Hi Sandy
I was diagnosed with myeloma in 2010 and similar to yourself have managed to achieve my 10 year anniversary and hopefully very soon my 13 year anniversary.
I was very fortunate that my first SCT kept me in remission for 5 years, but I quickly relapsed after my second SCT which only lasted 20 months. My light chains were rapidly rising to above 2300 after the second SCT when it was decided by my consultant in 2018 that I should start IRD which had only just become available.
In 2018, I never imagined the IRD treatment would be not only able slowly tackle my rising light chains, but also be able to keep them at a low level of around 20 for 5 years. I feel very lucky that this treatment became available just at the right time for me to try.
I think the main side effects of Ixazomib can be gastrointestinal ones with constipation and diarrhea being fairly common, together with nausea and vomiting, as well as reduced platelets. However these can be managed by your consultant with meds. The usual problems of weekly steroids do cause issues with lack of sleep and the crash days after the steroids. The hardest part is the high dose of weekly steroids at the beginning of treatment which can be 40mg, but this can be quickly reduced to 20mg. I now only take 6mg of weekly steroids. I found the high dose of Revlimid caused be quite a lot of fatigue, but again this can be reduced over time.
As others have said this treatment is tablet based and very easy to take at home without the need for hospital visits apart from a monthly blood tests followed by a monitoring telephone call with your consultant.
I hope your next treatment works well for you.
Regards
Jan x
Hi Sue
You certainly achieved a terrific period of remission following your Sct and a year of Thalidomide. I was diagnosed in 2010 and had my first Sct after 4 cycles of CDT and fortunately managed to achieve 5 years of remission. The second Sct in 2016 only gave me 18 months of remission, but then I started IRD in May 2018 which I’ve been taking for the last 30 months. It’s all tablet based which is good news with the current Covid issues and only requires a monthly trip to hospital for blood tests which are followed up by a telephone consultation with your consultant. Initially the doses for each 28 day cycle are usually 4mg of Ixazomib once weekly for 3 weeks, 25mg of Revlimid each day for 21 days and 40 mg of Dex taken once every week for each 4 weeks of the cycle. The doses are regularly reviewed as you proceed along the treatment with adjustments being made by your consultant when required.
My light chains were 3000 when I commenced IRD and they slowly reduced over a period of a year before becoming fairly consistent since then at around 20 – 30, which is much lower than my results following my 2 Scts. Initially I had quite bad nausea and vomiting during the first few cycles, but chemotherapy does tend to cause me nausea. Ixazomib can cause nausea for a day or more, but with me it’s 4 – 5 days of nausea after each Ixazomib tablet. However once the team found an effective anti nausea drug thankfully this is no longer a problem. The 25mg of Revlimid caused me fatigue, but this eased once my light chain levels were decreasing and my consultant felt the dose could be gradually reduced to 10mg. However 40mg of Dex per week was a nightmare for sleep, emotional upset and the usual crash after the boost in energy for a few days. When reduced to 20mg this helped and again when reduced to 10mg the side effects were much less and now that I’m on 4mg of weekly Dex this is fine with only one sleepless night per week. The other usual side effects for some people can be low platelet levels, reduced neutrophil levels and gastrointestinal issues. My platelets have dropped from my usual 160 level to around 60 to 80 and my neutrophils below 1. I take weekly Gcsf injections to boost the neutrophils and help the platelet levels which has worked well. For the first year I was badly constipated requiring laxatives and stool softeners, however now I suffer with no warning diarrhoea mainly during the 2nd and 3rd week of each cycle.
The first 6 to 9 months were the hardest for me when the doses of the drugs were at their highest and the side effects were difficult to cope with, however once my light chains continually reduced to a low level and the doses of the drugs gradually reduced then the treatment has been much easier to cope with. It’s the first time my myeloma levels have been consistently low, even after my two Scts my light chains gradually increased throughout my periods of remission. I still struggle with peripheral neuropathy (PN) in my right leg, but this was due to Velcade prior to my 2nd Sct. The IRD hasn’t increased the PN, but where the pain is located in my toes and foot, rather than up the calf. I still need plenty of tog rated socks, hot baths, hot water bottles, etc during the colder days/cold months.
