Hi,
I’ve been on Zometa for five years without any side effects and actually have reduced back/rib pain from the drug.
After relapsing in Oct 2015, I commenced VCD for eight cycles and in April 2016 I noticed a possible ulcer in my upper palette. After visiting the dentist, it appears I have some bone or tooth growth erupting through the palette. The bone/tooth continues to grow and I use mouth wash together with bicarbonate toothpaste to try to limit possible infections. I saw the hospital dentist who suggested a wait and monitor approach. The additional growth could be as a result of Zometa, but because the
drug is quite new, this is a fairly new field for doctors and dentists.
The thought of OnJis worrying. On doctor’s advice, I’ve stopped Zometa because as others have said the drug stays in your system for years. Personally, after suffering from three collapsed vertebrae in 2010 without any warning and other various bone lesions, I would like to recommence the drug in the future to try to prevent further bone damage. Perhaps a discussion is necessary with my doc in three years time, but possibly at a reduced rate of three monthly in order to reduce the risk of any problems.
I hope you manage to sort out the issue with your doctor Susie.
Regards Jan
Hi Linda
It’s good to read you have been having bone strengthening infusions for the last eight years, which have also helped to maintain your myeloma levels. I hope your levels remain low for a long time to come.
The extra bone in my upper pallet might be tooth rather than bone growth. However the amount of bone/tooth being exposed is slowly enlarging and moving position. It’s just a case of watching and monitoring to see what happens. Trying to avoid infections in the pallet is top priority.
The pain from my collapsed vertebrae is usually controlled with the use of fentanyle pain patches, together with daily tramadol tablets. However, I cannot lift any heavy items, undertake activities such as gardening, sport or even household chores such as vacuuming or ironing without triggering pain in my ribs and back. I’ve learnt to live a less active life, rest when necessary to try to manage the usual fatigue from myeloma. Do you suffer with much pain from your collapsed vertebrae?
Jan
Hi, You are right, there are so many different treatments available for myeloma which is good news but can be confusing. If you have a look at the information on this site, there are some useful fact sheets available about what each specific treatment involves. Probably a better suggestion would be for you to speak to the myeloma nurses from Myeloma UK help line who can personally answer your specific questions. Jan
Hi
You have both certainly been through a lot over the past 14 years. I think it’s terrific news that your husband gained 14 years of remission from his transplant, but can totally understand your shock when the cancer has returned especially when you thought the cancer was curable. I would suggest you find a specialist myeloma consultant to advise on the best treatment path, particularly as treatments have advanced so much over the past ten years. There have been good results from second stem cell transplants. My first sct gave me five years of remission and I m now on chemo treatment which will be followed by a second sct. The Myeloma UK nurses on this site should be able to help and advise you both. Attending a local myeloma uk information day is another useful way of finding out more about myeloma, treatments, trials and any local support groups.
I hope you manage to sort out the best possible treatment plan for your husband.
Jan
Hi, I’m really sorry to hear that your husband’s kidney functions are out of range and as a result Zometa has been stopped. You always will be concerned when you have to stop taking a drug which provides bone strengthening benefits and possible anti myeloma properties, but it’s important your husband’s kidney functions are working within range.
I started on monthly Zometa infusions when it was first approved for myeloma NHS patients around 2011. I was told Zometa should be used for a maximum of two years as recommended in America and Europe. There have always been concerns that prolonged use might cause side effects such as jaw bone problems. Over the years, I have noticed that this drug is also being used for bone strengthening in breast and prostrate patients. I presume it’s still early days as regards use of this drug for two years or more and any possible side effects.
I stopped taking Zometa in Febraury this year following a small area of bone erupting through my upper palette. However, my dental consultant thinks the bone might be tooth rather than jaw bone. It will be monitored for the next few years, because even with Zometa being stopped the drug can remain in our bodies for many years.
I would like to resume Zometa in the future due to it’s bone strengthening properties, especially after experiencing three collapsed vertebrae in 2010. In America some patients are prescribed a reduced dose of once a quarter. I would also like to know whether bisphosphonate tablets are an alternative and whether I should now be taking vitamin d or calcium supplements.
I hope your husband’s kidney functions improve once the Zometa has been stopped.
All the best. Jan
Hi Jan
In addition to the useful information on this site, there’s also some interesting forum posts on The Myeloma Beacon website where individual myeloma patients have outlined their personal sct experiences.
Depending on your hospital’s policy on sct procedures, you might find some minor differences such as: * The high dose chemo of cyclophospamide not being used in the preparation for stem cell harvesting.
