SIX MONTH CHECK!

Really good to hear this Annette. I’m looking forward to the possibility of stopping my immunotherapy in March and being able to decrease the number of hospital visits. As always I have your example as one possibility of what can happen although I’m hoping side effects will be kinder to me ! And not start effecting me further down the track. 

Keep on keeping on, best wishes

Hi KT, Thanks for your reply.  I hope you do get to stop it in March, is that three years you've been on it for now? I'm sure the side effects will be kinder to you! I think I've just been unfortunate already having osteoarthritis since in my twenties and the drug accelerating it! Also the cirrhosis in the liver was not only caused by the cancer drug but by the anti inflammatory drugs I have been taking for years but I can no longer have them because they are affecting the liver and because I can't take these, the pain is worse. It's a combination of things, not just the cancer drug, so hopefully you will bypass these and be alright! Does it sometimes feel all a bit surreal to you?

Hi Annette, its 9 months of the targeted treatment you had, then 12 months of Pembro, a lovely years gap, (plus a month of phaffing around) then 16 months and counting now of  Pembro again. It does sometimes feel surreal, being no measurable disease is not what either of us expected after hearing the words incurable and having the drs chatting about life expectancy. It seems a long time to be on treatment though and where as I rushed to get off it the first time I have very mixed feelings this time that I’m over the year that I had last time, so I’m bored now and want to try and get of the treatment merry go round, and then apprehensive to not do a full two years, this second time, they are going for one year from the surgery I had in March.

The end of treatment’s in site now it won’t be long till Xmas, then the Easter eggs will be in the shops to remind us. That seems a funny way to talk sometimes, after at one time thinking Xmas 2015 would be the last Xmas. I hear the phrase you only live once a little differently from a lot of people thinking do we ? as it seems like it’s a second chance, or should that be 3rd. I dislike all the cannula stuff and scanxiety stuff, the hospital is 30 miles away so I feel I need to take advantage of making the trip a nice trip out as well. To explore those places I might not have thought to go to if I wasn’t also travelling to the hospital.

Drs are talking with immunotherapy of long term remission and possible cure for those of us lucky enough to be complete responders (about 20% at the moment?) but that’s a whole different mind set to get into, especially after being let down once. Hope is a great motivator though so onwards we go. 

I had a face book notification the other day from 2015, the year my mum died and I had my incurable diagnosis, the notification was that the picture that got the most likes in 2015 was a picture of my newly fitted kitchen tap, now that’s surreal ! I was contemplating a new kitchen and went for just replacing the tap, I will have to get to grips with revisiting the new kitchen idea.

Hi Annette,

thank you for the post it is helpful to others.

have a lovely holiday in Salou. The weather will be better there our warm weather will be gone soon.

you have had a rocky road and the main thing is you are still here.

i also had spinal,surgery and have osteoarthritis I recently had an MRI of my whole spine and have a lot of protruding discs and osteoarthritis  the good news is there are no spinal mets. I have decided to give up horse riding and jogging but still swim every week.

luckily ai can still walk my dog every day.

I have had RFA 10 times for my lung mets which I believe has kept me alive for the last 10 years. Now things have progressed more and I have larger lung mets and a liver tumour I have headaches and think I should have a brain scan. One of my worst disabilities is double vision which the eye hospital are very slow t do anything.

however I enjoy my life and am looking forward to my daughters wedding next year. We have good holidays. We have just come back from 5 days in Brussels and enjoyed the sights museums and the food. The Eurostar did break down on the way home and we had to get off and wait for another train !

apparently it happens a lot.

enjoy the life you have for as long as you can 

love Ruth xx

Sounds good Mrs, and very jealous of the trip to Spain you've got coming up! Next weekend I get to go home to Edinburgh though for my nephews 5th birthday party. So that'll be fun to watch him enjoying! 

With your Christmas Market trip, why not come cross country and visit Leeds, York, and Harrogate markets too? I'll join you for a sausage and some fried potatoes with garlic sauce down in Leeds if you do! Lol

Have fun! 