I hope IRD works well for you.
Jan
Hi Susie
I just wondered how are your neutrophil and paraprotein levels since completing cycle 21? I hope all is OK. Do you ten to suffer with many side effects on this treatment?
Take care.
Janice
Hi Susie
How is your treatment progressing on IRD? I just wondered whether your neutrophils have recovered since March? I’m on my 28th cycle of IRD which has thankfully reduced my light chains from 3000 in May 2018 to a really good level of 20, but both my neutrophils and platelets have reduced over the period of the treatment. Although my neutrophils have always been low since the two Sct’s at around 1.4, they have reduced further on IRD to 0.8. However with weekly Gcfs injections, the platelets are now just below 3, which is the highest they have been since diagnosis in 2010. The injections have also managed to stop my platelets from dropping further.
Best wishes
Jan
Hi Ian
So sorry to hear your Lambda light chains appear to be rising whilst on Ixazomib. It’s always worrying when the myeloma levels begin to increase during treatment. I’m currently on my third line treatment of Ixazomib, Revlimid and Dex (IRD) but unfortunately because the treatment requires daily blood thinning injections, I’ve had to steer clear of taking Curcumin which apparently can magnify the effects of anti clotting medications and having your blood too thin can be dangerous. It’s something to consider if you are also on blood thinning medication with Ixazomib. Curcumin can also decrease platelet function and my platelets are steadily decreasing on this treatment from 150 to around 60 – 70.
Several months after my first SCT in 2010, I developed shingles which increased my Lambda light chains by around 400, but the light chain levels did slowly decrease a few months after the virus, however they remained slightly higher than before the outbreak of shingles. I’d experienced the same increase and decrease in light chains after a cold virus, which also slightly raised the light chain levels once the virus had cleared. After reading Margaret’s myeloma blog on Curcumin, I started taking 8 grams of Curcumin on a daily basis which I continued with for four years until the myeloma relapsed in 2015. I also continued with daily Curcumin during my second line treatment of VCD followed by second SCT in 2016. Unfortunately 12 months after my second SCT I had a cold virus which triggered the start of a steady increase in my Lambda light chains which eventually climbed from around 100 at the 12 month stage after SCT to 3000 over the following 8 months resulting in me starting IRD in May 2018.
Curcumin is definitely worth trying, but just do some research on whether it will interfere with any of the various drugs you are taking on your treatment regime.
Jan
Hi Susie
Sorry it’s taken a little time to reply, but I’ve had a bad cold which has knocked me back for some weeks. Its good to see your paraproteins have reduced really well on Ird.
For around a month before I commenced Ird in May 2018, my light chain levels were rapidly rising at a rate which I’d never seen before over the previous 8 years. It was quite frightening just how quickly the myeloma could increase its activity. During my first four cycles of Ird, I struggled with nausea and vomiting which was closely monitored every couple of weeks by my haematology team. It became apparent that during the first 3 weeks of each Ird cycle whilst I am taking the drugs, my myeloma levels were slowly reducing. However during the last week of each cycle when no Ixazomib or Revlimid are taken, then my light chains would begin to rise again. Therefore I know that I need the Ird drugs to keep my myeloma under control for as long as possible to prevent a relapse. But as you say – for how long and at what dose? Unfortunately with Ird treatment being fairly new, then apart from the clinical trial results there isn’t much data on what drug doses are successfully used for long term maintenance treatment, unlike Revlimid which has been used as maintenance for many years with low doses of 5 – 10 mg proving effective.
