[andygParticipant]

Hi all.

It’s my Dex night and it crossed my mind I’ve been neglecting the forums. So I thought I’d fill you all in on what’s been happening since we returned from Greece.

First of all I had to have my head checked out, scalp not brain, and it was decided I needed a biopsy. They were pretty certain what it was and preempted the results by removing the suspect area and then repairing the area with a skin graft. The results came back as expected, Squamous Cell Carcinoma, though the biopsy showed the operation hadn’t been taken deep enough! The consultant wasn’t happy with the surgeon as it should of been excised down to the wood err skull. So he said the original site would need to be dug out again and made a bit bigger to take in another suspicious area also he would remove another couple of suspicious areas. This time I would have a general anaesthetic instead of just a local.

In the meantime I managed to get my temperature to 38.8 which was pretty scary given what I’d gone through a year previously. I went straight to the day unit told the first nurse I bumped into why I was there and I was immediately set upon with a cannula and the usual blood tests whilst we waited for the summoned doctor. The doctor checked me out and arranged for an X-ray she also had fluids pumped into my whilst we waited for the blood test results to come back. Fortunately my X-ray was clear though the bloods indicated I was fighting a infection and was neutropenic. So that was me staying in. I then had to tell Steph my news as she was at work. I could guess what she would be thinking. I was moved to the ward, in a single room, about 6pm my temperature was proving rather stubborn and refusing to come down significantly even with the fluids and now antibiotics – a worrying time. The next morning my consultant came by and did look a bit worried – she added some extra antibiotics to the mix and said “we’ll see how you are after the weekend ” I thought – after the weekend! It’s only Wednesday now! Anyway my temperature eventually came down and I was let home Monday evening with some oral antibiotics. Discharge notes had me down as having neutropenic sepsis not a good thing to have if you’re immunosuppresed.

I then got my appointment for my surgery on my scalp which happened nearly two weeks ago. It was in the day case unit of another hospital not the one where I get treated for my Myeloma. Had to be there for 7:30! Went in for my operation at 10:15 and was back in my comfy chair just after midday. Proved I could eat and drink and by 4pm they phoned Steph to say I was good to go. I went to the wash room to wash away some blood and was startled to see my reflection! I thought I’d be all bandaged up but I was wrong I looked like Frankenstein’s monster lol with shiny staples and black stitches and two sponges stapled to my head. The staples made it difficult to sleep though I only needed pain killers for a couple of days. The site where they took the skin graft from was the sorest. Yesterday hmm Monday I went back and had my staples and stitches removed that was fun NOT and I’m back again Friday to see how my donor site is getting on and a check on the grafts.

In the meantime I’m on cycle 37 of Pomalidomide and Dex.

Sorry about the long ramble it’s not my fault it’s the Dexamethasone.

Every day is a gift.

Andy xx

• This topic was modified 7 years, 5 months ago by  andyg.

[davidainsdaleParticipant]

Good to hear from you. You are a hero. As if myeloma wasn’t enough to cope with…….

 

David S

[andygParticipant]

Hi David.

Can’t think of myself as a hero! David. I’m just doing whatever it takes to get by. But I thank you for the sentiment it gave me boost.

Every day is a gift.

Andy

 

[rebeccaRParticipant]

Hi Andy,

Sounds like you need/deserve another holiday! Sometimes you read posts like this and think wow you’ve been through the mill and come through it and all’s well..great …but when you reread it and, for some, remembering time on treatment, it is one massive helluva trauma to go through from start to finish. Your line “I then had to tell Steph my news as she was at work…” even your little sentences, when you reflect, are a drama on their own – wreaking havoc. So Andy, hats off to both you and Steph, you really are an inspiration and role models to all. We all read your posts and it gives hope that we too, if/when we are in that situation, can overcome it and move on and still think every day is a gift…because now we know it can be done – you set the bar high! We all know life is not easy and it is what you make of it so always pat yourselves on the back for continuously finding that inner strength to do your best…true Brit grit. Have a lovely “quiet” Xmas

Rebecca

[andygParticipant]

Thanks Rebecca.

What a lovely post it’s given me a real boost thank you xx.

