This topic contains 24 replies, has 11 voices, and was last updated by 
christaylor 7 years, 3 months ago.
Hello To All,
My 1st post, I was diagnosed on 19/01/16 just short of my 63rd birthday & underwent 6 cycles of VTD followed by a SCT at LRI.
I was discharged from LRI, following the SCT, on 12th Oct.’16 after 10 days!! I was so pleased to be going home & with getting off quite lightly with regards to Melphalan side-effects, I actually had no mouth or throat sores, no sickness & came out of hospital the same weight that I went in!
I was told I probably came through the SCT relatively well because I was quite fit & active & used to a good balanced diet, though I have always been a great advocate of ‘a little of everything & no excess’.
I have been Zometa free for approx. 3 mths. while having the SCT & was re-started on it again 2 wks. ago, 36 hrs. after the the infusion I experienced side-effects with the worse being depressed breathing(not requiring treatment but noticeable), arrhythmia & the usual aches & pains in bones, joints, calves, feet & an increase to some side-effects after activity, especially 2×1 mile walks I took over the 1st wk. post Zometa.
Sound familiar to anyone? This past wk. I have been weighing up the pro’s & con’s of continuing or not with Zometa & I am finding it quite difficult.
Apart from the side-effects I have mentioned & ONJ there is also an increased risk of kidney damage(apparently a reason why some Dr.s stop or reduce Zometa after 2 yrs.), oesophageal cancer & as said on this forum hardening of the bone.
On the plus side we have, ?anti Myeloma properties(longer remission period), strengthens bones slows further bone damage & helps with bone repair.
I see my Consultant in 2 wks. time & as you may have guessed I will be discussing this with her, has anyone already had this conversation with their Consultant & if so what was said?
If not, then I would be interested to hear what others feel with regards to Zometa.
Thanks,
Ian.
Hi Ian,
I had this discussion with my consultant a couple of weeks ago. I had 6 months of Zometa before SCT and then had an 18 month break. My consultant thinks I should go back on Zometa as the benefits outweigh the negatives in his view. He mentioned the 2 year period that you mentioned and said he would advise the infusion once every quarter rather than every month going forward. I’ve been lucky in that i’ve had no side effects from it (at least none I could specifically pin to that) so I have accepted the plan. Would be interested to hear others’ thoughts as well.
Greg
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 Ian
Zometa appears to quite common as part of initial myeloma treatment. I had it for two years after which my consultant said that there was no evidence that staying on it for long had any beneficial effects.
That said, this practice does seem to vary around the country from hospital to hospital from what I have seen and heard. Maybe it is down to individual patients.
For me, like Jan, I had the Zometa flu after the first infusion but after that had no problems at all. I suspected that after a week or two my skin became more irritable for a couple of days but then passed.
They say that a good tip is to drink plenty of fluids before and after you have the Zometa which helps the kidneys. May be something to check with your medical team or the nurses on the helpline. The other common piece of advice is to check with your dentist if any work is needed and get this all out of the way before you start the Zometa.
Hope this helps.
David
Hi,
Many thanks to Greg, Jan & David for your replies, you raised some good points.
I did suffer the same side-effects while on my chemo cycles prior to my SCT & always remember that I felt pretty rubbish 2 days after every Zometa infusion but at that time I was on so many drugs it was always going to be difficult to determine which drug was responsible for which side-effect.
I totally agree that our bodies change due to the SCT procedure & I guess to a lesser degree to the chemo cycles as well, there are many stories from SCT receivers of various changes that have occurred, my most noticeable ones are that my skin is more sensitive & dryer, varicose veins have appeared on my legs & of course the proverbial & expected reduced strength & stamina.
But yes I may be experiencing added side-effects due to changes associated with the SCT & these may reduce as time goes by & then my mind begins wrestling with “so maybe I should stop the Zometa for 6 mths. & then resume or only resume when I come out of remission?”
As to my breathing specifically, my breathing was very good prior to my Zometa infusion 2 wks. ago but 2 days after it my breathing was noticeably depressed, ergo I can only really point to the Zometa.
Ian.
Hello Sand, I found your post so interesting and positive about your SCT, yes like you my first dozen or or so Zometa infusions gave me plenty of bone pain but I had really bad bone damage to start with. And after my SCT in March 2015 I was in partial remission until January this year, although the MM was rising all the time and by December last year the scans showed further bone damage was starting so I have gone onto VCD my first 3 weeks. I have just started Zometa again having already had my 24 monthly doses, but because my kidney function is ok the Consultant said it was ok, however after reading Jans good comments I will ask my Consultant in April to consider just having it quarterly. That way I feel I would get the benefit without causing other issues. Good luck with your progress, it appears you have done really well. My SCT wasn’t nice and I don’t really want a second one but the Consultant is pushing me for it , at this time having only about 18months remission just wasn’t long enough or did I expect to much ?. All the Best . CT.
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 Jan, Thank you for your post, and especially the point about continuing the Zometa at a time when further bone damage has been shown by the latest scans. I will mention it to the Consultant in April so that I can get the best outcome when considering all the factors. The second SCT option I just cannot see the overall benefit of going through with all discomfort ( very understated ) for the amount of time in remission in my case. I did have a number of issues prior , during & after the SCT , I had a blood clot in the left leg, then after my spine repair Operation we were taking a gentle walk when I got a suspected Blood clot in the chest which I was rushed to hospital. Then due to low immunities twice I’ve been admitted with Phuenomia the last time was Boxing Day. Maybe I have just been unlucky this time or certainly lucky I’ve survived haha. Again Thank you for your advice.
Take care, CT.
Hi Chris,
Really sorry you were only in remission for 18 mths, its a game of roulette, we all hope for a long period free of the squatters but as is said “it is what it is” short or long period.
I agree with Jan in that if bone damage is apparent again then maybe seriously consider going with the mthly Zometa again.
We’re never going to know if any choices we make during treatment are going to be the most beneficial for us, we can only take on board all the available info., talk it over with our consultant, our families & partners before coming to an informed decision about what we want for ourselves treatment wise.
My wife & I were chatting about thoughts & feelings with regards to the cancer & everything associated with it just recently & we were in total agreement that only the people with cancer can truly understand the thoughts & feelings we go through & exactly the same applies to what our partners think & feel, am I stating the obvious, maybe.
I only say this after reading that you weren’t sure about a second SCT, it got me thinking about my own feelings about any further SCTs.
You’ll work out whats best for you & whatever that is my best wishes to you & be lucky!
Ian.
Hi Ian, Thank you for your post, and the kind thoughtful ways of trying to make our minds up on which path to take. I really understand where your coming from, it’s like when I go to day care at my local hospice I find solace with another chap who is in the same situation and we both enjoy each other’s company. He understands what I am going through and I understand what he is going through so we get real benefit from each other.
The first cycle of VCD is complete and I managed it fairly well but they have reduced the dose a little because of my a Tinnitus went through the roof and was driving me crazy. The next stage will be what the blood test results show ?, I feel it’s working because my fatigue has improved along with the amount of bone pain I was getting just prior to the new treatment. In regards to the 2nd SCT I am due to go to Kings College hospital next month it was they who did it. And they are not aware yet of the relapse so it’s going to be interesting what they have to say and maybe recommend. Again thank you for the reply.
take care CT.
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