Radical neck dissection and beginning pembro soon. Any advice to make it easier?

Hi
Sorry to hear about your progression. I haven’t had Pembroke but currently on Nivo (pretty much the same) and the only side effect I had had is fatigue for about a week after each infusion. However it’s nit that bad and I still work 12 hour days and exercise 2-3 times a week; although I have an office job.. the evening after my last two infusions I have been out cycling as I felt good
Best of luck to you
Mark

After my second partial neck dissection, I needed physical therapy to restore full use of my arm on the same side. The surgeon expected that to take about three months; for me, it was five. Telling you this so you don’t panic (as I was tempted to). Full use restored, no difference there. If I had it to do over, I would start physical therapy and massage sooner, not wait three months. Wishing you the very best results!

Hi, My husband had a tumor in is neck by the collar bone and the nodes wrap around the one nerve in the neck like a candy cane so they had to remove it but he did not have a complete neck dissection. They told him he may lose some of his mobility and sensations. He also worked as an electrician. He was off for a while and did lose some of the mobility of the arm as far as it going up over his head but he managed to do his job for 2 more years until he had his 30 years in and had Stage IV and started a clinical trial. He never had Pembro so I can’t comment on it. Much luck with your surgery and your clinical trial. If you wish to read more about his journey check out his profile.

Judy the loving wife of Gene Stage IV after his clinical trial of Ipi 10 mg/kg and GMCSF and now NED for almost 7 years

I am 3B as well and had an enlarged lymph node in my neck. I had 2 rounds of neoadjuvant (not pembto) and modified neck dissection. Are you certain it is radical dissection?
I did not lose the use of my arm. I didn’t work the first week, and am working from home weeks 2 and 3. I am now in week 3. I did a lot of icing yo get the swelling down. Now I find that I have to take breaks from the computer every hour or two to rest my neck against a heating pad. I mean rest as in on a pillow. If I don’t the tension builds in my neck and that is followed by awful tension headaches. I think it’s because my neck muscles are weakened a bit.
You’ll have to ease back into workout. Turning your head will be tough, so if you cycle outside I wouldn’t. You can’t lift on the side of the surgery because you’ll rio sutures. I’m a little over 2 weeks post surgery and have just been cleared for ‘light joggung’
Give yourself time to heal. .

I had a modified radical neck dissection along with a parotidectomy (sp) followed by radiaiton. I work in more of an office setting with some fieldwork, but was able to function fine after a week. I did(still do) have some weakness in my shoulder, but was playing volleyball after 3 months ( lot of overhead movements). I took the BRAF route versus the immunotherapy route, but have had some minor and major very sporadic side effects. I am younger (35) which the doctors said would help with recovery and handling the surgery, radiation , and chemo.

Sorry for what you are dealing with KAP15! I was in your shoes, with a 10 and 12 year old and Stage 3b melanoma in 2003. However, as there was no treatment in melanoma world at that time, I did progress to Stage IV with brain and lung mets in 2010. However, in December of that year, after lung met was surgically removed and brain was zapped with radiation – rendering me NED – I was lucky to get into a Nivolumab (now called Opdivo, an anti-PD-1 product with response rates and a side effect profile identical to Pembrolizumab/Keytruda) Phase 1 trial with two arms..one for Stage IV patients with active disease and mine – for Stage IV patients who were NED. We all did incredibly well!! I remain NED for melanoma to this day, with my last dose of nivo in June of 2013!! SO! There is hope!!! You can do well too!!! As far as children, I was always as honest with them about my condition and treatment as was appropriate for their age. They know what’s going on anyway. So to try to “hide” things only increases their fear and confusion. Fatigue is a very common side effect of immunotherapy. And I had my share of that. But, being stubborn can be a boon! HA! I worked full time, with 12 hour shifts as a pediatric NP throughout my treatment.
Here is a primer on current melanoma treatments that I put together that covers immunotherapy that you might find useful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
There is a great deal of additional melanoma info on my blog. Just use the search bubble if you are interested. You can do this!!! I wish you my best. Celeste

Pembrolizumab and it’s side-effects vary quite a bit. For me, it was a real trial. The way I see it, it saved my life and was worth the downside. The most lasting effects were incredible latigue – tptally drained and feeling like I was hit by a bus for about 4. 5 weeks, but it subsided. Lichen planus, a “rash” like no other, is just subsiding Jan 2019 aften about 2 years. Much itchiness, bleeding, scratching and elevated blood sugar still cause issues, but much better with assist from Internist and Endocrinologist.

I was warned that I would most likely have major neck-tissue issues and deficit as result of Radical Neck Resection. It never happened. I still have minor discomfort two years down the line, but no muscle-tissue deficit to speak of, which surprisd my providers. Don’t know why. If that were to happen, I would agree that PT engagement ASAP would be indicated, but there are others better suited to speak top those details.

God Bless, KAP. Keep the Faith – Give it Hell!