Hi Jason,
Because we all react so differently to the various drugs, it is very difficult to predict the actual length of your treatment period or the specific number of treatment cycles you will have to undertake. It all depends on how well you respond to the chemotherapy and your tolerability to the drugs.
My first treatment in 2010 consisted of four cycles of CDT followed by an stem cell transplant (SCT) which took a total time of 5 months. However my relapse treatment in 2015/16 took 8 cycles of VCD followed by an Sct which took a longer time of 12 months. The relapse treatment took longer due to a number of factors including a short break required due to low blood levels, another break due to flu virus, peripheral neuropathy, my myeloma taking longer to respond and waiting lists for STC.
The aim of your VTD chemotherapy will be to reduce your myeloma levels by as much as possible prior to the STC process. At the end of each cycle of treatment, you meet with your consultant to monitor your bloods, myeloma levels and your progress, together with discussing how you are coping with the treatment and any side effects you are experiencing. Your consultant will then decide on the best way forward which may be altering your treatment/dose of medications/length of each cycle/number of cycles, etc.
I hope your treatment is successful.
Best wishes
Jan
Hi,
I had my first Sct in August 2010 after four cycles of cyclophosphamide, dexamethasone and thalidomide (Cdt) which gave me a good five years of drug free remission until my first relapse in the autumn of 2015, when I completed 8 cycles of velcade, dexamethasone and cyclophosphamide (Vcd) followed by a second Sct in September 2016.
Similar to Tony’s experience, I also managed the second Sct much easier than the first mainly due to my severe nausea being better controlled both during my chemotherapy treatment prior to the Sct and during the Sct. As Tony stated, I think it also helps when you know what to expect during the process. I was certainly less anxious, better prepared for the side effects and how to deal with recovery process.
Going through two lots of chemotherapy treatment has made me realise that I do tend to suffer from various side effects such as nausea, sleepless nights together with mood swings from the steroids, fatigue and peripheral neuropathy in my feet/legs. Undergoing a second Sct has given me the chance to be drug free again during any remission period gained from the process.
I hope all goes well with your husband’s treatment.
Take care.
Jan
Hi Susie
If you have a look at the Myeloma News section on this site, there’s an article released on the 23 November 2015 stating Imnovid (Pomalidomide) is now available for myeloma patients in England who have received at least three prior treatments including Velcade and Revlimid, and whose myeloma progressed while taking their last treatment.
Regards Jan
Hi Chris,
I’m sorry to read that you are having to start treatment again after your recent SCT. You’re certainly not expecting too much as regards remission time, because when we all go through treatment we always hope for as long a period as possible before the myeloma becomes active again. Unfortunately the amount of time we remain in remission following a SCT still remains difficult to predict.
From the myeloma blogs and comments on the American Myeloma Beacon website, it appears that some patients reduce their monthly Zometa infusions after two years to quarterly or bi-monthly infusions, but only if their myeloma is under control and no further bone damage is evident. However if your scans are showing your myeloma is currently harming your bones, then perhaps at this stage you need to consider continuing with your monthly Zometa infusions to help prevent any serious bone complications or painful fractures. As you say, it’s an important issue which you need to fully discuss with your consultant, because it’s weighing up the risks and the benefits associated with using Zometa long term on a monthly basis v reducing the dose at this stage during your treatment plan.
All the best. Jan
Hi Ian
Great news about your progress during your VDT and sct, especially as your side effects appeared minimal. Hopefully your myeloma levels are also good? You sound as though you are recovering well to be undertaking mile walks.
I remember my first infusion of Zometa causing me flu like symptoms with aching bones, but these side effects completely disappeared in the subsequent infusions. Although you did not experience any side effects to Zometa prior to your Sct, perhaps when it was reintroduced after the Sct process, your body might have reacted differently? I know my body’s reactions to certain drugs has changed since my first Sct, I can no longer take Septrim as I now appear to be allergic to this antibiotic, which I took without any problems for six months prior to my first Sct. It might be a case of seeing what reactions you experience over the next few infusions of Zometa, or you could ask for the Zometa to be administered a little slower to help reduce any side effects.
Having gone through two Sct’s myself, one being around the same time as yourself in Sept/Oct 2016, I wonder whether some of the symptoms you mention might be as a side effect to the Sct which can take a good three to six months recovery period. After my last Sct, I am still easily breathless after short periods of activity as well as some irregular heartbeat, even just climbing the stairs too quickly can result in shortness of breath. From my previous experience of my first Sct, aged 53 years, I know it’s going to take me 12 – 18 months to be able to undertake basic levels of activity without any problems. We all react so differently to the chemotherapy drugs with varying recovery periods.
