHS. Let’s hope a good plan of action will be drawn up for proper treatment to help you maintain the good fit and comfort of your dentures.
Reading through some of the reports online, Osteonecrosis seems to affect some myeloma patients who have received long term bisphosphonates for three years or more. According to the American Myeloma Beacon website, there appears to be a consensus of management for monthly Zometa infusions in America to be offered for a maximum of 2 years and then reduced or withdrawn for a period of time in order to try to avoid the development of ONJ, mainly due to the drug remaining active in our systems for five years+ once stopped.
I started on bisphosphonate tablets after my first stem cell transplant in August 2010, but changed to monthly Zometa once the drug was approved by NICE around 2012. When I visited the Maxillofacial specialist in February 2015, he discussed shaving off the exposed bone but felt a watch and wait approach was advisable especially as the bone was in the upper palette rather than under my teeth. Over the last three years, the growth of exposed bone has certainly increased and it does interfere with eating, speaking and oral hygiene procedures with food continually getting trapped in-between the bone and gum, which I suppose is why mouth wash is recommended together with regular monitoring for possible gum infection.
However I’m extremely fortunate not have the discomfort and pain from an exposed bone underneath dentures which both yourself and Michael are suffering. In these circumstances at least there is the option of surgery to shave or remove the exposed bone which could be potentially curative. Although there does appear to be the need to continually be monitored to see whether gums heal over, or whether the exposed bone continues to grow or become infected. It’s definitely an ongoing problem.
Unfortunately I have just relapsed after 20 months of my second Sct. I had hoped to achieve a similar remission period of five years following my first Sct. I caught a cold virus a year last September which increased my light chains quite considerably from 100 to last month’s lelvel of 2400 and rising by 500 last week. With the myeloma becoming more active, I visited clinic last Thursday to sign up for my 3rd line treat of Ixazomib, Revlimid and Dex. I started the drugs yesterday and already experiencing the steroid sleepless nights following 40 mg dose. Fingers crossed the treatment will work and the side effects won’t be too harsh.
Best wishes. Janice x
Hello Mavis
It’s good to read that you have remained in remission since 2011. Hopefully your PPs will only rise very slowly and it will be sometime before you require further treatment. I had four cycles of CDT in 2010 followed by an SCT, but I relapsed in 2015 requiring 8 cycles of VCD with a second SCT in Sept 2016. My light chains have increased quite a bit since Christmas and I now wait anxiously for this month’s results to find out whether there is another significant increase in levels which would mean starting treatment quite soon.
I’m sorry to hear you think that you might have ONJ. I hope the visit to see the Orthodontist Specialist tomorrow will provide you with some answers, especially as you are finding the area around your gum and jaw under your dentures very painful.
Although my additional bone growth initially presented itself like a small ulcer in the upper part of my palette, a scan showed quite a large additional patch of bone growing beneath the gum almost running parallel to the roots of my upper molars. This additional bone has slowly pushed its way through the upper palette and now measures around 2cm in length and is about half a centimetre in height. Thankfully at present there is no pain, infection or sore patches around the growth. My Maxillofacial specialist opted not to shave off the additional bone growth due to possible problems with wound closure if the bone continued to grow especially as Zometa remains in your body for 5+ years.
Perhaps you can ask the Orthodontist Specialist for a scan of your jaw bone to see whether there is any additional bone growth underneath the gum which would also determine the best treatment path to ensure you are pain free and that your dentures are comfortable when you eat. Why would you get caught up with funding problems?
All the best for tomorrow.
Jan x
Hi,
I had Plerixafor the evening prior to the first day of my second Stem Cell harvesting, as well as the following evening prior to day 2 of the harvesting. I experienced some really weird hallucinations during the night of the harvesting. I raised my concern with the nurses, but apparently they had not had any other patients experiencing similar side effects. But when I looked online about related side effects to Plerixafor, there were some studies which identified patients experiencing nightmares and hallucinations relating to the drug. On a positive note, Plerixafor worked really well in resulting in the required number of stem cells being collected for a second SCT in 2015.
