Fingers crossed for Bjeans/Beth and husband today!

Posted By
Bubbles
2/14/2018 12:07pm
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Replies: 15

Hoping you hear good things at your doctor visits!  Happy Valentines day to you all.  Celeste

What a nice post to see when opening up the board. : )

A big whew: the PET CT was clean. We met with the oncologist first and his first words were, "So here's the good news."

Plan is SLNB and WLE asap, no surprise. The only wrinkle (no pun intended) is the surgeon will also bring in a plastic surgeon. The current incision is 2"+ on the upper chest. A plastic surgeon can rotate skin flaps to have a closure that won't be as long and can better heal, because simple closure of an ellipse can be so tight there can be wound healing issues. (My interpretation: there isn't as much stretchy skin near the clavicle as on other areas like the stomach.)

Celeste, btw, as of July 2017 (?) they stopped doing CLNDs; the oncologist mentioned a study you discussed. 

When directly asked about studies there or elsewhere, he explained they are doing a study comparing Opdivo vs. Opdivo and Yervoy (modified), and said that going elsewhere for studies was "patient directed." He wants the surgery done asap.

J.Bun, you were right about this center. Our experience was extremely positive from the first moment, not that being warmly welcomed and the staff kindly laughing at my lame when-nervous jokes affects medical outcome. But it can sure brighten a frightening time. (A receptionist wore a big "Cancer Sucks" button.)

With practically no wait time, we met with the surgeon, oncologist, dermatologist (director) and nurse navigator (patient advocate) over 2.5 hours. Dr. Venna examined every mole and recommended it be done every four months.

The nurse navigator went over logistics and gave us detailed sunscreen instructions. She emphasized repeatedly that we could call her for anything as often as we wanted - that one person who said he wouldn't need to call, called her six times after he left his first appointment

A large packet of info was provided, including diagrams and pictures that were referenced, articles, potential outcomes of the SNLB, support group info, etc. A 55-page patient journal is available.

David and I agreed that everything there aligned with the info and education provided here and on your blog, Celeste. We were able to keep up with the doc talk and ask questions without feeling overwhelmed because of it. Thank you, thanks to all of you to whoever you post to and whatever you write. You rock. (More cowbell!)

Next step: surgery, then meeting with the surgeon and oncologist about a week post op when pathology report is back and then next steps, when we will be overwhelmed again, but that's okay. 

Beth

Happy Valentine's Day to all of you... Beth ,I am 6 days out of my CLND of my right groin.  I have been up and around about 2 hours a day with JP drain in place. Have to rest often but getting things done.

The pain isnt as bad as I thought it would be.  Pacing yourself I think for us is the key and of course keeping good thoughts and saying your prayers always helps.  

Personally, waiting for the other lymph node path reports which I am staying positive about the results as my PET and brain MRI were both negative.  

Hopefully , the drain will come out Feb 20 and see the oncologist Feb 27 to start on Opdivo shortly after.  

This board (forum) and all the patients here have been amazing .  Always learning and trying to keep up with all the latest definitely give us hope for our future. 

Good luck with your surgery and oncology follow up.  As my father used to say "how do you eat an elephant?.. one bite at a time".... lol.. 

Dessie

Back at you, Dessie (Valentine's Day). Hang in there, feel good (come quickly 2/20) and nibble away at that elephant. 

Beth - glad you husband had a positive experience, and now an action plan to move forward! 

- J.

Thanks, and yes, chafing at the bit and should hear from Dr. Hafner's scheduler tomorrow. Btw, we saw Drs. Venna, Hafner (surgeon) and Jang (medical oncologist), as well as Sue Frank. Best advice from Dr. Venna to my husband: "Listen to her." (Me)  I mentioned your good review. 

 

Excellent!!!  Well, as excellent as things get in melanoma world.  I wish you both my best.  Ask more questions as you need.  C

Total of topic link for you Celeste, thought you might find it interesting, immunotherapy research big picture article!!! https://academic.oup.com/annonc/article/29/1/84/4693829

 

 

 

 

Thanks for sharing, Ed.  Have had a crazy day.  Blog explains.  But... I read.  Printed.  Then re-read your article.  I have yet to find time to discuss with B. Very good stuff.  Some info - concerning.  Too many studies.   Too few that are meaningful.  We need some head to head - apples to apples stuff.  We do not need a zillion formulations of the same product.  I feel a blog post coming on!  Can you feel it???  Saw my first crocus in my yard today.  Happy spring!! love, c

The article makes me think of the Klondike gold rush in the Yukon, everybody in a rush but wondering how many have a plan. Nice to hear you are seeing spring in your part of the world, I had my snowblower out 3 days ago!!! Tim Horton's coffee company is running their "Role up the rim to win prizes" promotion, so far my 9 year old daughter and her hot chocolate addiction is leading the way with 3 winning role ups!!! You can win anything from a free coffee, two so far and a one donut, to a new car!!! Much Love from the North!!!Ed

Donut... car... donut... car... hmm, hard choice but enjoy either or both!

Beth

Brace yourself; I'm sure there will be many. And again, thank you. Thinking about how a couple of weeks ago SLNB, WLE, blue dye, tracer, CLND, Geiger counter, etc. were not in our most frequently used word list. Found your acronym list, btw.

Of course we will not be surprised if a nodule or more than one is positive, and that's when the questions will hit. I know blood work would be done (BRAF and more) and was told by our "navigator" that the oncologist has different treatments in his arsenal, but knowing if this small specialty center will have the best for my husband will be an underlying (or would it be over riding) question. 

Acronyms....a sense of humor helps!  Ask what you need as you go along. c

Hey Beth,

I was reading your original post and I can confidently say that I've been where you are and also that you couldn't have better advocate and information source than Bubbles/Celeste, she understands the current research like no one else.  4 years ago, in February 2014, my husband had a 19 mm tumor (yes, I had to tell people there wasn't a decimal point missing including the new dermotologist we use for regular chekcs) discovered with a mitotic rate of 9.  I think after they removed it it was 22 x 20 , I still read the pathology report occasionally.    I'm a medical librarian who is now in clinical trial research at UM so I had some inkling of how bad all these prognostic indicators were when he handed me the pathology report from his punch biopsy before we scheduled anything at MD Anderson. I also remember reading all the research regarding prognosis and what factors play into better outcomes (thickness, mitotic rate, etc)   But I can report, that we are four years out NED from that moment, with scans every three months first two years and now every six months.  I can remember sitting with Dr. Amaria in February 2014 at MD Anderson and thinking this is it but somehow we've taken a different path to date. 

I truly related to your story and hope you have the best results soon. I can completely relate.  Please reach out if you need anything.  We still have our home in Houston, so if you all need anything, we are there. 

Keeping fingers crossed for the best news.

 

Jackie <3

Hi Jackie, and thanks so very much for reaching out. David will enjoy your post too. Interestingly, mitotic rate was 12 on the path report but 6 on the PET CT. A doc explained it but my notes only say "which portion slide." In any case, I think he said not to make too much of it. (I brought my iPad and a separate keyboard to take cracker jack notes but listening/thinking/talking/typing made for occasional creative wording, including a snippet of Beatles lyrics.)

How terrific for your husband to be four years NED after a no-decimal 19! And you chose a perfect place to live too, didn't you, if you have to be in this club. 

I just want the surgery to be done. It will be a couple more weeks since two surgeons' schedules have to coordinate. Our surgeon's scheduler is a sweetheart and I know she's on it but this isn't the most fun I've ever had. The oncologist said he wanted it done fast so I hope two weeks or more isn't considered slow. 

Beth