Hey! I hope you're doing ok (all things considered of course). You knew that the pathology report would say it was cancer, right? They had the evidence it was cancer due to your punch biopsies. I guess I'm curious if there was anything surprising that they found from the surgeries because from my understanding all the pathology that came back was exactly as the doctors thought.

I went to my new pain specialist today and physical therapy. My radiation oncologist now referred me to the pain management clinic because she said she has treated me up to her knowledge level and now it is up to them now on how to manage my residual radiation pain. She said she's not very knowledgeable on long-term pain control so it makes sense I've now been turned over to the clinic. The guy was great. He was fine with me not liking gabapentin and deciding to taper off and quitting it and with continuing my oxycodone. He did say that cymbalta (sp.?) is the drug of choice for ongoing pain from chemo and/or radiation so down the road if I want to explore another option then that is what he has in mind. So anyway all in all a great appointment.

The phy therapy is ALWAYS soooo relaxing. It feels so good to have someone work and loosening all the muscles in my jaw and neck to keep those muscles good and pliable. I go twice a week and my insurance has approved me for 60 treatments so I'm not sure when I will give these up but right now I'm thinking not anytime soon. They feel good and they really do a good job with getting rid of the puffiness under my jawline by basically massaging the lymph fluid and encouraging it to flow down and out of my neck. Have you had a neck dissection? I know you've had throat and tongue but I don't remember anything said about the neck dissection.

I received a machine yesterday delivered to my home that is also being used to treat my neck/jaw lymphedema. It's called a flexitouch. I strapped that thing on and hit the power button and it was very relaxing. Have you ever heard of it? I can't wait to get home and use it again. It's not as nice as the massage but it does feel nice for my stiff neck and jaw.

Anyway I look forward to hearing how things are going for you!

Hi Virgomom,

Tuesday May 14 is my cancer surgery, much more extensive This time going after this Invasive SCC , and trying to get clear margins.
April 11 he found positive margins, Deep.

This time wider surgery, floor of mouth and he will be cutting my reconstructed tongue Flap, right in front because the tumor has invaded my Flap! Damn...

They are admitting me with this surgery..

More pathology reports will follow, and probably a new treatment plan.
I offered to do a second course of Radiation, targeted to this new area specifically .( They will have to make me a new mask).

Anyway, I will let you know how it goes.

Crystal

Crystal J,

Good luck with your upcoming surgery, and a speedy recovery!

PaulB,

Thank you so much! I don't know what your experience was, but mine is quite lonely !!! Just not much support at all, but hey, I've always done things by myself-- so goes it....

I will update here as./ When I am able.
Thank you, dear.

Crystal

Wow Ok so tomorrow is the day. Did they say if they were going to make a new flap for your tongue? Did they say how long they expect for you to be admitted?

I'm so sorry surgery recovery is lonely for you. Feel free to message me on here if you need to!

I know my story seems simple as I've had my first cancer and treatment and now am hoping for no recurrence but I do have a spot on a breast that showed up in my PET scan so I'm trying to mentally deal with that. My mother has breast cancer so why should I be surprised here ya know? lol I know I have to have a mammogram next but I'm sure that's going to be followed by a biopsy if the 'suspicious looking area' isn't completely explained away during the mammogram. So I'd say we are both not all that well mentally from worrying about all things cancer.

You got chemo right? Have they tried immunotherapy with you yet?

Good luck tomorrow and I'll be thinking of you. Hoping for clear margins and no complications and a good rebuild of your tongue!

Laura

You're not alone!!! We're all right behind you in your corner rooting you on There may not be a waiting room full of friends and relatives but you have people all over the world who have a deeper understanding of what you are going thru as we've been in that position ourselves. I didnt have lots of people to help me... pretty much it was my teenaged children. What I lacked in people to help me in my area, I made up for with all my OCF pals. They're who helped to get me thru the hardest things Ive ever done and they even sometimes made me smile (although trying to smile was painful). I cant imagine anyone with little to no help nearby and also being without the OCF and our caring members.

