dont know where to start

hi Tvman, 

thank you for your reply, ive been here a while, ive spoke to  Annette, but ive not joined in a lot as Im not good at this sort of thing, and you are so right there are some of the nicest people on this sight, and helpful, 

Max

Hi ,

Have you tried talking to KTatHome?  I know that she pops in here now and again but she is often on the melanoma forum.  If you click on her profile I think you might get some of the answers you are looking for.

All the best for your treatment.

Gragon x

Hi Max  Oh I'm so pleased they finally contacted you and have a treatment plan for moving forward! I've not been on an immunotherapy drug myself but do know lots of people who have had great results with them. Some with and some without side effects! Hope you will be one of the ones without any severe side effects, just ones you can cope with! I'm sure others who have had these drugs will post when they read your post! So you've not got a start date yet! I don't think it takes too long for drug to go in with IV. I'd say take a good book, or iPad, Tab or similar. Maybe some music and a snack. When your appointment comes through, just ask what you should bring with you! I'm sure they will give you good advice!

I do hope you won't have to wait too long this time. Especially with Lockdown easing a bit!          Please keep in touch! You are in my thoughts and prayers (they can't hurt!).

I’m on pembro and have been since Sept.  initially it was with chemo too so was never sure if the side effects were chemo or immunotherapy ! Since covid I am only on immunotherapy .  And so far side effects have been super minimal!  A bit tired first couple of days after treatment, my skin is v dry and my eyes water a lot - so not bad is it? It takes about half an hour to go through so not in the hospital for long at all.  I hope it goes well xx

Hi , I’m sorry I’m late popping into this conversation. I was on Dabrafenib for only 9 months when a spread occurred to my ovary, I started Pembrolizumab the first time in 2017 and became a complete responder (no evidence of disease) on that drug for a while. When I started Pembro it had only just become available on the NHS, I took my inspiration from Jimmy Carter the ex president of USA who had melanoma that spread to the brain and with cyber knife and Pembro he became NED. 

I haven’t had treatment during Covid 19 as I’ve been on a break since Feb, but I have been in for a scan and blood test last week. At my hospital they have moved the unit where treatment and blood tests are to nearer the carpark so that people don’t have to walk into the main hospital but into a self contained unit where people observed the 2m rule going in and out, and along the corridor and seats are placed further apart. 

When I have treatment it only lasts a short time 30 mins for Pembro plus saline drip before and after for about 10 mins so the longest I’m in there for is 1hr 30. My husband didn’t stay with me all that time anyway as it was better if he wasn’t there when the cannula goes in. (He fainted when our kids were born). I am thinking that I will have to resume soon, I talk to my oncologist later today. My husband can’t go in with me so as it’s an hours drive I’m not sure if he will just sit in the car park or drive somewhere more interesting to wait and come back to pick me up when I ring him. I have a mask to take with me but I think they will have some to supply to patients. I wear 3/4 length sleeves, so that they have a choice or areas to put the cannula in (my hands have from experience been the most painful for the cannula to go in, higher up my arm and sometimes I don’t feel it. I drink lots of water and take a water bottle with me as that helps with them getting the cannula in first time, although 4 attempts have sometimes been made. 

I take something with me to do, codewords usually but depending on which arm they go in writing is too difficult. I have music on my phone so that’s my current thing of choice, or a pod cast as I hadn’t listened to one of them before lockdown. Depending on the timing I take a packed lunch with me, often eating something on in the car home. I have a small bottle of hand sanitizer that I’ve usually taken, I put a few tissues in my bag for me or to open doors without touching them, mostly for the car park exit, as the unit has self opening doors. 

Side effects there’s a big long list, they will issue you a booklet and a card with 24/7 numbers on them to talk about side effects. 

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/pembrolizumab

My side effects have been minimal, a whole body rash 2 weeks after my first dose, it delayed my second treatment by a week, I was advised to take antihistamine and use aqueous cream. I get tired for about a total of 4 days after treatment, then get back to normal. I pace myself so I don’t overdo things. There’s plenty of info about fatigue management on here. The side effects with Pembro are known to be less than the combination ipilumamab and Nivolumab which most people are on. The melanoma patient conference has some videos from the conference where oncologists talk about the side effects, years on and they know what to expect and when and what to do, but not everyone has the same burden of side effects, so I hope you are lucky. Some people have vitiligo and that is said to be good as often people have a good response with that side effect, but that may be wishful thinking. 

If you want to ask anything just go ahead, I will try and look out for it, and if I can help with links to info or my personal experience that’s what makes me happy, I like to help.

thank you all for your reply's, your all on your own journeys with this bloody thing, im sorry , but you take the time to respond to questions and give advice where you can, I will look into all suggestions given, Ive never asked why me, until yesterday, ive just got on with what needed to be done, now I feel guilty for asking the question, what with having cancer and this covid its really cramped everyones life, I miss my kids and grandbabies, and I know its my choice but im thinking if ive not got long do I break lockdown and see them, I will ponder on this for a few days I think, im sorry for being a downer, I wish you all well on your journeys please be safe and look after yourselves,  

ill give you a laugh this is very polite, I want to rant and swear and shout and scream, but that don't get anyone any where  lol im sorry 

also apologise im not good at grammar and expressing things, 

Hello madmomma,

I think plenty of people on here have done the rant and swear and shout and scream. It does the world of good, I have done loads of it. Do some now but dont give yourself a migraine!

Lockdown is reducing, hopefully you will see all your loved ones soon.

Best wishes.

It’s very natural to miss you kids / grandkids. I don’t have any grandchildren but my 2 daughters are not local, ones in Japan so I would be making do with the Internet for them even if our lockdown finished. We all get days when we feel things aren’t going right and we need to get the feelings out somehow. Sometimes I write a blog when I feel like that, just lately though I haven’t felt like that either. 

Im trying to break the day up into sections, but not be too ridged, I want at least 20 mins of exercise at some point and an hour of doing something different. I’m sitting in the shade in a garden hammock at the moment, which is a bit different. I discovered English Heritage do a pod cast of walks in their grounds, which was nice as a replacement walk as I could visualise the walk at Wrest Park. I have not been good staying at home, by that I mean I like to get out and about on walks so being at home or in the garden is not my ideal choice. I’ve been encouraged to think what resources I have around me, tv, radio, hammock, garden, paint, colouring books, a guitar, my iPad and volunteering, etc etc to give me choices on how to spend the day. 

Dont worry about grammar etc, you’ve just reminded me that when at school aged 12 my history teacher was deriding my homework and said in front of the class I was illiterate, a bit of an exaggeration but the next day half the class thought I’d been called illegitimate by her, I’m not sure which my parents considered was worse for my posh school!! 

thank you so much everyone , as soon as I know anything I will let you know,  love to you all xxx Max 

Hi, oh KTatHome I loved the story about your posh school! I think a teacher would be fired today for saying something like that! Thought they were meant to encourage pupils!

Hi I told you there would be others replying that had actually been on Pembro, so that's great, hope you will start it now with a bit more confidence!