Hello all,

I was referred here by a cyber H&N cancer friend. He recommended it as a straight shooting, no sugar coating forum. I probably could use a good dose of reality as I've been caught flat footed a couple of times since my Dx.

A little history.. not much different than most I assume. Had a cold/sinus infection August 2012 with swollen lymph nodes on the left side of my neck. Nothing unusual for me. By September the infection hadn't waned and I developed a prostate infection as well. A trip to my primary care physician and a round of antibiotics later everything was clearing up and while the lymph node in my neck went down, it didn't go away. Into October and surprise! A heart attack (my 2nd ...triple bypass on 2007) on the 15th. Three stents and a week later I'm home doing fine. Follow up with my PCP the 25th of Oct. and all is well except the swollen lymph node. Another round of antibiotics and no change. CAT scan in early November...visit to the ENT on the 21st and a FNA. Diagnosis SCC H&N on the 30th of November.

Surgery to remove palatine tonsils on Dec. 12th with biopsies and laryngoscopy. No primary found. Dx Tx N2b MO Stage IV HPV+

2nd opinion Jan. 18th at Johns Hopkins. Decided on seeking treatment there as opposed to locally (bad experience locally).
Surgery on Feb 7th. Selective neck dissection to remove the cancerous lymph nodes along with 24 additional lymph nodes on the left side of my neck, TORS to remove lingual tonsils and do additional biopsies to determine primary and another laryngoscopy. Still no primary found.

11 days after surgery I had a situation as one of the tonsil beds blew a clot and I began bleeding. Enough so that a trip to the ER and then an ambulance ride to Johns Hopkins for emergency surgery was warranted. I lost a pint a blood. Fortunately is was considered a slow leak and I'm Ok.

Treatment starts Thursday the 14th. 35 rad treatments and 7 weekly chemo (Cisplatin) sessions.

So there you have it. What else can I say? Just want to come out of this in one piece and get back to whatever will be considered normal. I have the feeling the new normal will be drastically different.

"T"

Welcome aboard, Mr "T".

You will find a small but very knowledgeable group of HNC survivors here, some nice and polite, some nasty dogs that growl a lot and sometime nip and bite but all because they are quite passionate about the various thoughts on this rather opaque disease, oral cancer.

If you look at nearly all posters, you see a very annotated history of key events. This can be set in your profile and shows whenever you post, making it really easy for others to see you profile.

Welocme again

Hi Mark. Welcome to the family. You have been through so much - wow. You must feel like a pincushion or that guy everyone does surgery on in the game "Operation".

How Wierd that they have not yet found a primary. Regardless your treatment plan is pretty standard after surgery. The chemotherapy is, I hear, easier to tolerate when given in weekly doses. You can do this. You sound savy with regard to your medical system. When do you start chemo/radiation?

What questions do you have about your forthcoming treatment? There are many knowledgeable people here who can help. - feel free to discuss emotions as well as procedures. We are all complete humans - not the sum of our treatments!

Hugs
Donna

Hi Donna,

Thank you for the welcome. It is weird they didn't find the primary. It accounts for only 1-2% of head and neck cancers. They did plenty of biopsies too! My team seems to think my body eradicated the primary on it's own.

I start IMRT treatment Thursday the 14th and my first chemo infusion is Monday the 18th. The procedures I'm pretty squared away with. My mask is made and I'll be going through the simulation on Wednesday the 13th. I meet with my MO on Friday the 15th and I'll get the low down on the chemo. I already know I'll be in the chair for 4-6 hours.

As far as emotions? Too many to write down. It's been a roller coaster to say the least. I'm about as ready as I'm going to be and I'm going in eyes wide open.

I see you've been through quite a bit and you're a long time survivor It's always encouraging to see that. Thank you again for the welcome.

"T"

Welcome, T

Sorry to hear about your diagnosis, and past medical history. I don't know where I fit in Donfoo's description, maybe the nice one lol? Sometimes a primary is not found, better if it is, but 90 percent are in the Oropharynx, mainly palintine, lingual tonsil, BOT, and reason the tonsil was removed during biopsy, as you probably know, and that area will be treated as the primary. The heard of disappearing primary tumors, which is uncommon, maybe from the body fighing it off, and when it metastasizes to the Lymph nodes, the primary may disappear or just to small to be found.

There's a lot to know, if you care to, some don't. OCF has many pages of info, blogger's various posts with thier experiences, where you can thumb through too.

I see your N staging to be N2b, so there are two or more lymph nodes involved in the ipsilateral neck. I assume the one removed is in level II, most are for oropharynx, but wondering where the other was? Doesn't matter for treatment, they will hit the area anyway, but may direct more gy to that area.

The treatment you are getting is considered the gold standard for SCCHN. IDK if you are going to be treated at John Hopkins or going back home with thier treatment plan, and having it there, but you'll need a multiple sty team of doctors, clinicians for your care. I've been to Winchester, VA, a number of times to visit in-laws, but was never treated there, nice place, but John Hopkins is one of the best you can go to.