When I was diagnosed in 2010, my MRI scan revealed various skeletal lesions and collapsed vertebrae. I was extremely grateful to receive Zometa when it became available on NHS around 2011, in order to help reduce the activity of my body’s bone destroying cells and slow down/prevent further bone destruction. However, if you haven’t experienced any bone lesions or fractures and if your myeloma is under control/not active following the Sct, then the decision to continue with your Zometa I suppose is less straight forward especially when you weigh up the toxicity of the drug and potential side effects. I received Zometa for around 4 years on a monthly basis, but stopped because of exposed bone growth in my mouth in 2016. My consultant has only seen two cases of ONJ, but I suspect because it’s a fairly new drug then more cases might present themselves as patients take Zometa for longer periods of time. It’s trying to establish the lowest effective dose and period of treatment, especially as the drug can remain in your body for many years after stopping treatment. In America, there appears to be a two year limit on monthly infusions of Zometa, which are sometimes followed by quarterly infusions, which is probably the best way forward.
I hope you are able to resolve your questions with your consultant and decide whether to continue with Zometa, or Pamidronate.
All the best.
Jan
Hi Brian and Peter
Brian: Your myeloma levels have certainly reduced significantly following your treatment. You must be so relieved and hopefully they continue to improve in the coming months. My lambda levels were 1900 at the start of VCD in Oct 2015 (all other levels normal) reducing after 8 cycles to the achieved 90% reduction target to proceed to Sct (190). After Sept Sct they were 43, then 54 in December 2016, which is very similar to the levels I achieved after my first Sct in 2010. Fingers crossed they will now only increase at a slow rate in the coming years.
Peter: It’s good to read your experiences of chemo treatment. You have been really fortunate not to experience many side effects during chemo. It is remarkable as to how everyone reacts differently to the various mixtures of drugs. I hope your PN in your hands has disappeared. You were right to assume my side effects improved after my initial 4 cycles of CDT, but they were helped by 4 days in hospital for fluids and 3 bags of blood which considerably boosted my energy levels. Fatigue was the biggest issue after my first Sct, which was not surprising after the ongoing nausea and weight loss during CDT prior to Sct. I slept for 12 to 14 hours a night for a good year. It took six months before I had some energy to leave the house to socialise. But after my second Sct, my fatigue has been far less, probably because my overall health was much better during chemo prior to Sct and with previous experience of the process, i knew what to expect. But I still find I have to sleep for 10 – 12 hours a night. PN in my legs and feet comes and goes, at present mainly triggered by the cold weather.
All the best.
Jan
Hi Louishenry
Many thanks for your reply. I”ll certainly discuss again with my Maxillofacial doctor about shaving off the exposed bone growth, but it might have to wait some months to see whether my current bone growth stops, which will also give my immunity levels chance to improve after my recent second sct.
Jan
Hello Louishenry,
I found your post to be very interesting due to the similarities which I am facing with exposed bone growth in my mouth due to Zometa. My maxillofacial consultant is reluctant to remove my exposed bone whilst it is causing no problems, because he feels the bone might be still growing and therefore he would rather wait and monitor the bone growth to see what happens. It’s interesting to see the different approaches between the specialists.
Would you mind if I asked you a few questions? How long have you been on Zometa before you noticed the bone growth? Where about is it located in your mouth? When the bone was scraped away was the skin stitched over the area or did it heal by itself. Are you currently on chemotherapy treatment and what are your immunity levels like at present. How quickly was further treatment required again and can you feel further bone under the skin in the same area?
Thanks in advance to your reply.
Jan
Hi Brian, Peter and Adrian
I completely agree that the side effects of treatment vary depending on the drugs used and everyone reacts in different ways. We all have to individually decide on the best way forward after taking into account all of the available advice and information which we require to make a decision. As you state Brian, it’s a gamble as to whether the treatment will work. You have outlined your rationale very well for your decision to try VTD. Hopefully the addition of Thalidomide will reduce your light chains further and achieve a complete response without much PN. What are your light chain levels now and what were they originally when you started Velcade.
Peter my treatment has been as follows:
– Diagnosis March 2010;
– Four cycles of CDT April to July 2010;
– First SCT in August 2010;
– Five years of remission;
– Relapse treatment October 2015, 8 cycles of VCD followed by second SCT September 2015.
