Sissi

if you allow, I will reply in French as it is probably easier for you and I. I’m in Montreal. Long story short, I’ve had both after a recurrence in a lymph node (from stage 1). So my history is similar to yours.

D’abord, on m’a donné la thérapie ciblée, pour voir si le ganglion où on avait découvert une récidive pourrait complètement disparaitre de cette façon. Résultat: je n’ai presque pas répondu à la thérapie. Ainsi, j’ai eu une CLDN à l’aine et j’ai depuis presque un an de l’immunothérapie aux deux semaines. L’avenir dira si c’est efficace.

Pendant les trois-quatre mois où j’ai eu la thérapie ciblée, j’ai eu plusieurs épisodes de fièvre, fatigue, vomissements. Rien de grave, mais rien d’agréable non plus. Depuis que j’ai l’immunothérapie, je n’ai eu aucun effet secondaire. Les injections sont rapides (30 minutes), je fais ma vie. N’hésite pas si tu as des questions, mais honnêtement je m’en suis remise aux médecins pour ces décisions.

Hi,

I was exactly at the same place a year ago, waiting for that lymph node biopsy result. Turns out I was stage 3 (you may not be, though), but after all I've been through this year, waiting for that result was the worst. I still cannot think about that period of time without feeling bad, I was in such a bad place, scared and sad, like you are at this moment. I'm 39.

I am fine now and you will be too. You don't have to be positive, it's ok to cry, to be scared, but remember that this state of mind will not last forever and do get help if you can. You will be better soon, the doctors know what they are doing and you are not alone.

It is hard to stay off the internet, but stop googling, it was the best advice I was given: Google doesn't know your future, you won't find the answer there.

As for your kids, they will be ok too, I find kids are better than adults when it comes to cancer.

Marie

Hello Clare,

I know exactly where you are, since I had the exact same procedure one week before yours. I had two drain at the beginning, one was removed one week after surgery, but I still have the other one. I see my surgeon today, but it is still draining a lot and I'm afraid (it is the word) he will leave it on for another week or so.

I do get the burning sensation and I have numbness above my knee. I feel like things haven't progressed much in the past week. I usually jog and walk a lot, but so far I just managed to walk very slowly, and short distances. There is so much reading and Netflix watching one can do. 😉

How long are you off work for? I got six weeks but knowing me a bit, my surgeon said that maybe I could go back after four weeks… but I'll take the six weeks I think, even though I am looking forward to go back.

Stay patient, I'll try to do the same!

Marie

Hi,

I can certainly relate, as I had a recurrence this year. After 11 years at stage 1, melanoma showed up in a groin lymph node. I'm about to have a LND, I am stage 3. From the moment I felt the node and knew melanoma was back to the final diagnosis, more than 4 months passed.

I know where you are. It was tough waiting for the biopsy report after the ultrasound, then wait for the results from the CT and PET scan. I kept crying. At home before going to work. On my way back home, and after I put my daughter to sleep. I spent hours in the early morning looking for answers on the internet.

I just reread stuff I wrote 8 months ago and the words "I am so tired" and "I can't stand this anymore" come up all the time. I am way, way better now. You will feel better too, but it is tough in the meantime.

I wish I had advices for you, I have none, except don't Google too much. I'll tell you what my dear oncologist told me the first time I saw him. He said "the game has changed for melanoma". People will take care of you, professionnals who know what they are doing, you will have a plan sooner than you think.

Hi Jennifer,

I read your post just after an early morning CT scan. I too like to hang around downtown after or before a scan. Today I had a much needed coffee, then went to do some shopping which cost me waaaaay too much. Next scan I guess I’ll have to head home right after… 😉 

All the best for your brain day! 

Hello,

I believe everybody reacts differently to the meds, but here is my experience so far.

I've been on Taf/Mek for almost two months. The first month I was my normal self, but around week 6 I started to have chills twice a day and a fever that wasn't going down, even with Tylenols every 6 hours.

After spending a whole day in bed with fever, I stopped the meds for two days as my oncologist had told me to, went back on the meds and since then I've been ok, apart from a little bit of tiredness. My oncologist told me it was the right thing to do, as he prefers that I stop the meds for a few days instead of having to reduce the dose.

I was off work when the side effects happenned but I'm going back Monday and will deal with what comes to me in terms of side effects, but it is reassuring to know that I can stop the meds if needed. But apart from those two days of fever and some flu like muscle pain once in a while, I'm fine.

I hope that helps a little bit. I am stage 3C. I live in Canada also, Montreal to be more precise. Where about are you?

If I may chime in, I am stage 3 and my doctors choose not to resect my lymph nodes (in groin) straight away and put me on targeted therapy first so that the tumor will reduce in size. After a month, it has already started to do so.

My oncologist is now thinking about switching me to immunotherapy before any lymph node dissection is performed. He says it is my best chance at being eventually cured and preventing recurrences. I'm from Canada and if I get the surgery, then immunotherapy as adjuvant treatment (outside a clinical trial) is not an option anymore.

Of course the choice will be mine in the end, as it will be for your sister. For myself, being 39, watch and wait is simply not an option.

I waited 3 weeks to get that biopsy result last year, but my doctor did tell me it takes time, no matter what the result is. I was frantic, called my gp almost everyday. They will not forget you, rest assured. 

Clare, if I might add, I met with my surgeon yesterday and he did take the drain out even though it was still draining about 100 ml a day, beacause he said at this point it was becoming a «highway for bacterias».

Also, I did tell him about all the weirds feelings and some pain in my leg. Basically he said that everything was normal, and that I would have to be patient until it comes back to something that looks like before. There was no time frame given.

One thing I did find encouraging, was that he assured me that I could not move too much. He even said I could go jogging if I wanted, that there was no medical reason to tell me not to.

But I'll still wait a few more weeks for that… 😉

(Also my pathology report was the best I could hope for, I am officially NED, that is the most fabulous thing I've heard in a year. Wishing you the same.)

All the best to you and your sister. A diagnostic is overwhelming at first but I can say from experience that it does get better with time.