Good luck with everything, and if you have any questions, just post.

Hey Mark

I prefer the term "old frack" to nasty dog, but what can you do with youngsters like Donfoo. (George Carlin used to say he was not an "old fart" but an 'old f***" which term you cannot use on OCF, so I went with the Battlestar Galatica version of "frack")

If you do not already have a TSH blood test showing the exact number of your TSH hormone, get one now before radiation. I am shocked by how many doctors do not insist on this, but most went to medical school in the 20 century with little focus on endocrinology. After all the TX, you want the TSH level to be the same as it was before. Without knowing your pre radiation level, you are stuck with a guessing game since the "normal" lab standards run from 0.3 to 5.0, a gap that is meaningless to an individual. Before radiation, back in August 2007, my TSH levels were 1.68. They shot up almost 300% after IMRT to 4.3 and remained high after CyberKnife at 4.2. But all perfectly "normal" according to the lab ranges. I found an endocrinologist who went to medical school in the 21st century who knew it should be no higher than 3 who put me on a pill and now I am back to 1.6. Otherwise you will suffer uneccesarily from fatigue and cold until your TSH is back where it should be.
It's a tough road coming up ahead, but you can do it
Charm

Hi Paul,

Actually, DonFoo recommended this site to me I know him from the CSN site. I've done quite a bit of browsing and reading here and there's a lot of great info and posts. As far as the disappearing primary, it kind of fits my MO. If there's a small percentage it will happen, it probably will happen to me ~lol~ 1-2% Unknown primary...1% chance of post operative bleeding 11 days out... yep that's me! I'm hoping it's a trend that has run it's course.

Yes, I had two lymph nodes on the same side of my neck removed with 24 additional lymph nodes. Both tumors were 5+cm. You're correct in the location of the first tumor. The second was in the posterior triangle area just below my ear. Prior to the surgery, the tumors were clearly visible and were beginning to cause discomfort. They were "aggressive" according to my surgeon and had intertwined themselves in the muscles, nerves and blood vessels in my neck. It was delicate and complicated surgery and I'm still feeling the effects of the nerve trauma/damage.

I'll be staying in Baltimore and getting treatment at JH. Lodging has been taken care of by the Cancer Society's Hope Lodge. I started in Winchester but didn't have the greatest experience with the doctors there. Johns Hopkins is #1 in the country for H&N cancer and I have full confidence in my team. The entire organization has been amazing through everything thus far.

Thanks for the reply! I appreciate it!

"T"

Good info Charm!

I've read about thyroid issues due to rads. We'll be doing the dry run simulation Wednesday the 13th and I'll ask my RO about that for sure!

Donfoo is a good guy. We started this journey at about the same time. I've been following his blog. He's done incredibly well so far.

Thanks for the reply and time will tell if you're an "old frack" or not ~lol~

"T"

That's where I know your tag name FB, and CSN, which I sometimes browse. I stayed at Hope Lodge NYC for almost two months. which was an awesome place in the heart of Manhattan, so hope your expierience is the same. I did not participate in the many offerings like the different type massages, healthy cooking classes, etc. but met many people from all over during my stay. Hopefully you have a caretaker with you, most do, but was difficult doing it alone, going to treatment, having to shop, cook, clean for yourself, but they did have housekeeping service once a week, a laundry room, and all the amenities you may need. I had the same involved lymph node near the ear, level II, which was painfull, so needed the fentanyl patch to control the pain, and later on the same twisted nerves, veins, muscle, and needed a RND, which turned out to be best due to cancer being found in the neck muscle. All thes best.

Just want to add my welcome and say that you've come to the right place to get the full range of experiences with hn cancer. Best of luck as you fight.

Hi Paul,

Yes, I have a caretaker. It's required in order to stay at Hope Lodge. She's my partner in life and I'm very blessed. Her positive attitude and fighting spirit is a huge benefit. She's also very pro-active concerning ways to help me...massage, cooking etc. (she's a marvelous cook and I'm going to mourn the loss of my taste buds for sure!).

The nerve pain from the surgery is still my biggest challenge. My left shoulder is still very weak and painful despite PT I'm doing at home 3X a day or more (arm raises and shoulder shrugs). You can see a big difference in my traps when I do a shoulder shrug. It's as if the nerves controlling it are gone. My RO prescribe Neurontin and it's has helped a bit but the incision area and beyond is still very sensitive and painful. Fortunately, my swallowing has improved and I've been able to eat solid foods the past week. I still have to wash things down but it's much better than it was.

If there's anything anyone can share concerning nerve pain issues I would appreciate hearing about them.