Lass

Xx

Hi KT, My oncologist did say that most of the people who got onto the Trial for the combo Target drugs, were on them for 7-9 months before either they stopped working or came off because of the side effects! I didn't pass the screening for the combo, so my oncologist fought to get me the Dabrafenib on its own and I was on that for 3 years 6 months before I had to stop it! At the time they didn't have any figures or percentages of how people responded as there was very few people on the target med alone. When I read about your FB notification about your taps, I had to smile because that was obviously an important event then. Oh how our perspective changed after dx!  I was told I probably wouldn't see in the New Year of 2014, so I expected Christmas 2013 would be the last one with my family!  Regarding how long to stay on treatment or whether or not to come off it, I fully understand what you mean! Although the oncologist, my husband and I had a long discussion about when I should start immunotherapy, I was the first one who suggested "wait and see"! My husband was in shock as he thought I was ready to give up! I reminded him he should know me better than that and at the first sign of a setback, I said I would either go back on the same drug or start immunotherapy immediately! Only then did he come around to my way of thinking! My oncologist said she would support whatever decision I made! As you say, it's not long until March and who knows what you will decide then! I hope it's all plain sailing from now until then for you! 

We are so very lucky still to be in this position, long may it last. My oncologist calls me a pioneer because nothing was known about these drugs at the beginning, so how do you feel about being a "fellow pioneer"!!!

Hi Ruth, You are the pioneer ahead of KT and myself as you have been fighting longer! It's great you have no spinal mets, long may it last! Now scaremongering is the last thing on my mind but it is so long ago this happened, I don't expect you remember but if you read the beginning of my profile page it will refresh your memory!   I had been to the emergency eye clinic about two months before the screening and was told I had inflammation in my eye! I asked if this could be connected to MM on my brain or in my eye and I was told I had a good imagination! They also said ocular mm was totally different to any other mm as it didn't spread to the eye but in fact started in the eye and stayed there! I had had four appointments but It was only when I saw the opthalmologist doing the screening, I told him how worried I was. He did say that what they had said was normally true but there was always exceptions. He then asked if they had scanned my eye and when I said no, he was shocked and arranged for it to be done right there and then. After lunch he had the result and MM had spread to my eye, which ruled me out of the trial! As I said, I don't want to scare you but if you haven't had a scan or ultrasound of your eye or eyes, then please insist on one!  I was 8 months on the drug and suddenly I had my vision back. I still go six monthly to Opthalmology but insisted on a different consultant because I had no faith in the original one, as you can imagine!

What a shame the Eurostar broke down but at least it was on the way back! When & where  is your next jaunt to be? Good luck with your eyes, I do hope it is something simple but better to be safe than sorry! Take Care 

Hi Lass, It's a shame that when you come to Edinburgh we will be in Spain! Maybe next time we could arrange to meet while you are there! You know there is nothing I'd like better than to meet you for a sausage and fried potatoes but we are only there for a short time in Manchester and there's so much to see. We've never been there but we have been to York and Harrogate before. If it was in the summer, it would be different but in December we won't be travelling about! Have you been to the Christmas Markets? We have been to the ones in Berlin (stunning but freezing) Madrid, Barcelona and Aviemore, we just love the atmosphere! 

Enjoy your nephew's party! Did he start school in August? He must be very special when you are travelling all that way to be with him!

Hi Annette,

thank you for your reply. I am going to ask for a scan . I will,let you know how it goes.

Yup he did! I think I sent you pictures in reply to yours..... Though my head has been a bit minced lately, so who knows what I have and haven't done! Lol

And I was up in May for his younger sisters birthday too. If given enough notice, I try and get to all big events so there's a relationship there. I don't want to be the odd aunt they only see once a year and feel awkward talking to. I have some of them myself, and it's not how I want to be. 

I'll be up for a weekend in October, but that's fairly chokka with a second hen do for their Mum. So Spa and afternoon tea, then drinks, and hopefully a meal out too on the Sat. Babysitting and a special fish and chip meal - CHIPPY SAUCE! Then a bday meal out for me on Sunday.

But the week of the 19th of October I'm up again for the week. Got a couple of things planned, but thought I could maybe throw out an invite to folks and see who is free. But it would need to be a weekday, as both weekends are full of wedding prep. 

Lass

Xx