Ellenb626

I didn’t get any email from them but I like the old layout of the forum.  It was user friendly and much more welcoming.

Hi Clare,

My melanoma decided to spread to my left lung.  I had a ct scan in June 2021 that showed a nodule there that grew to 1 cm and the oncologist wanted me to go for a ct guided biopsy of my lung to confirm if it was melanoma or lung cancer.  It was melanoma.  I was given a choice Keytruda or lung surgery and I decided Keytruda.  I had enough surgery in my life and the idea of recovering from lung surgery didn’t appeal to me.  Plus the oncologist said if they removed the mass there was a 15 to 20% chance it wouldn’t come back.  I decided on the Keytruda.  to date I have only had one infusion and my side effects are itching and a rash.  Sometimes the itching is really intense.  I called the oncologist and he prescribed a cream and I take benedryl at bedtime.  It makes me sleepy during the day.

Good luck.  If you have to go for a ct guided biopsy the recovery is really easy.  One day of sitting around watching netflix and I was lucky a very small black and blue mark that healed quickly.  i can empathize with you on how nerve wracking it is until they confirm what is is and decide how to treat it.

Ellen

Typo arranged everything
one sentinel lymph node troves with 6mm of melanoma which made me stage 3b. Fast forward 2 years later and the melanoma spread to my left lung 1/2 inch big andI am now stage 4 and getting immunotherapy- keytruda. Sorry for the typos, typing on an iPhone is annoying.

My melanoma was stage 2b but because it was near my left armpit the dermatologist said they would probably check the lymph nodes.  As soon as I heard the word melanoma and the dr told me I needed a WLE, I called MSK  and had the slides sent there and the surgeon arènes everything. The surgery and the lymph node scan and removal  was done at the same time. The oncologist is also a Sloan doctor. All of this is covered by Medicare and my insurance.  I think dealing with the insurance company and make sure all the information is sent over is very stressful. I don’t know where you live but I would tell you to go to one of the major centers that treat melanoma.  Sometimes a second opinion is well worth it. Also ask the doctor all your questions and bring someone with you. Good luck

Hi Jeanie.

I had one sentinel node in my left armpit removed 2 years ago when I had a WLE for the melanoma in my upper left arm.  Yes after surgery my armpit hurt and I used an ice pack.  Then it stopped hurting and I have no swelling and no problem.  I just have a line from the scar.  I found exercise was very helpful to my recovery.  Good luck.

I also find it annoying.  I like the old forum better.  It was more informative and easier to use.

Hi HBS,

After I was diagnosed with melanoma, I called Memorial Sloan Kettering and arranged to have all the information they needed- pathology and ct scans sent there.  They looked at the information I submitted and made an appointment with the surgeon.  I   I would call which ever institution you are considering ask them what information they need, send it to them and go with a whole list of questions.

Good luck.

Ellen

It ‘s easy to say don’t worry till you know definitely. If it is melanoma don’t be afraid to go to MSK. I go there and they did the surgery. Their system of assigning you a surgeon may seem weird but they do iron a timely fashion. I think I called on a Friday and they set up the Dr appointment for the following Wednesday and surgery 2 weeks later. Good luck.

It ‘s easy to say don’t worry till you know definitely. If it is melanoma don’t be afraid to go to MSK. I go there and they did the surgery. Their system of assigning you a surgeon may seem weird but they do iron a timely fashion. I think I called on a Friday and they set up the Dr appointment for the following Wednesday and surgery 2 weeks later. Good luck.

I also live on Long Island and go to MSK. It is worth the trip into the city to go there. They can do the scans on Long Island you just have to ask and they arrange it for you. I have my scans done in Uniondale and I see the Doctors in NYC. They set up the appointments and everything for you. I know getting the diagnosis and scans at the beginning is nervv racking but you have nothing to lose by call them up and making an appointment there. I think my email is with my profile if you want to contact me. Try to stay positive (easier said than done) I have stage 3b melanoma and so far so good. I am NED.

I also live on Long Island and go to MSK. It is worth the trip into the city to go there. They can do the scans on Long Island you just have to ask and they arrange it for you. I have my scans done in Uniondale and I see the Doctors in NYC. They set up the appointments and everything for you. I know getting the diagnosis and scans at the beginning is nerving but you have nothing to lose by call them up and making an appointment there. I think my email is with my profile if you want to contact me. Try to stay positive (easier said than done) I have stage 3b melanoma and so far so good. I am NED.

I had a melanoma removed WLE on my upper left arm and a sentinel node biopsy in June 2019. The first 2 weeks were tough, I took Motrin and Tylenol and spelt with an ice pack in my armpit. The doctor told me not to raise my arm over my head or carry anything heavy. There was cording when I went back to him after two weeks but it went away quickly. I’m not sure if water aerobics (arm exercises) or swimming helped it but my arm felt better after the exercise. Also wear blouses instead of t-shirts lifting your arm up hurts until are ready. Hope this helps.
Ellen