Jan
Hi Sarah
Steroids such as dexamethasone and prednisone are frequently used to treat myeloma patients, either prescribed alone or in combination with other myeloma drugs. They reduce swelling and inflammation and have been shown to kill myeloma cells. However steroids can cause many serious side effects, which are related to the dose and duration of use. Side effects caused by these steroids can include, but are not limited to, sweating, insomnia, mood and behavioural changes, increased energy, high blood sugar, infection, anxiety, fluid retention, increased appetite, lack of concentration. Most side effects will go away as the dose is lowered and then the drug is stopped altogether. However, if you mum has been taking the steroids for a long time and then stopped abruptly, she might experience withdrawal symptoms for a couple of months.
You mum needs to discuss her anxiety and confusion feelings with her consultant, who can review her steroid dosage, duration and side effects. Keeping a daily diary of the medication your mum is taking and noting any side effects/mood swings can be useful to see whether the side effects are linked to periods on and off steroids or other drugs.
I hope your mum’s myeloma treatment goes well.
Jan
Hi Robert
I certainly know why you are not looking forward to your second SCT, but hopefully the process will provide you with a good period of remission. I found my second SCT in September 2016 far easier as regards side effects, together with a quicker recovery period afterwards.
I am sorry to hear your peripheral neuropathy is not improving since finishing Velcade and commencing Revlimid. On the Myeloma Beacon and Living with multiple Myeloma Websites, there appears to be other myeloma patients experiencing worsening PN symptoms after using Revlimid. Hopefully your consultant will be able to suggest different pain relief for you to help minimise the symptoms.
My Fentanyl patches and Tramadol were prescribed for bone pain as a result of chronic pain caused by collapsed vertebrae just before myeloma diagnosis in 2010, but they do provide me with relief for the really painful PN. These pain relief drugs do work with my PN, however Fentanyl is an opioid which can create a strong dependancy, with some side effects such as problems with sleeping, skin itching and sweating issues. Over the years I have tried to gradually reduce my Fentanyl dose but have suffered some severe withdrawal effects as a result.
Other myeloma websites suggest other remedies for PN such as accupuncture, a magnesium supplement, Vitamin E, folic acid and a magnesium oil for topical use on your legs and feet.
I hope your consultant can find something which works for you to help relieve the pain from your PN.
Kind regards
Jan
Hi Robert
I hope your peripheral neuropathy (PN) starts to reduce now that you have stopped Velcade and currently on Revlimid. My PN has certainly improved since my 8 cycles of VCD finished in September 2016, resulting in hardly any symptoms during the summer months of 2017. However my PN appears to be triggered when the weather is cold, where as others have stated their PN symptoms are worse during hot weather. Over the last few months when the temperature has been decreasing, my feet and calves have been tingling, throbbing and painful as though needles are being stuck into the skin.
I’ve been on Fentanyl patches since my myeloma was diagnosed in 2010, together with Tramadol tablets. I’ve found taking additional Tramadol has provided some relief, together with finding ways to warm up my legs such as long hot baths, electric blanket, extra throws, thick bed socks and hot water bottle. My consultant also recommended taking vitamin B6 and B12 on a daily basis.
Lets hope both our PN symptoms reduce further over time.
Kind regards
Jan
Hi Maureen
A really worrying time for both of you. What were Ian’s light chains when he was originally diagnosed? I just wondered whether they were higher than 5000? I would certainly try to find out more about Ian’s genetic make-up of his myeloma in order to try to determine whether there is any available evidence on Daratumumbab or Carflizomib having good results controlling and reducing his specific individual myeloma. There might not be this evidence available, but in America they are certainly trying to identify which drugs work better with different types of myeloma although it still appears early days in this area. You might be able to discuss this in more detail with a specialist myeloma consultant in London via your private medical insurance. I hope you find an option to more forward with.
Jan x
Hi,
I would certainly discuss your change of reaction to Zometa with your consultant for their advice as to whether to continue with the treatment in its current format.
When I first received Zometa in 2010, I was hardly given any IV fluids prior or after Zometa which did contribute to certain side effects of dizziness and headache for a two to three days after the infusion. However when I changed hospitals in 2011, the nurses always ensured sufficient IV fluids were administered at the time of the Zometa infusion which certainly helped with the side effects. I was also advised to drink plenty of fluids for the days around Zometa. You might ask your consultant as to whether slowing down the rate of infusion from 15 minutes to 30 minutes might help reduce any side effects.
Regards
Jan
