Chrism

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  • #151382

    chrism
    Participant

    Very pleased to read the positive comments.

    As an update I started my Elanatrab treatment in February. After a short spell in hospital I was given early release for good behaviour. However, after just two days I was back in suffering with extreme fatigue, shortness of breath and acute diarrhea. That meant I was taken off the treatment after just 2 doses whilst they stabilised me and got my bloods back to manageable levels.
    I resumed treatment after 6 weeks. So far, so good. All positive. I have had a cough however for over 5 months which has been resistant to drugs. Bearing in mind that our levels hit rock bottom with Elanatrab I have taken this as a necessary evil. It is slowly getting better although still there. It is not on the chest or in the head, but in my throat area which makes me croakey. I am still fairly breathless overall and think it time to move to a bungalow.
    However, the good news is that for the past few months by paraprotien levels have been undetectable and the consultant has just changed me to a 4 week injection regimen which is a lot more user friendly. Apart from the Elanatrab injections I have been given a host of new anti-biotics to supplement my 3 weekly infusion of Imugoblins.
    The take away from this is the threat of picking up bugs remains high and with the colder months kicking in the need to be vigilant, stay active and warm.
    Like all of us I just hope that this line of treatment has a longer shelf life in keeping MM at bay.
    FYI, I have travelled twice by plane this year to the Med to top up the Vitamin D. The secret has been managing what I do. The sunshine is great, but the heat can wipe you out. So nothing strenuous and nothing extreme. My wife has been great in recognising when we should slow down, take a rest and hide from the sun.
    As we all know life will never be the same as pre MM. But managed, this new drug is game changing compared to the previous regimen of chemo therapies.

    As an aside if any of you are thinking of travelling and have had little luck with Travel Insurance look at at Staysure, All Clear and Insurance with. They are all on the web. We now keep to just Europe given shorter travelling times. Easier to get home in a hurry and the insurance is far cheaper.

    All the best to everyone.
    Persevere with a smile!

    #151381

    chrism
    Participant

    Just noticed this post.
    Travel Insurance is always going to be expensive with medical conditions sadly.
    I was diagnosed with multiple myeloma back in 2013. After a period of remission it bounced back in 2019. This year I started new treatment on Elanatrab which touch wood has been successful in taking my paraprotiens back to undetectable.
    I have taken annual travel insurance every year. If you travel at least 2/3 times it works out better value then single trip cover. It has always been to Europe and some years included Cruise cover. Apart from listing my medical history the biggest barrier has been age. As soon as you reach 70 then a buzzer seems to go off at insurance companies.
    I am currently with Staysure insurance. I have previously used All Clear. There is also a new kid on the block that I found called “Insure with”.
    They all tend to follow the same format and use the same screening forms fyi.
    For cancer stage I have always ticked the don’t know box.

    As an aside some of the Banks offer travel insurance as part of their account. Again you do have to complete medical declarations, but they are the same as the companies above.

    Trust this is helpful

    #149737

    chrism
    Participant

    Dear all

    Many thanks for posting your experiences with this drug.
    I am finding it very useful.

    Currently a PET scan had revealed a growth in my upper back which has to be accessed for possible treatment by radiotherapy or a change in regimen to Elranatamab.

    The Royal Marsden are very enthusiastic about his new drug, but I still need to be convinced that a change from Belantamab is worthwhile given the weekly commitment to visits for injections i.e. lifesyle/health balance.

    For now I am finding your comments really useful

    #149684

    chrism
    Participant

    Many thanks for your note.
    Apologies, but I replied to the incorrect address originally.

    I am under the care of the Royal Marsden. Currently I am on Belantamab which is my 5th line of treatment. It is holding things, but does drag me down and cause eye toxicity.
    Hence the reccomendation of this new drug. It is full on to start with a hospital stay and weekly injections.

    Everything I hv heard suggest the results are positive but I am weighing up the commitment against the benefit.

    All the very best in your treatment

    • This reply was modified 1 year, 1 month ago by  chrism.
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