Whilst on Ird, thankfully over the last year my light chain levels after each cycle have continued to slowly decrease from 3000 to 27, which is their lowest level even after two Scts. Whilst my light chains keep reducing and I can cope with the various side effects, then I’m not keen to reduce the dose of the drugs until the levels stabilise and remain well controlled for three months or longer. My consultant has advised that once the doses of the drugs are reduced, but then needed to be increased again if the myeloma begins to become more active again, then sometimes the drugs are unable to control the increased activity and a change of treatment is required.
What does your consultant say about reducing your drug doses?
Best wishes
Jan x
Hi Susie
It’s a good question which I’ve asked my consultant on a couple of occasions, but unfortunately there’s not a straightforward answer because it all depends on various factors such as whether your myeloma is aggressive, your past myeloma history with your previous treatments and relapses, as well as how you respond and tolerate the Ird combination of drugs. Understandably we all want to reduce our myeloma levels to as low as possible and then to maintain the low levels for as long as possible, but at the same time being able to achieve an acceptable quality of life whilst having to continue to take chemotherapy drugs whilst on maintenance. However the least favourite drug for many of us is the steroids especially at their starting level of 40mg per week due to their many adverse effects such as sleepless nights, mood swings and weight gain. Therefore once the treatment begins to consistently reduce myeloma levels, or you cannot tolerate such a high weekly steroid dose, then the first drug to be altered appears to be a reduction in the weekly steroids. Once you have achieved your lowest level of myeloma on Ird, then some patients appear to have the steroids tapered off, but maintain the Ixazomib and Revlimid drugs for as long as the treatment continues to work. The doses of these two drugs appears to be different for every patient depending on the factors mentioned above.
In my case, from cycle 7 onwards I started experiencing adverse side effects resulting in low platelet and neutrophil levels, therefore my consultant reduced my dose of Revlimid from 25mg to 15mg and the steroids from 40mg to 20mg to see whether this would increase the levels. Initially this strategy worked for a few months, but then the levels decreased again which currently are around 60 for my platelets and 0.8 for the neutrophils at the end of each cycle. I’ve now been prescribed weekly Gcsf injections every other month which appears to be working. Unfortunately both Revlimid and Ixazomib are known to reduce platelet levels, therefore it’s a case of seeing which drug, or combination of both, is affecting my platelets and then reducing the dose(s) accordingly. On the Ninlaro (Ixazomib) website, there are dose modification guidelines for prescribing Ird when patients experience adverse effects such as low platelets, low neutrophils, increased peripheral neuropathy, skin rashes, etc. The other option is to have a short break from the treatment to allow the body to recover.
We all tend to react and tolerate these combination of drugs differently and with Ird being a new oral treatment for relapsed myeloma, unfortunately there’s not long term data around about what’s the most effective way for maintenance treatment, especially When consideration has to be given to patient factors, disease factors and treatment factors. Hopefully with Ird currently being funded via the Cancer Drugs Fund, then more information will be available on this subject over the coming years. I’m just thankful the treatment is working for me and hope this continues for as long as possible.
How are you coping on Ird? Are your myeloma levels reducing?
Best wishes
Jan
Hi Helen
You have certainly gone through a pretty rough time over the last few months. Such sad news the Interferon didn’t work and that your future options are now unfortunately restricted due to your bone marrow being so fragile. I would be absolutely useless even with a small dose of cyclophosphamide, because this drug just causes me so much sickness, but I hope even a small dose of cyclophosphamide will control your light chains a little. Regular infusions of platelets and blood should keep you feeling well and give you some necessary energy to be able to enjoy your trip to Rome with your family.
We have followed each other’s highs and lows on our emotional myeloma journeys for many years, sharing our experiences of coping with the inevitable relapses, the harsh side effects of the treatments especially the endless fatigue, peripheral neuropathy, gastro issues and emotional reactions to the high dose steroids which can make us both feel grumpy, as well as the disappointing necessity to retire early from the jobs which we enjoyed due to ill health from myeloma. I’ve always been inspired and motivated by your caring approach and willingness to share your experiences to help and support me and many others on this forum, which has been much appreciated, provided hope and made what could be an isolated and anxious journey for many a lot easier.