You asked whether the side effects which I suffered during my initial treatment in 2010 were due more to the SCT rather than the CDT. Although both were difficult as regards coping with side effects, I think the ongoing nausea with vomiting throughout the four cycles of Cyclophosphamide was a difficult long period of time when I couldn’t hardly eat anything or drink much resulting in most of my weight loss, low iron levels, dehydration and fatigue. At least during the SCT, the nausea only lasted three weeks. The recovery period after SCT can be long, but any achieved remission period can be without chemo drugs which also cause me the constant up and downs in energy levels due to steroids, the sleepless nights, chemo brain and fatigue, which combined with bone/rib pain from collapsed vertebrae can be hard work. Thankfully anti emetic drugs have improved since 2010 and my relapse treatment was much easier with the nausea under control.
Peter, as far as I understand Velcade is the NHS recommended path of treatment at first relapse and the the percentage of patients experiencing PN has been significantly reduced since Velcade has been administered via subcut injections. Also Velcade is apparently considered to be an effective treatment for light chain myeloma. However because I had experienced some low level PN on the 4th cycle of CDT, which cleared up as soon as Thalidomide ceased, the more cautious approach was to prescribe VCD initially and if PN did not develop, then change to VDT. Thalidomide had previously worked well during my initial treatment to reduce the light chain levels. Also if I could be treated without Cyclophosphamide, this would reduce the risk of nausea.
Adrian, I hope you decide on you best course of action to take which suits you and your myeloma.
All the best
Jan
Hi Sonia
I’m sorry to hear about your husband’s experience with the Maxillofacial clinic and having to wait three months for NHS funding. Hopefully all of his dental work has been successful and he continues to be pain free without any further dental problems.
I’m not sure whether Pamidronate is any different to Zometa as regards the side effects relating to ONJ. Your consultant or the helpline at myeloma uk would be able to advise much better. I think the tablet form of bisphosphonate is an alternative, but I’m not sure how effective it is compared with Zometa for bone strengthening. After having 3 collapsed vertebrae and several bone lesions identified in 2010 prior to my myeloma diagnosis, I know I need to closely monitor the situation. Reading the myeloma beacon website, it appears myeloma patients in America take Zometa for a max of 2 years on a monthly basis, then reduce the frequency to once a quarter. If the additional bone growth in my mouth remains stable, I would like to think I could resume on Zometa on a quarterly basis in order to try to prevent any further damage to my bones.
Jan
Hi Brian
Since it’s been a little while since your posts, therefore I’m not sure whether you have since changed your treatment to Vtd or whether you have made a decision about a sct.
I was diagnosed in 2010 aged 53 and went through 4 cycles of cdt followed by a sct. I didn’t question the treatment plan, because I found the diagnosis as a complete shock and at that time it was presented as the best way forward to achieve a good period of remission. Thankfully I obtained 5 years of drug free treatment before relapse in Oct 2015 when I went through 8 cycles of VCD followed by a second sct.
Prior to myeloma, I rarely visited my GP and had no experience as to how my body would react to strong chemo drugs. Some individuals sail through the process, but 4 cycles of cdt followed by an sct caused me severe nausea and vonmitting for months and months, resulting in 5 stone in weight loss, as well terrific fatigue, bed sores, constipation, urinary infections, skin problems. Collapsed vertebrae prior to diagnosis was an additional discomfort with ongoing back and rib pain plus mobility problems. The thalidomide caused numbness and loss of any sensation in the upper part of my one leg.
When my myeloma relapsed in 2015, my consultant wanted to prescribe Vtd rather than VCD, but was reluctant due to my previous history of neuropathy when taking thalidomide. It was the right decision because after just one cycle of VCD, PN problems started in my lower feet which despite lowering the velcade doseage, also developed in both feet, calves, thighs and hands. Other side effects were low due to better management of the nausea, but I still didn’t have much energy whilst on chemo and the Dex nights were many hours without sleep. Fortunately the PN has significantly improved since the chemo stopped, but in this cold weather I’m still wearing bed socks, warm trousers, padded coats, thick duvets at night with pain relief on some days for the throbbing feet.
The plan for the relapse was VCD followed by another sct. This time around, I was extremely reluctant to go through another sct, but I realised my body doesn’t react well to long term chemo, therefore if the second sct could offer me a few more years without drugs then this had to be my first choice of treatment. Without the second sct, I would have been prescribed a change of chemo because VCD was only managing to reduce my myeloma levels and as soon as I stopped the chemo, the myeloma started to increase again.
My second sct was more manageable than the first, with my recovery period showing signs of being quicker than the first. My myeloma levels have reduced and have remained fairly stable for the last 3 months after the sct. Fingers crossed it will be sometime before I have to resume chemo.
Hope you are well on your current treatment.