Well to my latest news. My PPs have continued to rise and all discussions are now about what happens next. My specialist nurse and I had a discussion about where I maybe heading when I picked my latest round of drugs up. It seems like there may be a few options open to me including a possible trial MUK8. I’ve got an appointment with my consultant on the 15th Dec so maybe I’ll find out then what I’m going to get off the NHS for Christmas.

I’m hoping my next blood tests show my PPs have dropped a bit so there will be no rush to change treatment just yet. Funnily enough I feel quite good.

Oh I had my 15 mins of fame in our local paper and in the Mirror online.

http://www.gazettelive.co.uk/news/teesside-news/andrew-found-out-incurable-cancer-12244069

Every day is a gift.

Andy xx

 

 

• This reply was modified 7 years, 4 months ago by  andyg.

[finnParticipant]

Hi Andy

Good to hear that you are doing well. Just out of curiosity, are they offering you a possibility to go on daratumumab? I would like to try that drug next but I don’t know if it is available for us here in UK yet. Are they offering you MUK8 trial because you previously responded well to proteosome inhibitors such as bortezomib?

[janwParticipant]

Hi Andy

I thought your newspaper article was good and certainly helped raise awareness of myeloma. I hope your recent operations on your head have managed to remove the necessary suspicious areas and that your scalp has recovered well. Have all your results come back OK? You were on my mind when my 97 year old dad spent three hours last week at a local dermatology clinic having two areas of skin cancer removed under local anaesthic from his back and behind his ear, with a skin graft taken from his shoulder to patch the wound behind his ear. At least he wasn’t sent home with sponges stapled to his head like yourself. He’s had many operations over the past 20 years to remove skin cancer patches around his head and upper body, which have thought to be been caused when he served in the navy during World War Two and got burnt time and time again on his exposed skin when he spent many hours on deck aboard mine sweepers in the Med. Thankfully all of the ops have been successful.

Although your myeloma levels are gradually increasing, you must be really relieved that pomalidomide has managed to control your myeloma for years, especially as during that time more trials and drugs become available. MUK 8 looks like a promising combination of drugs. Reading through the slides from the recent myeloma info days, the appears to be quite a few MUK clinical trials currently being planned. I hope your meeting with your consultant goes well this week.

All the best. Jan x

[peterlParticipant]

Hi Andy,

Nasty to have a squamous carcinoma on the skull!  No problem with the carcinoma, because they hardly ever spread, but on the skull veneer , it’s a bit difficult to get it all out in one. I’ve had many head stitches through sports accidents, and it can be a bit uncomfortable after the treatment. Did your consultant say there was any connection with your reduced immunity (due to the MM medication) and the development of the carcinoma?  See my earlier post regarding prostate difficulties.

Some years ago I had a squamous that developed under my left eye. It never bothered me until it started bleeding, if I dried my face with a rough towel. The surgeon (Dr Salisbury) asked me how long I’d lived in the tropics?  Because of the UV skin damage to my face! Never, I replied. Some Mediterranean holidays (obviously) but nothing more. It then occurred to me…  Years ago I also played a lot of tennis, and in those days there were no tie-breaks, so five setters could go on a long time. Looking up at the sun and serving didn’t do me any favours, and I couldn’t use creams because they stung my eyes! And in those days sun damage wasn’t really appreciated, and certainly not by my coaching team.

Hats, cream and loads of MM treatment are now the order of the day for me.  It was great to hear from you, have a great Christmas etc. And all the best,

Peter

[andygParticipant]

Hi Finn,

I don’t know what is available to me till I see my consultant on Thursday. The discussion with my specialist nurse was just a bit of speculation. I’ve only had a response from two drugs to date, Revlimid and Pomalidomide, nothing else has worked for me.

Hi Jan,

My scalp is healing nicely thanks. Though my thigh where they took the grafts from is still a bit sore. Your dad has been through a lot of operations and it’s great they have been successful.

If I manage to get another cycle in I will of completed three years on Pomalidomide. Will have to see what 2017 has in store for me.

Hi Peter,

I think it’s probably a combination of things that caused my squamous c.c. I’ve been bald since my twenties, played football and ran in all weathers, I’m immunosuppressed due to my myeloma and of course the drugs don’t help.

For me at the moment it’s hats, factor 50 sunscreen and scalpels.

Thanks for the Christmas wishes I hope yours goes well and 2017 is kind to you – to everyone.

Every day is a gift.

Andy x

 

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