I cannot imagine how you are feeling at the moment. Your head must be all over the place as you try to sort out some palliative care. What a terribly sad time for both you and your family. Nothing really prepares us for the final chapter of our lives with myeloma. I wish you all the strength both you and your family need.
Take care Helen. Sending you much love and hugs.
Jan x
Hi Susie
It’s good to read Ird is reducing your paraproteins so well only after a few cycles and long may this continue. It’s such a relief when you see the treatment is working, although coping with the side effects can be difficult especially in the first few months of each new treatment.
In the middle of cycle 5 my blood tests showed my neutrophils and platelets were low and when combined with my increased side effects of more fatigue, breathlessness, dizziness and spending majority of day just resting then my consultant decided to stop the Revlimid for the 3rd week of cycle 5 and then from cycle 6 onwards to reduce the dose of both Revlimid and Dex. Gcfs injections were prescribed during cycle 6 to help improve neutrophils, but apparently increasing platelet levels is much more difficult because platelet transfusions only increase the levels for a short period. It was hoped that the reduction in Revlimid would help improve my platelets, which seemed to work for cycles 6, 7 and 8, but the platelets and neutrophils decreased again at the end of cycle 9.
I thought I was coping OK with the reduced dose of Revlimid and Dex in terms of reduced side effects, but obviously the toxicity of the chemo is proving a bit too much for my body to manage which is such a shame as my light chains are continuing to decrease. I’m hoping a further reduction in Revlimid to 10mg will help my bloods recover and keep my myeloma levels under control, especially as maintenance treatment with Revlimid and Dex is usually 10mg of Revlimid.
Many thanks for your good wishes. I hope at your next clinic appointment you manage to fully discuss the side effects which you are experiencing with Ird and that possible solutions can be found.
Jan
Hi Susie
I’m really sorry you have felt so awful during your first few cycles of Ird treatment. It’s certainly not pleasant when you’re suffering with various side effects especially nausea which can seriously affect your eating, drinking and sleeping causing you to feel unwell, make your fatigue worse and makes you wonder whether you can tolerate further cycles. I experienced similar on my first line of treatment with 4 cycles of Cdt. You should ask if you can be monitored more frequently during your next few cycles to review your bloods, your myeloma levels and side effects to see whether you might need any changes in dosing or additional drugs to tackle the nausea and diarrhoea. It’s worth trying to find the right anti nausea drug which works for you on this particular chemotherapy, but unfortunately this is going to be trial and error. But there’s a large choice of anti nausea drugs which your consultant can recommend you trying.
I’m currently on my 10th cycle of Ird which has successfully managed to reduce my light chain levels from 3000 in May to around 50 in December which is terrific news. I do tend to suffer with bad nausea from chemotherapy and during my first couple of cycles of Ird the Ixazomib caused nausea and some vomiting for around 4 days each week, but following frequent discussions with my myeloma nurse and the palliative care doctor, a change of anti nausea medication was prescribed which has worked wonders with the nausea. But the anti nausea drug does cause me quite bad constipation despite laxatives, stool softeners and plenty of fruit/fibre/fluids. Fatigue became more of an issue for me during the 5th cycle probably not helped by 2 sleepless nights per week from the 40mg of Dex. I was breathless when climbing stairs and had no energy to move around much around the house. Blood tests showed a reduction in my platelet and neutrophil levels so my consultant lowered the dose of Revlimid from 25mg to 15mg and weekly steroids from 40mg to 20mg which certainly helped reduce the fatigue and helped with the inability to sleep from the Dex. The myeloma levels continued to decrease on the reduced dose and my blood results improved.
I thought I was managing well with the reduced dosing of the drugs until blood results at clinic last week showed my platelet levels had fallen again to 62 at the end of the cycle together with a low neutrophil level of 0.6. I am taking weekly Gcsf injections during this cycle to help boost the neutrophil levels, but apparently low platelets is more difficult to treat long term. I’m back to 2 week monitoring to see whether I need to take some time off the treatment to help my bloods recover and possibly the doses will be reduced again.
