Results post SLNB/WSE - scared

Hi SED76, I'm sorry to hear about your husband’s diagnosis, and know it’s a struggle getting your head around everything. I’m the patient and my lovely husband is my biggest support. I’m further on from your husband though as my melanoma was discovered by CT scan and then needle biopsy and was showing up in many lymph nodes back in 2015.

I have scans every 3 months to monitor if there’s any enlarged lymph nodes showing up anywhere else or any organs affected. It’s a good sign if your husband is feeling well, it’s not a bad sign if he isn’t though as we nervousness can do that. At the start my husband and I were both being strong for each other but it meant we were avoiding talking about melanoma, we had to make a time to just both of us talk it all out and agree the dynamic of both of getting the info we needed. I hated him butting in sometimes, but needed that he heard all the positive stuff when at times I was hearing all the negative stuff. For the scans I have my chest abdomen pelvis, done in one scan so don’t wear an metal in that area when I go for a scan, so I don’t have to spend time getting changed. I am mindful to drink water beforehand so my veins are bigger to allow the cannula go in easier. I need to drink water afterwards as well as I’m type to diabetic and need to flush the chemicals / glucose out of my system.

The further op that the consultant mentioned is a completion node dissection, it removes further nodes in the chain where the sentinel node was positive. I haven’t had this op as when I was diagnosed there were too many nodes affected. A few years later 2019 ? I had one node removed and a full dissection was proposed at that time but after discussion between surgeon, and oncology and me due to my history of it not just being in one area I did not have that op. You can put it into the search bar to find other conversations, and find others who have had it, it was the only treatment to prevent things spreading at one time, but now with adjuvant treatment with immunotherapy it’s not very frequent done now. 

You might have found the Macmillan information and support pages which goes over, well everything. I also like the melanoma focus pages

https://pda.melanomafocus.com/stage-three/

It explains stage 3 and goes through the completion node dissection and the adjuvant targeted therapy tablets Dabrafenib and Tramatenib that you take together, and Nivolumab the drug you have by iv, and Pembrolizumab a similar drug again by iv. 

The preventative treatment is for a year, where as when people are stage 4 there is no time limit on the length of using the drugs but due to long term side effects people are given the choice to pause at 2 years or continue. The reason I mention the difference is because we have all stages in this group and didn’t want you to get confused. I usually look at peoples profiles when they reply to me as that gives me context to their reply. I notice you haven’t done your yet so you may want to jot a bit of what you’ve put in this first post into your profile. You find it my clicking on your user name, hit the edit button and hit save before coming back into the group. I’ve edited mine lots of times as I’ve been in or sometimes quietly looking at the group for a few years.

I had Dabrafenib before the 2nd tablet was available back in 2015 and it worked very quickly but it’s only for BRAF positive, which is about 50% of us that have a mutation in that gene. I will be having Dab tram after surgery in October as I currently have 8 lymph nodes enlarging. I’m currently on Pembrolizumab which again worked really well and I became a complete responder, no evidence of disease on ct scans and I had  a year of being drug free. Unfortunately after having a break in treatment again during covid times it has returned in small amounts and I’ve been back on Pembro but it’s now time to change for me after tomorrow’s last dose (no 57) 

How well these drugs work and which side effects people get is still a mystery but my drugs worked well then ran out of steam, and side effects have been minimal for me. I lost every freckle, and lost underarm hairs on dab, and when I started Pembro underarm hair grew back, my hair went curly then went normal again. I had an all over body rash and I’ve felt tired for a few days after each dose. The teams give the patient a 24/7 number and they give advise on every side effect and encourage you to report them and let them help you. 

I hope some of this helps, and there are others who can join in with their experience and any specific questions you might have.

SED76

Hi Saffy

I was wondering how you and your husband were doing and if he'd started treatment or had further surgery yet?

Take care

x

Hey latchbrook, 

thanks for reaching out - so we met with our oncologist and we start treatment on the 5th November, he will have 12 months of Pembro every 6 weeks; I’m glad we have a date now and a plan - it’s all pretty daunting still but positive his CT was clear and we can start moving forward….. 

thanks again,

Saffy 

SED76

Hi Saffy

That's great to hear that your husband's CT scan was clear. Hopefully that gave you both a little boost.

There's lots of people in the group on Pembro so if you wanted to ask any questions about that particular treatment you could start a new post.

Do let us all know how he gets on.

x

1. SED76 same as me x clear ct scan so on pembro for 12 months ( 9 doses every 6 weeks) x 

Amccl, have you started your treatment? Thank you for replying. Also latchbrook, thank you too for messaging - Will let you know how we get on. 
thanks for your support. 
Saffy 

@SED76 yes I have I have had 2 doses and have been physically absolutely fine a little tired sometimes but nothing major  x mentally…. Struggling with worry and my thoughts x so I am due a ct scan in 2 weeks then my 3rd dose of pembro the week after so feeling very anxious about the ct scan and praying that everything is still all clear. X 

Keeping everything crossed for you - I find the mental stuff really hard - it’s a battle with feeling relieved that the ct was clear but fearful of that changing. Thanks for replying, take care x 

Yes this is me also! The mind is such a powerful thing and it’s true you find relief in a clear ct scan now I am worrying about if the next  scan will still be clear x 

Hi SED76, I was diagnosed in April with stage three and although I'd had CT, MRI and PET scans pre surgery I was made to have them again before starting Pembro. I have cancer in the sentinel node and in one of the two next to it.

I had a wide excision alongside the SLNB but no further surgery.  I'm two doses in now and apart from achy limbs for a day or two afterwards I've had no others side effects luckily.  I have my bloods checked 3 or 4 days beforehand then go in to my local chemo unit.  I have a half hr of fluid then half hr of Pembro then half hr of a flush. Very quick really and all staff are great.  I will be having regular scans to check for any spread. Presently I'm having Pembro every three weeks but if it's tolerated they will double the dose and only want me every six weeks. I'm sort of getting used to it now and don't feel I have cancer!

Generally I'm well, fit and active (even at 58) and until and if I get a recurrence I'm going to try and be positive.  I've found that after the initial shock and funeral planning I've relaxed into continuing my normal life but I'm am also (as a palliative care nurse) choosing songs for my own funeral and wake anyhow as it's a job well done in advance! Take care and good luck x