DavidSimister

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Viewing 15 posts - 1 through 15 (of 152 total)
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  • #143023

    davidainsdale
    Participant

    Hi Poco Loco

    Sorry to hear that you’re having side effects from your Zometa treatment. As always, the first people to approach are your medical team and then the Myeloma UK helpline.

    I had 24 cycles of Zometa in 2013 and started again last year, now on cycle 13 of 24. I also know others in our myeloma support group who are on this treatment as well.

    What they call `Zometa flu’ after the first infusion seems very common, ie hot and cold shivers, but this seems to go away with subsequent infusions. Fatigue also seems to be common for a day or two afterwards, and my skin seems to be more sensitive as well. Other than these fairly minor side effects it seems to be fairly well tolerated.

    Hope this helps

    David

    #142964

    davidainsdale
    Participant

    Hi Suzi123

    Sorry to hear that you have been diagnosed with myeloma. You’ll find plent of advice on this forum and I would recommend joining one of the myeloma support groups if there is one near to you.

    I was diagnosed in 2013 at the age of 59, now 9 years on. So, to answer, your query I had DVd as second line treatment in 2019, that is without the Thalidomide. ( I had this with CTd as part of first line treatment when my pps started at 55). The DVTd combination is quite new so there probably aren’t many who have had it yet.

    I had eight cycles of DVd over 168 days, and if I am totally honest is was a slog particularly towards the end. Neuropathy is one of the side effects to watch out for. That said, I started with pps of 19 and my bloods and pps are now normal, I’m now on Cycle 25 of monthly maintenance. So it does seem to be a very effective treatment. I started a separate thread on this forum about 2nd line Darzalax maintenance which may be of interest.

    Hope this helps.

    David

    #142868

    davidainsdale
    Participant

    Hi Everyone

    It’s been a while since I last posted so thought it was a good time to provide an update on my monthly Darzalax maintenance treatment. Now on Cycle 25 of maintenance.

    I am keeping well with bloods, pps and organ functions all normal, so very pleased at how effective the DVD and monthly maintenance is. Neuropathy continues to improve and is there just in the background, not really a problem or noticeable. Tired with the dexi for a coupkle of days but very predictable.

    I’ve been keeping an expensive bottle of red wine to one side as a treat, and have now opened it to celebrate start of cycle 25!

    Hope this helps.
    David

    #142704

    davidainsdale
    Participant

    Hello Normant

    Sorry to hear that you have myeloma and that you have concerns about your treatment. Happy to share my experience which may help.

    CTD seems to be a well established first line treatment and you would expect this to be a well trodden path for haematology consultants. I would suggest that care is needed in comparing different treatment regimes since the drug doses can vary ( eg CTD-attenauated ) and with and without treatment breaks, which probably make at least half a dozen different combinations.

    I was diagnosed in 2013 aged 59 and had CTD for six cycles of three weeks each continuously ie no breaks. Cyclophosamide dose was 50mg. 10 for 3 days each week, dexamethasone 20 for each of 4 days per week and Thalidomide 50mg 2 each day. My paraproteins started at 55 and reduced to 2.5 at the end of treatment, then went on to have a stem cell transplant.

    I have to say that at by the end of 126 days of CTD I was suffering with quite a few side effects and was more than glad to stop. It was a slog so quite surprised that you mention the possibility of 12 cycles.

    I had a good period of remission, but relapsed in 2019, 2nd line treatment of DVD and now doing well with good quality of life.

    Hope this helps.

    David

    #142593

    davidainsdale
    Participant

    Hello Shaz

    Sorry to hear that you are having back problems, but you ask a very good question, especially since we all spend a lot of time in bed. My spine collapsed by four inches when I was first diagnosed and have experienced the same problems. Fortunately, my condition has stabilised with treatment and exercise.

    You are probably best talking to your healthcare team first since everyone is different and individual. They may refer you to a physiotherapist who could advise.

    I found that placing a board under the mattress helped to give support and also buying a new mattress. Personally I have found the beds used by Premier Inn to be the most comfortable ( no commercial interest) and you can buy them online, but they are not cheap. We have one at home and find it very comfortable.

    Another tip … I used the nordic walking poles when I go out to help support my back, again an easy win, but very useful.

    Hope this helps.
    David

    #142373

    davidainsdale
    Participant

    Hi

    Thanks for your post and update.

    Good to hear that you are doing well on the Darzalax maintenance,it seems to be well tolerated and your experiences are very similar to mine. PN still flairs up now and again, but consultant said that this was most likely due to the Velcade rather than Darzalax.

    David

    #142341

    davidainsdale
    Participant

    Hi ironbear62

    Glad to hear that your stem cell transplant has been successful but you can do without being messed around by the system.

    My suggestion is to contact your MP and ask him/her to get in touch with your Clinical Commissioning Group Chief Exec.

    Hope this helps.
    David

    #142300

    davidainsdale
    Participant

    Hi Christine

    Sorry to hear that you are still suffering from fatique, I had my Stem Cell transplant like you aged 59, now 67 but still feel tired each day, but put this down to old age. I don’t think you are in anyway alone feeling like this.