Good luck with everything!!!

Hello ChristineB, Paul, Laura,

Home from the hospital, ...I really don't know if anyone here has had this experience, but maybe. I might make a new Post, just to ask---
Yes, my tongue Flap is actually sutured down, To My Bottom Lip.
And it's through the roof painful....

This surgery was to go back in, but Wider & Deeper trying to get Clear Margins. After the April double surgery I had.
I was First case of the day at 7am. I got there & checked in at 5:20am. (Same as my April double surgery)

But the day before surgery, I myself found 2 new lumps/ tumors, right up front where the new one was removed in April. One was another Floor of mouth hard lump.... The other one was a larger, soft lump underside of Flap, close to where the surgeon needed to excise again ( to find Clear Margin from April surgery). So, that early morning I showed him, right before they put me under. He felt them with his fingers. ( he has been my doctor for the past 26+ years! We are very bonded, close. I cook for him!)

General anesthesia, Endotracheal intubation, ventilator, etc . 2+ hour surgery. I was
The junior surgeon who came to my room, that evening ( he also has been on my cancer team for the past 2 years)-- He said in Floor of mouth--- "Crystal, we cut out everything we saw. Which was a Lot"
They pretty much Gutted the floor of mouth, all the way across front.
Tongue Flap-- the Holes they had to cut in my flap were so large, that they could not leave them open. So they sutured the Flap down, to my bottom lip. Only way, he said, to cover those large holes.

I have Layers of sutures. Floor of mouth, is bottom layer then tongue Flap stitched down over that, to lip.
( Keep in mind, my lower left lip was Gutted Out Twice in 2017, from invasive SCC tumor w/ deep positive margins that spread from my tongue ( through PNI ??). He Never found clear margins there, thus I had Radiation)

The result right now, of my Flap sutured to my bottom lip??? A very tight, swollen, strained, red streaked, very very Painful Bottom Lip -- swollen chin, under jaws, down into my neck....

On clear liquid diet, antibiotics until May 29th when I see my Primary surgeon in Post Op clinic visit.

No idea what this tongue flap will be like, when released from sutures.

Also, I've no idea what's next for me treatment wise...

2 places Enhanced on the CT scan , in my Flap, before this surgery. One was totally expected, where that tumor had invaded/ grown into the flap.
The other place that enhanced really caught my attention-- a place on the 1/4 natural tongue I have left that's been irritated & painful a long time. That place enhanced..... I finally, after many months of ignoring it-- told my surgeon.
So he biopsied it. ( he said it doesn't look suspicious though. I hope it's just something benign!!)

Monday I'm supposed to get Scoped by my Voice & Swallowing disorders Head & Neck doctor ( my second Head& Neck doctor)-- to look at the moderate dysplasia mass beside my vocal cords, that he zapped with Laser surgery in April double surgery. No I don't feel like getting scoped, but if he thinks it's safe right now, with all I've going on-- I will do it. Anyway, he can check me out.

In pain, so getting to bed soon.
Thank you So Very Much for all the well wishing & encouragement!!! You really don't know how much it means to me!! It's tremendous. To hear from others who actually Know what this road is like-- it is just so important!!!

Today I finished a pretty stitched table topper, that I am mailing to a 50 year old lady who has Multiple Myeloma. She's on 3 chemotherapy treatments and None of them are working.
They've given her only 6 more months to live.
So, I've been focused on Her for a couple days, finishing her project , as I slog through my own pain.

Hoping my tongue Flap can be saved...

Crystal

By the way, I don't know if this is my 5th & 6 th recurrence, or if it's a new Primary.
Either way, my SCC found a way to adapt to my Radiation treatments, of 1 year ago......It evolved, was resistant to the radiation, and kept on growing.

I did volunteer for more Radiation to this area. I don't know if that's the answer, or Erbitux, or what....

Foundation One-- my medical oncologist sent one of my frozen tumors to Foundation One, in early 2018. It was a Base of Tongue recurrence. Ulcerated, Invasive, with positive margins.

