What is going on??

This topic contains 3 replies, has 4 voices, and was last updated by  lynnes 6 years, 10 months ago.

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  • #133674

    sabs
    Participant

    Hi,

    I wanted to know if anyone has had any issues with the following, albeit i am going to be slightly vague here:

    My other half has just finished his cycle two and is now on a week off however had to skip his last chemo session (twice a week) because of some severe side effects:

    Two weeks ago they put him on the bone strengthening drug (apologies i forget the name), this in turn has had a horrible side effect, two days later we ended up in A&E with a high fever, bad stomach cramps and headaches. Needless to say this also had knock on affects with his pancreas and calcium levels and he also got an infection. He recovered in a few days after being treated, however come the following Wednesday for his scheduled chemo the following day we had to rush straight back to the hospital, mass dehydration, nausea, vomiting, not even water could be kept down.

    For some strange reason the bone drug enhanced and made worse his chemo symptoms, but they were still taking about keeping him on the bone drug – come our next Dr appointment I will be having serious discussions as we have just spent the past 8 out 10 days in hospitals and the bone drug is given once a month – the last affects are horrendous each time he has chemo. My other half has spent most of his time hooked up to an IV for 6 hours at a time to be re-hydrated as its causing issues with his Kidneys (also noticed that after cycle one they stopped the kidney medication??)

    Has anyone else had any problems with the bone drugs making the chemo more potent and do you really have to have the bone strengthening drug ??

    There is no way that he can have another dosage of this stuff.

     

    Sab’s

     

     

    #133850

    debbieg
    Participant

    Hello

    My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.  I am sorry that no-one has yet replied to your post, and I am sorry to read of the difficulties your partner has experienced.

    I wonder if you and your partner have had an opportunity to reflect on the experience with his doctor (haematologist) or the team?  Whilst it is always possible for an individual to have an adverse reaction to a drug, and the drug I believe he may have been on (zoledronic acid?) can have an effect on kidney function, there is also the possibility that some of your partner’s experience was a combination of this and other issues (for example he may have already been developing an infection and this may have contributed to the overall situation).  Either way it is clear that you and your partner will want to understand what the team think happened, and what might be done to minimise the chances of a repeat experience.  Please do ask for a consultation if you haven’t already.

    With regard to the ‘kidney medication’ being stopped after one cycle I believe you may be talking about the drug allopurinol?  This drug is usually given for the first cycle of treatment and then stopped.  It is given to help the kidneys to process waste that is generated as the myeloma cells are destroyed.  The reason it is usually only given for the first cycle of treatment is because this is when the ‘bulk’ of myeloma cells are destroyed. In subsequent cycles of treatment the waste generated is less and this drug is generally not needed.

    I hope this has been helpful. If you have any further questions, please feel free to email directly to askthenurse@myeloma.org.uk or alternatively if you would like to talk things through please call us on the Myeloma Infoline on 0800 980 3332.

    With best wishes

    Debbie Gardiner
    Myeloma Information Specialist

    #133870

    tmcintyre
    Participant

    Hi Sab’s

    My husband has had  Zolendronic Acid 5 times, the first 4 times he had no reaction at all.  This time he has been troubled by symptoms similar to a summer cold.  He has coughed persistently since treatment started but now has nasal congestion too.  As he recently had his first Pentamidine Nebulizer  and a change of chemo we don’t know if that has contributed to it.  We will discuss with his consultant next week. Over the last 6 months he has been given antibiotics three times, once involving a stay in hospital. He also had just a 7 day course of Allopurinol at the start of his first cycle.  We are keen to stick with the Zolendronic Acid – I think there is another drug which you can try if necessary – as the benefits make it worthwhile.

    We have found the whole team to be ready to listen to any problems and they have been keen to alleviate any adverse effects. Inbetween the clinic appointments we have two specialist nurses to call of if necessary.

    I hope your other half gets some relief with some adjustments to his treatment.

     

    #133972

    lynnes
    Participant

    I received my first Zometa infusion just before starting VTD treatment.  I received a 15 minutes infusion at 5 p.m. on 8th May, went to work as usual on the morning of 9th but had to leave for home at lunchtime with severe shaking, bloodless fingers and profuse sweating.  Was in bed for two days alternating with high fever, shivering, sweating, delusional – dreadful time.  When I could get out of bed I could not raise my arms and my calf muscles felt as if I had run a marathon.  I was not warned of side-effects and went on for my first Velcade injection on 12th May.  I was loath to have a second Zometa infusion but received advice via posts on this forum that a longer infusion time could help, along with drinking plenty of fluids before, during and after the infusion.  Reluctantly I agreed to another try and this time the infusion was for 30 minutes and I also received a saline flush afterwards.  The side effects were minimal this time, although my limbs felt a lot heavier than my new “normal”.  I am not sure of the benefits – is there anyone that could explain them to me.

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