[molly1Participant]

Hello,

My Mum has recently been diagnosed and is in the last week of her 1st cycle of treatment (VTD). She has been extremely sick since the end of week 2 and is now on the third lot of anti-sickness tablets but none seem to be working. She’s struggling to keep drugs down and food, she cannot get out of bed due to the pain she’s in and she is barely eating anything so we’re worried that she’s getting weaker. She’s also dehydrated and had to have a saline drip to rehydrate earlier this week.

Just wondering if this is normal or if there is anything that may help?

Thanks

[louishenryParticipant]

This does sound worse than usual but if this is the last week of her first cycle she will be able to discuss it with her consultant. To begin with you get the double whammy of the effects of the disease plus the effects of the treatment. I found after two or three cycles I got much more used to the treatment, CTD for me, and began to feel the benefits of beginning to get the myeloma under control. Hang on in there, it’s horrible but it does improve, and your mum’s medical team will be able to advise alternatives for anything that’s not working.

 

[molly1Participant]

Thank you for your reply. This is somewhat reassuring as we have thought it was due to Mum not being used to the drugs etc. We will speak to the consultant next week and see what they say. Thank you again.

[peterlParticipant]

Hello Molly,

Sorry to hear that your Ma is suffering badly from the VTD treatment.  I was diagnosed in July ’15 and had a full 8 cycles of VTD until Feb ’16.  When first diagnosed, my specialist hospital nurse gave me a Macmillan Organiser, which I actually used after the first few weeks (sad eh!), to record the effects of the treatment.  I’m looking at it now…   I used X’s and ticks to signify bad and good days respectively, and on average, on a weekly basis, there were more X’s than ticks in the early months.  I used the pattern to try and get an idea when I’d be ‘fit enough’ to go out, during the weeks.  It got better as time went on, with roughly 4 ticks and 3 X’s a week towards cycle 8.  I had no sct, and am still in remission.  This horrible disease affects patients in entirely different ways.  I had no sickness, but couldn’t eat much.  I lost 4 stones.  I had severe shakes and wobbly legs, breathlessness and felt cold and shivery even when the room temp’ was 25DegC.  But I agree, sickness is a nasty side effect.

Could I ask what type of MM she has:  light chain, M spike…?  And is the pain in her hips/back…?  Is she drinking okay? [especially if her kidneys are affected].

As  Louis Henry says, hang in there, my experience was that it got easier as time went on, but I felt pretty ##### at the time.  Good luck to your Ma and the family.

Peter

[molly1Participant]

Hi Peter,

Thanks for your message. I’m sorry to hear of your diagnosis but it’s good to know you’re doing well after your treatment.

I don’t actually know what type of MM it is but I’ll see if I can find out. The pain is in her back, she’s in tramadol and morphene which I think helps to manage it but she still feels it. She’s struggling to get enough fluids because of being sick and she went to a&e last week for a saline drip. Hopefully on Tuesday her consultant can give her something to help but we’ll wait and see.

The organiser sounds like a good idea. I’ll look into that.

Thanks again for your message.

[peterlParticipant]

Hello again Molly,

Thanks for your reply.  If your Ma has lightchain MM, there’s 2 types: lambda and kappa, and both can affect the performance of the kidneys.  I understand that other forms of paraprotein MM can also affect the kidneys, but I think that the lightchain versions are the worst.  So it seems a good idea to keep as fully hydrated as possible (drip/drinking), if your Ma’s renal function is impaired.

I would ask the consultant, and find out what blood test results are important to your Ma’s well being.  Best of luck.

Peter

 

[peterlParticipant]

Sorry, I should have said – if you’re new to this mind bending, sometimes awful MM experience, there’s loads of info guides on this website that you can download, and that you and your Ma can look at.  And as I said yesterday, MM is very particular and affects people in many different ways.  For expert advice that’s just relevant to your Ma, you can either call or use this www to “Ask the Nurse”.  I (as an 18 month sufferer) have found their caring and professional advice invaluable in my fight against MM.

Peter

[molly1Participant]

<p style=”text-align: left;”>Hi again Peter,</p>
<p style=”text-align: left;”>Thanks for the advice. We will have a look at all the information. My Dad has managed to get a bit of advice off the nurse assigned to my Mum today and we’re hoping for some more tomorrow from the consultant.</p>
<p style=”text-align: left;”>It’s tough to get your head around all the types and treatment but so far the information we’ve had has been useful. We will continue to seek out information and do the best we can.</p>
<p style=”text-align: left;”>Kind regards</p>

[Author]

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