[philParticipant]

Hi. My name is Phil and my diagnosis was confirmed today.

The meeting started with the doctor asking me how I felt and I told him I was positive of getting a good diagnosis that would tell me it was benign. Straightaway he told me it was bad news but treatable.

Being over 70 (just about) I’m being put on Daratumumab, Lenalidomide and Dexamethasone at first.

My symptoms started a while back with continual fatigue even when having a shower or walking 100 yards or more. My GP (now sacked off for being incompetent) showed no interest when this was mentioned and also mis-diagnosed other problems that I had such as Cellulitis that she said was Shingles and prescribed the wrong treatment for.

I went to a new, recently graduated, GP who straightaway sent me to see a specialist at Kidderminster that I saw two days later. I had my bone marrow biopsy three days later and all four within two weeks.

I feel ok and full of life (apart from the fatigue) and enjoy life with my, slightly younger 🙂 , partner and going on holidays around the world and following my local football club around the country. While I’m following the initial stages of the treatment these will have to take a back seat but not too much of one hopefully.

So that’s me. I’ve joined the gang.

[mulberryParticipant]

Welcome to the group Phil and to the wider Myeloma community.

It’s always a profound shock getting this diagnosis, but most of us go on to have lives well worth living, and with new treatments being approved regularly the prognosis for each of us is better than it ever has been.

You are statistically average age for diagnosis, so hopefully you will have a long life with this disease. I feel it’s like a steeplechase, long periods where everything is straightforward, but occasional hurdles to cross, of one sort or another.
Treatment can initially make patients feel worse, & it’s important to report any even small side effects like peripheral neuropathy, but many of us can get back to a pretty normal life, recognisably the one we had before.

[sdfsjdklParticipant]

Hello Phil
Nice to hear your story so far. I have just joined today on behalf of my dad, who has a similar sounding story – usually active and healthy, he suddenly developed fatigue and swelling in one leg and the GP basically told him he was just old! We pressed for a referral (I’ve made a post with the full story) and now we are finding paraproteins and light chains, things we never heard of before, are not quite right. We are still in the very early stages of finding out what’s going on – only had the light chains back today. but feeling much more hopeful since reading posts in this forum which is a godsend.
Wishing you well with your treatment
Rachel

[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.

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