Some hospitals just use GCFS daily injections for approximately five days and if these don’t
produce sufficient baby stem cells, then daily plexifor injections are an option;
* To ensure your body is fit enough for the sct, you might be asked to undergo a variety of tests such
as lung function, Eco scan of heart, ecg, kidney function tests, PET scan;
* Either a Hickman line in the neck or PICC line in the arm is inserted to assist with administering
the daily drugs whilst you are in hospital, which saves being constantly injected. The line has to
be flushed on a weekly basis. There are some detailed You Tube videos online which show you what to
expect with the insertion of these lines;
* The time between the harvesting of your baby stem cells and being admitted onto the relevant
hospital ward for the sct appears to vary from a couple of weeks to two/three months depending on
bed availability, fitting in all of the relevant tests, pressure on the ward from emergency
admissions, length of sct waiting list, etc;
* Usually you receive the high dose chemo of Melphalan on your second day of hospital admission,
followed by the return of your baby stem cells on the third day. Some hospitals leave one or two
days inbetween the Melphalan and return of your stem cells;
* If your hospital has air filtering across all of the ward, then you might initially be allocated a
bed on a shared ward, before you are moved into a single room if and when necessary;
* The length of stay in hospital depends on how quickly your bloods recover, whether you are still
suffering some side effects such as nausea or raised temperature. The average stay appears to be
around 14 to 17 days. After your hospital admission, this is followed up by regular check up visits
to clinic to monitor your bloods and recovery. The 100 day check up after your sct identifies your
myeloma levels to determine whether the transplant has been successful. However, some patients do
experience further reductions in their myeloma levels after this 100 day period;
I hope this helps to provide you with some further information. Everyone’s sct experience tends to differ depending on the level of side effects which you suffer from the high dose chemo and how you handle the emotional aspects of the procedure, particularly the isolation in hospital as well as the months of recovery afterwards.
Jan
Hi, That’s good news about your husband trying a different pain medication. Let’s hope it helps with making the pain more tolerable. There’s nothing worse than constant pain. Don’t forget to discuss the matter with your consultant, because your husband might need another MRI scan to ensure there is no further bone damage. I would also ask your consultant for pain management advice, because he will have more experience about which types and dose of pain drugs work better for bone damage.
Many thanks for your best wishes.
Jan
Hi,
It’s worth mentioning the pain to your consultant in order to ensure there is no further lesions or fractures. Perhaps pain medication is necessary for a period of time to help relieve the pain. However, it might just take a little while to improve especially after what your husband’s body has been through during the sct process.
After three collapsed vertebrae, four months of cdt followed by an sct in 2010, my bone pain in my back continued to cause me problems for some 18 months afterwards. I was taking tramadol and using fentanyl patches, but the pain was still very intense. I had to use a walking stick and felt I was bending forwards quite a bit because trying to straighten my back caused too much pain. I couldn’t sit for any periods on hard chairs. We had to change our settee, dining table/chairs and bed in order to try to improve my comfort and to get the right support for my back. However, I was sitting around quite a bit following the sct due to fatigue, nausea and bone pain, my consultant advised me that until I became more fully mobile during the day, then my back pain would remain. He was correct. Once I gained more energy after the sct and started to increase my activity levels, the bone pain became more contained with the pain relief. But even six years post sct, I still have quite a bit of bone pain particularly if I try to do too much. I can’t lift items, or carry out household chores or garden, otherwise the pain is too intense.
I hope your husband’s pain gets better as he recovers from his sct. I’m due my second sct next week and hope my bone pain doesn’t increase again. I’m certainly not looking forward to the nausea and fatigue. Certainly after the harvest a couple of weeks ago, I had intense back pain for two weeks.
All the best.
Jan
Hi Andy
Hope you have a great, relaxing time. The sunshine will certainly boost your vitamin D levels. Hopefully your current treatment will still be able to contain your myeloma levels.
Jan
Hi Maureen,
I’ll be thinking of Ian on the 17 May at his next consultant’s visit, because my next visit is the 16 May. You always tend to worry a little before these visits whilst you wait for your myeloma levels. Hopefully Ian’s light chain levels will remain stable for a long time yet.
In preparation for my sct, I visited my dentist for a general check up and clean. The dentist noticed the first signs of ONJ, with a small piece of bone starting to protrude through the roof of my mouth. I thought it was an ulcer following the chemo. However a ct scan has revealed bone growth beneath the gum by the side of my upper back teeth. I now wait to be referred to a specialist at the dental hospital. I remember Ian had problems with ONJ. Did he need treatment, or is it being monitored on a regular basis? I’ve been on monthly IV Zometa for four years which I presume has caused the ONJ. The advice on the American myeloma sites appears to suggest no particular surgical interventions with the bone growth, because this can cause more problems. However keeping infections from occurring in the mouth and bone appears to be the number one priority, with recommendations to use a daily mouth wash, together with a baking soda toothpaste.
I remember during my first sct, I had so many mouth sores following the strong chemo. Although the mouth sores healed quite quickly, it took my gums three years to fully recover according to my dentist. I’m not sure what the infection risks are like for patients with ONJ undergoing sct? Something else to worry about and some more appointments at the hospital.
You must be so looking forward to your holiday in Bermuda which is only a few weeks away.
Jan X
Hi Maureen,
Hope your trip to Copenhagen went well. My son quickly recovered from his tonsillitis op with only a minor scare with some bleeding when the scabs started to come off. You tend to forget how quickly you recover when you are younger. He managed to sell his England football tickets within hours on the B’ham City football site and quickly used the money to book a future England game later this year.