Before you think about stopping treatment, please talk to your team about how you are feeling and whether they can help you treat your side effects. I hope you manage to get some relief from the nausea, diarrhoea and fatigue. Do you know whether the first couple of cycles have reduced your myeloma levels?
Janice
Hello Helen
I’m really sorry your myeloma is now affecting your kidneys and causing you problems. To go through the two treatments of Daratumumab and Panabinostat without any success must be extremely disheartening and worrying for you and your family. Is it possible to revisit some of your previous treatments to see whether they might work again? Or there appears to be quite a few clinical trials available including CAR-T therapy. Perhaps talk to the Myeloma UK helpline?
I’m currently on cycle 9 of Ixazomib, Revlimid and Dex which has thankfully managed to reduce my light chains from 3000 in May to around 40, which is reaching the level I achieved after two stem cell transplants in 2010 and 2016. The Revlimid and steroid doses wwre reduced a couple of months ago, which has been far easier to cope with in terms of less side effects of fatigue, sleepless nights and dizziness. I just need to try to steer clear of a cold/flu virus which tends to increase my light chains by around 300 and they don’t always reduce after the virus has cleared.
Thinking of you Helen and hoping the interferon works for you.
Love Jan
Hi Judith
I’m currently on my 8th cycle of Ird which has successfully reduced my light chain levels from 3000 to 39. I hope the treatment is also working for yourself? I too have bowel problems from the drugs with ongoing constipation rather than the diarrhoea which you experience. Similar to my other myeloma chemotherapy treatments I also experience a range of side effects from the toxicity of the combination of drugs, i.e. nausea/vomiting (treated with anti-nausea drugs), fatigue, peripheral neuropathy in my legs, low platelets, reduced neutrophils, muscle cramps, and sleepless nights from the steroids. Thankfully the reduced Revlimid which commenced from my last cycle has helped with some of these side effects especially the fatigue.
With one of the common side effects of blood cancer being night sweats whilst you are sleeping, then it must be difficult for the doctors to identify whether the myeloma, the combination of the myeloma drugs and/or other medical factors are causing/contributing to your night sweats. But with talking the issue over with your haematologist you
will be able to find out more about what might be causing the issue and hopefully whether anything can be done to alleviate the problem.
In an attempt to ease my sweating at night, I’ve had to turn down the winter heating in our house to around 15c together with switching it off at 8.00 pm (much to the delight of my husband who has constantly moaned for years about our house being too warm in the winter months), open all windows in the bedroom during the winter as well as the summer months, purchase a very low tog rate quilt (2.5) with natural down, use 100% cotton sheets and use a cool gel pillow.
I hope you manage to find ways of alleviating your night sweats.
Jan
Hi,
For 3 years prior to being diagnosed with myeloma aged 53 years in 2010 I suffered really bad night sweats. Initially I thought the night sweats were linked to the menopause, however I’ve continued to sweat during the night and now during the day since living with myeloma. Your GP is correct in that sweating can be a side effect of myeloma and some of the drugs to treat myeloma such as Revlimid and Dexamethasone.
Similar to yourself, I’m currently on Ixazomib, Revlimid and Dexamethasone (Ird) which I commenced in May 2018. I’m also on Fentanyl patches and Tramadol for bone pain, both of which can cause sweating. Since starting Ird my sweating has been quite excessive at times especially during this year’s hot summer, but it can happen with minimal exertion and only stops if I sit down and rest, but sometimes I can just sweat lots whilst sitting watching TV. My hair can become soaked and the sweat can drip from my face and body resulting in me having to change clothes. Excessive sweating is really troublesome and can be quite embarrassing socially. I have to carry loads of tissues with me when out so that I can mop the sweat from my face. I’ve just had my dose of Revlimid reduced from 25mg to 15mg and the weekly steroids reduced from 40mg to 20mg, which I’m hoping will reduce the sweating a little which seems to be worse for me during the few days of each weekly steroid withdrawal period.