    They say that having myeloma is a marathon, not a sprint, so it pays to take advice on how best to manage the fatigue. There is plenty of advice available from your healtcare team, Myeloma UK and Macmillan. They also say not to suffer in silence.

    Your employer should make reasonable adjustments for you to work following treatment.It may be worth speaking to your Trade Union safety rep if you have one.

    I do what I can when I have the energy , and then have a rest ( daytime TV ) when I’m whacked!

    Hope this helps
    David

    #142276

    davidainsdale
    Participant

    Hi All

    Thought it would be good to give another update.

    I’m now on Cycle 16 of Darzalax monthly maintenance. Bloods, pps and organ functions all normal, so very pleased with the response.

    Side effects, particuarly the neuropathy in my feet, continue to improve.

    I’ve had the double COVID jab but still being cautious where I go and what I do but have managed a couple of family visits after lock-down.

    I’ve had several conversations with different consultants about the efficacy of a second stem cell transplant in combination with DVD. I’ve drawn up a long list of pros and cons which I have to admit were fairly evenly balanced. It’s been a difficult decision but I’ve decided against a 2nd transplant and will stick with the maintenance.

    Hope this helps
    David

    #142258

    davidainsdale
    Participant

    Hello Jaydee63

    Sorry to hear that your dad has been diagnosed with myeloma and that you and your family are having a rough time just now.

    I would certainly agree with Jane’s comments above and in my role as support group leader for a myeloma group in the North West I have met a number of patients and families in similar circumstances to yourself. They say that you should not suffer in silence' and you only get what you ask for’. Your haematologist clinical specialist nurse should be able to advise and provide access to the mutli disciplinary team. COVID restriction seem to be making everything more complicated just now so you may need to be persistent.

    Hope this helps
    David

    #141972

    davidainsdale
    Participant

    Hi Claro70

    Sorry to hear that you are facing a few challenges just now.

    We have a myeloma support group here in the North West, and your experience is by no means unique with others in our group being on a similar journey. We have found that carers find just as much value from talking to others in the support group as do the patients, particularly when family members go to the same hospital, have the same consultant etc. This may be something you have already tried, but if not, it’s certainly something I would recommend.

    Hope this helps.

    David

    #141927

    davidainsdale
    Participant

    Hi Susieundies

    Sorry to hear that you are struggling with treatment, it can be a real slog at times.

    I would certainly agree with Mulberry’s comments about the value of finding a local myeloma support group.

    Our group here in the North West is very active, patients and carers both find it very valuable talking to others similarly affected, particularly if they are at the same clinic. Even to find someone with a listening ear can be a big boost.

    Hope this helps
    David

    #141704

    davidainsdale
    Participant

    Hi All

    It’s bit a while since I posted here with an update. Just started Cycle 10 of Darzalax monthly maintenance. Bloods, pps and organ functions all OK, so it’s a good start to the New Year.

    Side effects not too much of nuisance and seem to be settling down. Neuropathy flairs up every now and again for a few days and then settles back down.

    My consultant has advised me to take the COVID if and when it is offered to me.

    Hope this helps.
    David

    #141610

    davidainsdale
    Participant

    Hi Julie

    Sorry to hear that your dad is suffering with PN. It seems to be quite a common side effect of myeloma treatments. I would certainly agree with Robert above.

    The Myeloma UK helpline and your local healthcare team are obviously the first port of call for advice, and there is an advice booklet on this website if you’ve not already seen it.

    I have just finished second line treatment of DVd which included 8 cycles of Velcade. The PN flaired up towards the end and carried on for a few months , worse at night time.

    Thankfully it has reduced considerably and is little more than a nuisance now. Some tips I picked up from this forum were wearing two or even three pairs of socks in bed, this certainly helped. Also massaging feet and hands with Frankenscence and Myrrh neuropathy oil which you can buy on line from iHerb. Again I found this helpful.

    Pre-COVID our local clinic did offer treatment for PN based on massage with oils but this has been suspended temporarily. Something you could enquire about.

    Hope this helps and good luck.

    David

    #141592

    davidainsdale
    Participant

    Hello Marty2019

    Sorry to hear of your mishap in the bathroom. These sorts of things can be quite serious and safety at home is often ignored.

    Our local myeloma support group arranged a talk last year from the Falls Prevention team in West Lancs which was excellent. They are part of NHS. Local agencies such as Macmillan, Age Concern or even your GP should be able to signpost you to someone in your area who can help with aids and advice around the house.

    I spent my working career in Health and Safety and know how important it is to prevent slips, trips and falls both in the workplace and at home. Accidents like these are surprisingly common.

    The best advice I ever heard was Take Two' - just take two minutes to think about things before starting to do anything, this is a good way to avoid anyown goals’ at home.

    Hope this helps and hope you feel better soon.

    David

Viewing 15 posts - 1 through 15 (of 152 total)