"T"

Hello, T, and welcome!
If you're a friend of Donfoo's then you're a friend of mine! ;-)
Wow-getting treated @ JH's! Holy cow! That's great you've got a good partner with you as I suspect she'll help out in a million and one ways that don't even appear necessary now.
As for the nerve pain, I've had on/off, sometimes severe pain in my bottom lip/side of face where the surgeon did my "frankenface" (lip resection) surgery. I seem to have electric shock-type pains where he joined areas together. I take gabapentin, and yes, it helps-a bit. I didn't think it was doing any good a while back and stopped taking it-YIKES!What a mistake! I know what you're going through and there might be something better for nerve pain but this but it does seem to help ease the intensity/duration of the shocks.
Hang in there, buddy-you're gonna come through all this with flying colors!
Gordon

Just for others to know, you can stay alone at Hope Lodge, but need a letter from your doctor or qualified health practioner saying you are able to care for yourself. I use neurontin, gabapentin, then lyrica, pregabalin, but more for the neuropathy in the legs, feet, which with some, is not helpful. Some vitamins may help, at least for neuropathy. Also acupuncture, acupressure, mayofacial massage, electrical stimulation, cold compress, avoiding any activities than cause episodic pain or triggers, but check with your doctors. and it's still eatly in the recovery phase. The hospital should have pain or palliative care management that can help. Glad you have a caretaker.

The pain near the ear should lessen, resolve, when the tumor shrinks from radiation, and chemo.

Mark, welcome to OCF! Glad you have found this site to help you with up to date correct medical info and support.

Im from The Allentown area, so Im not that far from where you are located.

You did a very smart thing by heading to a major cancer center. Best wishes with your upcoming treatments!

Hi GPK,

Ahhh... Johns Hopkins... what can I say? It's a two hour drive for me and worth every minute. After what I went through locally, it's a God send. Locally, it seemed as if the Dr's could care less and one hand didn't know what the other was doing. Both Marcia (my partner) and I felt the same thing and didn't feel confident in them. I called Johns Hopkins and was guided through the process by a wonderful lady named Salihah that got me all the forms I needed to fill out and was there for me with any questions. After that I was contacted by the head of the Sidney Kimmel Cancer Center and my appointment was made. They acquired all the pathology slides and test results that I couldn't provide. When I arrived. it was like a well oiled machine. Within minutes of being placed in an exam room a "Team" walked in. An ENT/Surgical Oncologist, a RO, a MO, a speech/language pathologist, an oncology nurse practitioner/manager and the head of the center. Everyone there was knowledgeable of my case history and as up on everything. I was poked, prodded and examined more in 25 minutes than I was the entire time at Winchester. Needless to say it was a no brainer. Since then, with two surgeries and overnight stays, they have been nothing less than stellar in their care. I even got a thank you/get well card from the staff that cared for me during my visits... personally signed no less! Before my first surgery, the young lady (Salihah) who guided me in the beginning, called just to wish me well

What you call "electric shock" type pain I call "ice pick" pain. It's like a sharp, very painful stabbing feeling in my neck where the incision was made and adjacent areas including my scalp, ear, and left collarbone area (where the tube came out of my neck) and shoulder. So you have that along with the general constant pain. I'll speak more with my Dr's this week about it.

Paul B...

I plan on speaking with my team about several concerns. I'm just turning the corner from the surgeries and I'm starting treatment. It's like I'm finally putting one fire out and I'm being sent off to fight another one while the first one is still smoldering.

Regardless... the time is here and now and I have to step up to the plate and at the very least get on base.

"T"

Welcome Fishmanpa! We also chose to drive nearly 2 hours each way to treatment to get to the right hospital, The University of Chicago. Our local hospital swore to us that they were the best at head and neck cancer in Lake County, but seeing as they were about to radiate my husband's head, sounded like a prudent idea to expand our search beyond the county we live in. The drive was a pain in the backside, but we cannot argue with the results...it was well worth the extra effort.

Sounds like you have made a great decision on your treatment team and are in very capable hands. Wishing you the best of luck as you head into the thick of treatment, we are all here for you, Ana

P.S. Charm, I am so very glad you explained that...I had no idea what a "frack" was!

Thanks for the welcome Christine!

I feel much more confident and relaxed knowing I'm getting the best possible care.

I know Allentown. I'm originally from the Philly/S Jersey area and I've been through there quite a few times in my lifetime

"T"

Hi Ana,

Thank you for the welcome! Fortunately, we'll be staying in Baltimore during the week. The Cancer Society has lodging and being we're traveling over 100 miles, we get to stay there free of charge and it's only a couple of blocks from the hospital

I'm looking forward to getting started and done!

"T"

Hi Mark,

Welcome to OCF - sorry you have to be here, but it is the best place for support and information.

I've had 4 surgeries for OC and the last 2 were at Johns Hopkins. Based on my experiences it is the best place for treatment with outstanding doctors and great support staff (who gets the challenges an OC patient faces after surgery).

It is about a 3 hour drive for me and well worth it. I hope your treatment goes smoothly and your healing goes quickly. I wish you the best!