The tumor had O matches, for any presently known targeted drugs. None, zip, nada. It had no matching characteristics / mutations to any targeted treatments.

In fact, my tumors profile described it as being an aggressive tumor, with a pattern of Recurrence. It showed a poor prognosis.

It's living up to its genomic findings, I guess.

I just have to depend on my excellent Team, their collective experience, and the fact that a couple of them have known me/ treated me at this wonderful CCC, for 26+ years, long before I was a cancer patient.

Please remember, my genetic immune deficiency comes into play big time, when choosing treatments for me. It's very complicated...

Tired, rambling on too much, sorry!
Crystal

Oh gosh Crystal!

You have so much on your plate that it's hard to figure out where to begin. I do think it's so amazing that your making that thing for the other woman who has cancer. That is so kind of you to spend your time doing for another! I have always wished I had a talent for making things but I'm just over here admiring every one else's talents haha!!

I am so hoping that they feel confident that they got it all when your biopsies come back. And yes I hope your tongue use is good once they remove your suture that is holding it to your lip. I'm having a hard time picturing what your poor mouth has been through.

Thank you for giving the update. I've been thinking of you and checking in here to see how you're doing. It's nice to know that even though all you've been through you are still managing to have a positive attitude which is more than I can say about myself even. I definitely do get in funks from time to time from being annoyed to have been afflicted with cancer and this aftermath we have left over from getting treatment.

I hate to hear that right now there's no clinical trials that seem would fit for you. Don't focus on that part please and leave that up to your medical team to figure out.

I wish you lived nearby, I would love to give you a hug so I'm sending you one here (((((hugs)))))!

I hope you've been at least able to enjoy some of the beautiful spring weather. This Spring weather I think has helped lift my mood. Something about sitting in the sun feeling a breeze and listening to the birds that just makes your tired soul feel at peace. At least for me. But then again, lounging on my big soft sectional with a good show on the DVR brings me a lot of peace too haha! Do you have any favorite shows you like to watch? I'm a reality tv junkie. I love shows like 90 Day Fiance, My 600 lb Life, Naked and Afraid, Married at First Sight, to name a few.

Laura

Hi Laura,

Even though I cannot eat ( and I haven't had any solid food since March 2017)-- some of my favorite tv shows are Baking and cooking shows. I still Bake & cook for others. Everyone loves my food ( I used to Compete all the time, and win a lot! Interviewed by Food Editor, in the mewspaper, etc)

Today my second Head & Neck surgeon ( Voice & Swallowing disorders)-- he Scoped me to look at the mass beside vocal cords, post Laser surgery. And damn, the lesion is still there.
So, more Laser surgery on July 15th, or sooner-- he said if my Primary surgeon takes me back to OR before then to let him know and they will double team me again.

(Sometimes I get the feeling something else is gonna kill me, before my cancer does. Like anesthesia or pneumonia. I guess it's a toss up, what's gonna take me out first)

On the video today, we also saw that I am actively aspirating my Saliva & secretions .
Yes, he showed me.... Even not drinking anything for 2 hours prior, I am still aspirating my secretions into my airway. Really bad.

He looked at my poor Swollen face....And told me I'm Symmetrical! Swollen equally on both sides. Looked in my mouth. It's like a war zone in there ,.... He also showed me that the Thrush inside my mouth, has spread down my throat...
Well, go figure-- I'm now on my 4th course of antibiotics, since end of March ( 3 courses for my aspiration pneumonia. And now on them, post surgery)

Medical Oncology-- he wants me in to see my MO , ASAP. My case went back to Tumor Board end of last week.... So, they are already talking... I volunteered to my surgeon that I'm willing to do more radiation. If they will let me.

I'm in too much pain and need to get to bed. Pain is firing all over my head. Sharp and deep.

Adios.
P.S. Multiple pathology reports are Pending. Not finalized yet. So, I'm waiting on those too.
Crystal