I underwent stem cell harvesting last week and thankfully managed to collect 3.15 million cells, which is more than I collected in 2010 and thankfully sufficient for another sct, now planned for the beginning of June. Due to my previous difficulty in 2010 with extracting sufficient stem cells, this time around prior to harvest, I was given two days of plexifor, alongside four days of Gcfs injections. I certainly benefited from advances in myeloma drugs, with the plexifor obviously working to enhance the release of the stem cells from the bone marrow. But as usual with strong chemo drugs, my body reacted to the plexifor resulting in 3 to 4 days of constant nausea and vomiting, which made me feel really rough, especially when combined with the tiredness of travelling to and from hospital for three days and the hours on the harvest machine for the two days. However, it’s all worthwhile in order to try to achieve more years of remission without drugs.
It was so reassuring to read Ian’s light chain results were 500 prior to sct and are now greatly reduced, with him now being in remission. When mine increased to just over 300 following cycle six of VCD at the end of March, I was concerned about potential further increases. However my last recent test showed a reduction to 220. Let’s hope the levels remain low between now and the sct. I’ll certainly be thinking of you both in Bermuda during June when I’m in hospital for the sct. I know where I would rather be.
Regards Jan
Hi, Since being diagnosed with myeloma 2010 following three collapsed vertebrae, I find that I suffer with terrific pain in the top part of my shoulders and back. I’m on pain patches and tablets to help. But, I did find the shoulder pain greatly intensified when I was sitting around in a chair for hours, or propped up in bed whilst recovering for months after my sct. My consultant advised the shoulder pain would improve when I became more mobile. He was right, but it did take over 18 months to slowly improve.
I’ve just gone through stem cell harvest for two days spending over six hours in a recliner chair without much movement due to me feeling unwell and nauseous. The back and shoulder pain afterwards has taken a week to show some improvement.
It’s worth while discussing the matter with your consultant, especially as we all tend to worry about extra aches and pains when suffering with myeloma. I hope the pain eases shortly.
Regards
Jan
Hi, I know how you are feeling with the peripheral neuropathy. It’s definitely diccult to cope with. I began to have slight tingling in my feet after the first week of Velcade, which gradually got worse by the end of cycle one. The volume of my Velcade was reduced in cycles 2 to 6, but the tingling changed to numbness and pain in my lower legs. The bottom of my feet can feel like sponge. When the weather is cold, the pain becomes worse. At night appears to be when the pain is really bad.
On my consultant’s advice, I started taking vitamin b6 and b12 on a daily basis. Hot baths help, as well as wearing bed/thermal socks and an electric blanket when my legs are cold at night. I use a fentanyl patch for my bone pain, which also helps with the pain and I increase my tramadol tablets when required. I was offered gabapentin for pain relief from my consultant. My pain in my legs and feet has subsidised a little, but I’m not sure whether it’s because the weather is a little warmer or that I’ve finished Velcade a few weeks ago. Unfortunately I couldn’t add thalidomide to my treatment because I had a numb patch on my leg from this drug which can also cause peripheral neuropathy.
There is an information sheet on this site covering the subject, which together with advice from myeloma beacon website, also suggests we try magnesium oil and cocoa butter rubbed into the legs, alpha lipoic acid, folic acid, vitamin E, fish oil and omega 3, multi b complex tablet, exercise, acupuncture, massage, reflexology, relaxation, tonic water and prescribed gabapentin.
Let me know whether you have any success with any of the above. Apparently the pain can take months before it gets better and sometimes unfortunately it doesn’t improve or symptoms can become more intense months after treatment has finished. You must be relieved to be through your sct. Have you passed the 100 day mark? Best wishes for a speedy recovery.
Jan
Hi Maureen
Hope all your bags are packed and ready for your wonderful break in Copenhagen. Our youngest son is at home following his tonsillitis operation last Friday. He is coping well, but apparently the time for infections or bleeding is five to seven days after the operation. After much discussion, he has only just reluctantly accepted that he is not well enough to go to Wembley tomorrow night to watch England play. The tickets were purchased as xmas presents.
I have a date for the stem cells to be filtered from my blood on the 12th April for up to three days for six hours per day. Last time in 2010, the maximum length of time per day was four hours. Unfortunately, there was no earlier date and I have to wait to see whether this procedure is successful before a sct date can be booked, which looks to be late May. My main concern is that if my light chains rise too much before my sct date, then it’s back to chemotherapy treatment. With only three weeks off chemo over Christmas, my light chains doubled from 150 to over 300. Let’s hope my myeloma is in sleep mode for the next few months.
Enjoy your time together in Copenhagen.
Jan X
Hi Maureen
To be able to celebrate Ian’s 60th birthday in style with friends and family, must be so rewarding and enjoyable, especially after his recent set of good blood test results. Long may his remission continue, particularly after his tough time during treatment. I hope you both have a wonderful time in Copenhagen, as well as your holiday in Bermuda. I’m nagging hubby that we need to take more holidays following my current treatment, however it’s hard because he is still working and restricted to the amount of time off from work. It’s also hard when his company have been so good to allow him the flexibility to take time off to accompany me to hospital appointments which will
come thick and fast during the forthcoming sct process.
Jan X
