[philParticipant]

I was told to get Bourneville so I get 2 bars a week. I needed no second asking as I prefer it to milk chocolate anyway.

Trouble is a never see much of it because my partner nicks it all.

I don’t know if it works for Myeloma but it works for me 🙂

[philParticipant]

My partner and myself are also facing the same problem now.

Previously I was on 1st Line and once the early stages of treatment (Leni, Dexi, Zometa and Dara) was done we could do what we liked. it was just like I had never been diagnosed. That lasted 18 months and then everything went wrong.

I’d been having severe back pains diagnosed as a fractured vertebrae and then collapsed one morning. The heavens(bowels) opened and I was rushed to hospital with a suspected spinal cord compression. That’s when multiple vertebrae go and the spine reacts like a pack of cards.

At the end of my stay in hospital my consultant came to see me and said I could go home but would now be on 2nd Line (Carbofilzomib and Dexi). At least my support drugs would drop from 13 a day – over the day – to 4. That has now gone up to 5 with morphine added.

The bad news wasn’t wanted but neither was the news that any sex that involved exchange of bodily fluids was now most definitely, certainly, no choice) off the menu.

I find it hard to move onto her but that is getting better with physio but we both enjoyed oral, giving and receiving. Penetration ( with protection) is also very difficult.

We used to have ‘Friday Night Fun’ and I’ll leave that to your imagination but that has now ended too. The interest is just no longer there on the day although we discuss it during the week.

Has anyone else been told the same and did you overcome (ignore) it without detrimental results. We’d both love it all return but there’s always that doubt if we do try anything.

• This reply was modified 5 days, 23 hours ago by  phil.

[philParticipant]

Hi Stillgoing.

I have it from the top of my head (right side) down to my neck. Ask your clinic or your GP to prescribe you Gabapentin (pre-gabellin)

Taken three times a day it will eventually get better although you will experience the occasional attack.

[philParticipant]

Hi Mack…

You could also take a look at Able2Travel: https://www.able2travel.com/

I’ve found them to be very reasonable.

[philParticipant]

I’ve not had the facial rash but do have it all over the rest of my body from the shoulders down to my knees.

Following individual drugs being stopped temporarily it was pinpointed as Co-Trimoxazole as being the culprit and the rash subsided but didn’t go completely. This was confirmed when I went back on it temporarily for three days and the rash returned.

If you’re on Co-T then it might be worth coming off it for a while.

• This reply was modified 1 year, 4 months ago by  phil.

[philParticipant]

Hi sdfs err more letters. Do you have a more pronounceable name we could use? 🙂

I read your full account and hope that your father is getting the attention this needs. If all the important tests are carried out then all the correct procedures should now begin to take place.

I had my second chemo today, three weeks after my confirmation meeting, so it all moves along quite quickly once started.

My initial chemo last week took around 6 hours with pre-meds, Zometa and Dara being administered then four hours of observations. The cancer unit at Kidderminster is wonderful and really do deserve the high ratings they get. I actually enjoyed the day ???

I started my home drugs next morning (14 of them) and wasn’t too bad during the day. By the evening I experienced the expected first backlash to Dara with shivering and feverishness. Went to bed and it was gone by the morning.

Then came the side effects. My arm began to hurt where I’ve had a long term arthritic elbow. That was agony with the drugs seeking out weaknesses. That took four days to go but then on Wednesday night I woke with intense neck pains that felt like my head was dropping off. I also have a slight arthritic joint in my neck and the little bugger had found it.

Rang the ‘panic line’ at 4 in the morning and they gave advice but couldn’t pin point which drug was causing it.

At my chemo today I just had the Dara injection and could have gone home straightaway but stayed for a coffee and chat with the other patients there.

My consultant thinks the elbow and neck problem could be down to the arthritis reacting and not a side effect of any of the drugs prescribed. Gave an unpronounceable name for it but it was nothing to worry about long term.

Within a week of my first chemo my bloods have improved dramatically and my paraprotein level has already begun to drop back towards normal. My calcium level needs improvement and need to be sorted personally by next Friday. I hate Brassicas but looking forwards to all those real cream cakes.

I was scared last week but after today I’m a lot more hopeful. You might find your father will also get a similar positive treatment and he will also feel more confident too.

[Author]

Posts