Captain Serious

Mike, how about having some additional engagement & support from the staff; I suspect that a nurse, MA. Navigator. etc. would help in any way they can during the process.

My hospital’s Siemens Biograph IV Combo PET/CT Scanner doesn’t have much depth; if is possible to see forward & aft without great difficulty.

Listening to music with eyes closed beneficial. Might be easier said than done…

Meditation does work. Maybe do :10-:20 minutes before bed or whenever to break in. I recommend Insight Timer app for iOS or Droid. Imaging Center will accomodate you I’m sure.

Just another challenge we all are compelled to work through as best we can. It’s what we do in our new order. Best of luck, Mike.

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!

Have to ask: is there anything else going on with your drugs, side-effects, etc. that might indicate high blood sugar? Mine got so high shortly after pembro treatment that I thought I was going blind. I was, in a sense, but issue attributable to elevated glucose. In my case,was a secondary / tertiary side-effect. Pembro begat a host of side-effects, lIchen planus (super-rash) among them. Then came steroids to treat, then elevated blood sugar which indirectly changed focal length of lens. Returned to normal after treatment. Just a thought.

Good Day, Tex!

I started Keytruda infusions in early March of this year; believe I just completed #9 or 10 yesterday. Had a PET, (2) CTs & MR after about 5 infusions. Tests indicated that Keytruda was working with good results: lymph nodes shrunk back to normal size.

I have plenty of side effects that make life a bit more difficult, but are manageable so far. In order:

Dry Mouth / No Appetite / Weight Loss: Started out slowly in about month 2 and has gotten worse: I've lost 20 lbs in 2 months as a result. Totally dry mouth has caused some choking; I always have water at the ready now, and most foods taste like a pillar of pure salt. Salads are good – with protein. If it manifests itself, carry water with you at ALL times, stay hydrated & have Biotene mouthwash with you, in your bag, in the car, etc. always. Maintain oral hygene as saliva waorks against cavities – brush 3x daily, etc.

Elevated Blood Sugar: Started month 7 – Onco has referred me to Internist to get this down.

Nocturnal Urination: Started approx month 7 – 4-5X/night. See Blood Sugar above.

Fatigue: 1st symptom; started almost immediately. Not a big issue; Starbucks Grande mid-PM helps; a one-hour nap gets me back up & running.

Nausea: Started in month 7. Rarely results in vomiting; just uncomfortable. Referred to Internist

Insomnia: Usually tired when I go to bed, but difficuly getting to sleep & staying asleep.

Rashes: Started about Month 3 – forearms & legs for me. Not a huge issue.

None of these issues are severe, although the eating/weight loss is getting close and I spoke to a Registered Dietitian for assistance today. You just keep on the lookout and deal with side effects as best you can.

For me so far, Keytruda appears to be working and the side-effects are just things to manage.

God Bless. Give it Hell, Tex.

Can others identify with a 3.15+ mm growth being excised with 2cm perimeter? I might be mistaken, but that sounds like a modest excision.

As I recall, my first growth, on my forehead, was abt. 1.1 – 1.2 cm. The next step for me was a major excision – about 2.5" x 2" elliptical 'divot' out of the forehead, along with Sentinel Node Biopsy. Given the 1.8, I'm surprised that no SNB was done, but I don't presume to be an expert on the subject. I had a few nodes left-side pf neck light up, but path reports were negative.

About 1 year later (Jan 2017), I noticed a lump under the jaw on right side & biopsy revealed the same melanoma from previous year. That begat Radical Neck Resection on the right side. Subsequent PET, CT, MRI showed micrometastasis up near R ear at the end of the resection area & a swollen lymph node in a great location behind sternum between lungs.

After 5 Keytruda infusions, the micrometastasis is gone, the node shrunk 50% to normal size and all scans are clear.

All this to say that maybe checking nodes is a good idea. Again, I'm no expert and I'm not a huge fan of these node biopsies, but maybe it would be best. 

No nausea for me, thank God. Most notable side effect is fatigue, which usually shows up big-time in week 2 of the every three week infusion cycle. Get home from work, proceed directly to bed for a few days during that week.

Also, torrid case of dry mouth has manifested itself recently. I do Biotene mouthwash, toothpaste, etc. and they improve the situation.

I'm not complaining; it beats the alternative.