However we are not alone. There’s been a number of discussions on the Myeloma Beacon and Myeloma Facebook sites about this issue, with several myeloma patients linking their sweating problems to Revlimid and Dex. It’s worth discussing the issue with your haematology team to see whether they can offer you any help with the night sweats. I hope the Ird treatment is managing your myeloma activity. Are you suffering from any other side effects from this treatment?
Regards
Jan
Hi All,
Many thanks for all your welcome support and encouragement. I’m just about to complete my fourth cycle of Ixazomib, Revlimid and Dex (iRd) which is continuing to reduce my light chain levels from 3000 in May 2018 to 266. However my results from the middle and end of each cycle show my light chains still significantly increase during my week off each month of chemo, which is why I’m reluctant to reduce any of the drugs until my myeloma levels reach and maintain their lowest possible level. I’m just thankful I’m responding to treatment. Based on my experience of my previous myeloma chemo treatments, unfortunately I know that I tend to suffer with a range of side effects from the drugs with nausea, peripheral neuropathy and fatigue being fairly common for me.
It appears to be the Ixazomib which has been responsible for my nausea, but has now been controlled by changing my Emend anti nausea drug (which was also responsible for increasing my side effects to the steroids) to a weekly strong anti nausea patch. However the combination of Ixazomib and anti nausea patch does cause bad constipation which is proving to be an ongoing battle despite prescribed laxatives, stool softeners, together with fruit, fibre, prunes and plenty of fluids. The high dose of 40mg of weekly steroids provides some welcome energy for a few days and a relief from the ongoing fatigue, but the sleepless steroid nights do not help with the steroid withdrawal crash. Similar to Pat’s husband, on these days I’m without any energy and unable to do anything apart from catching up with sleep. The peripheral neuropathy has been OK for the last few months, which probably has been down to the heatwave because as soon as the temperature drops the pain and throbbing in my lower legs returns, but so far has not increased on this treatment.
Susie, I hope you get on well with iRd and the Revlimid doesn’t cause you too many problems. Fortunately I seem to be able to tolerate the 25mg of Revlimid. It’s strange how we all react so differently to each drug.
Jan x
Hi Mavis
We’ve both been very fortunate that our myeloma has been sensitive to treatment and we’ve managed to survive eight years since our diagnosis in 2010. I remember being given a life expectancy of 2-3 years after my first Sct in August 2010, but since then there’s been a welcome introduction of a variety of new drugs with more in the pipeline which have improved life expectancy. In Myeloma UK’s guide for newly diagnosed myeloma patients, the survival statistics for England and Wales states 47% of patients live for 5 years and 33% survive for 10 years. But I suppose these statistics also include patients who have unfortunately died early from late diagnosis, infection, late treatment, all ages and patients with high risk myeloma. I know that I have to try to steer clear of infections/virus because in the past shingles together with cold/flu virus have all significantly increased my light chain levels which tend not to return to their initial levels once the infection/virus has cleared.
My current treatment is working well with my light chains still reducing, although the fatigue from steroid sleepless nights and the chemo drugs is difficult to manage. However when to recommence Zomita still remains an issue for me now that I’m on long term treatment with high dose weekly steroids. I’ve read that high dose oral steroids for more than three months can effect the metabolism of calcium, Vitamin D and bone, which can then weaken your bones especially in the first six months of steroid use, causing possible bone loss and bone fractures in the spine and ribs. After having collapsed vertebra and ongoing bone pain from myeloma, then any further bone damage is something I would rather avoid. Perhaps this is why in America they currently recommend the use of bisphosphonates if you are on myeloma treatment, but suggest 3 monthly infusions for those myeloma patients susceptible to ONJ. Something else to discuss with my consultant, but I’ll wait until I’ve completed my first root canal filing next week.
I hope you remain in remission for many more years.
Love Jan x