Jan
After a successful sct in 2010, I started on monthly zometa a year afterwards and was still on the drug in 2015 when I found a small hard lump under my upper palette. The dentist suspected a floating piece of tooth, but a scan revealed a bone growth underneath the palette skin alongside two of my upper molars. Zometa was thought to be the cause of the additional bone growth, therefore the monthly infusions were immediately stopped, but the drug can apparently remain in your body for years afterwards.
Over the past year, the bone has slowly broken through the upper palette skin and has continued to grow but at present does not appear to cause me any problems, apart from me fiddling with it with my tongue. The specialist hospital dentist is reluctant to shave off the exposed bone and cover the area with pulling/stitching skin over the site, because if the bone continues to grow, it will just break through the skin again. In America dentists have apparently tried this solution, but without much success. The main issue with leaving the bone exposed is a possible future infection in the bone or surrounding skin. I’ve been advised to keep the area clean and monitor the situation along with my dentist.
My consultant has seen one other patient with this type of additional bone growth in the mouth, which occurred when they were taking chemotherapy. However their skin grew back over the bone when the chemo stopped and their immunity improved. With this in mind, I’m hoping mine might be a similar situation because the bone growth protruded and broke through the palette following six months of VCD after I relapsed in 2015. My second sct was completed in September 2016, so hopefully as my immunity improves this might help the situation?
I would be really interested to know what your biopsy reveals Michael and what further action, if any, is taken. In England Zometa has only been available since around 2011, therefore any potential long term side effects are just starting to show in patients, which presents the doctors/dentists with challenges as to how to successfully treat any issues.
Jan
Hi Chris, I’ve recently completed the max 8 cycles of VCD followed by my second sct in September 2016. I tolerated the Velcade well. My nausea seems linked to cyclophosphamide rather than velcade. However I did suffer peripheral neuropathy in both of my feet and legs after cycle one, therefore the doseage of velcade was reduced slightly from cycle 2 onwards which helped to relieve the pain. My light chains dropped from 1900 to around 150 after 3 cycles, but when I came off treatment for two weeks due to low blood levels, my light chains started to increase again. Therefore I resumed treatment for a further 3 cycles before harvesting of stem cells. But on due date of second sct in June, I was admitted into hospital with summer flu, which again saw my light chains increase resulting in two further cycles.
After my sct, my light chains were 43 and 56 a few months later, which is very similar to my numbers after my first sct in 2010. Now it’s monitoring the levels over the coming months. I hope Velcade works well for you. I found CDT far worse as regards side effects than VCD.
Regards Jan
Hi Andy
I thought your newspaper article was good and certainly helped raise awareness of myeloma. I hope your recent operations on your head have managed to remove the necessary suspicious areas and that your scalp has recovered well. Have all your results come back OK? You were on my mind when my 97 year old dad spent three hours last week at a local dermatology clinic having two areas of skin cancer removed under local anaesthic from his back and behind his ear, with a skin graft taken from his shoulder to patch the wound behind his ear. At least he wasn’t sent home with sponges stapled to his head like yourself. He’s had many operations over the past 20 years to remove skin cancer patches around his head and upper body, which have thought to be been caused when he served in the navy during World War Two and got burnt time and time again on his exposed skin when he spent many hours on deck aboard mine sweepers in the Med. Thankfully all of the ops have been successful.
Although your myeloma levels are gradually increasing, you must be really relieved that pomalidomide has managed to control your myeloma for years, especially as during that time more trials and drugs become available. MUK 8 looks like a promising combination of drugs. Reading through the slides from the recent myeloma info days, the appears to be quite a few MUK clinical trials currently being planned. I hope your meeting with your consultant goes well this week.
All the best. Jan x
Hi Helen,
It’s so good to hear from you and read that your myeloma is still under control with your current drug regime. Long may this continue. With yours and Andy’s good experiences of pomalidomide, I was really pleased to learn the drug has now been approved by NICE. It seemed so unfair that it was available in Wales and Scotland but not England. You have certainly been busy with moving house and doing up the holiday accommodation. Our loft is still full of many boxes of various items which we moved with us over twenty years ago and have never got around to sorting them out. My mom found that a daily zinc supplement helped her occasionally regain some of her sense of smell and taste which she lost for over ten years following a cold virus, but be careful you don’t overdose on the recommended daily amount.
I resumed treatment in the autumn of 2015 when my light chains reached 1900. After completing 8 cycles of VCD followed by my second sct in September, my light chains are now 44 rising slightly to 54 this month which is a great improvement and similar to the reduced levels which I achieved following my first sct in 2010. Hopefully they will only rise slowly over the coming years. I just need to regain my energy levels which took a good 12 to 18 months after my first sct. It’s no fun trying to do all of my Christmas present and grocery shopping online.
Take care. Love Jan x
