Hi,
As you can see by my signature we are new to this journey. I am very scared but trying to stay positive for my husband and kids - we have a 13 yo daughter and 12 yo son. Have bought some books but this forum has already been priceless in the information I've found and the questions I've already learned to ask. Thank you all so much for this forum!

Hubby woke up to a large, painless lump in L neck on the 5th of Dec - when two rounds of antibiotics did nothing our GP (who has been wonderful) referred him to an ENT with CT scan. ENT had a PET done Xmas Eve morning. Pet shows clear below the neck - spot on left BOT with very small mets to R neck and large area on L neck. L ND done 7 Jan - 31 nodes examined, 5 with mets, largest mets 6.4cm. Positive for extracapsular invasion (invasion of skeletal muscle and soft tissue). Positive for blood vessel invasion. They had planned to do Bilateral ND, but spent 7 hours getting everything they could on the L side. Removed the sternocloidalmastoid muscle & jugular vein, but there is infiltration in the wall of the carotid artery.

I see on here many talk about the need for a second opinion, but we were referred immediately to Siteman Cancer Center and we have so far been very comfortable with what they have said and done. RO is a bit short but we don't have to like her - just trust her and I do. Any opinions on this are welcome.

We meet with the MO on Tuesday so any info or questions I welcome - I see some have had IC before starting concurrent but so far that is not the plan as I know it. He gets fitted with the mask/simulation on 25 Jan.

Seeing a dentist tomorrow to make sure dental issues are all taken care of. He goes into hosital on Thurs for g-tube placement. As a nurse I am fairly comfortable with taking care of it and teaching him about it - and am prepared to sit on him and pour nutrition/fluids down him if needed. His pet name for me is Nurse Ratched - hence my username.

Thanks to this forum, we've already been back to the GP, gotten him on a low dose antidepressant, got a script for xanax, and she said all we need to do is call her if we need anything else to avoid another appointment and co-pay.

Any advise or extra information anyone can give I appreciate!

Thanks,
Shelly

Shelly,

I agree with you on the RO. You don't have to like them, just trust they are the best professional for you. My RO is great and very personable, my ENT not so much. I do feel my ENT is good at his job and has given me great care but he's not a warm and fuzzy type of guy. OK with me though, this is not about making friends.

Good thing your a nurse. It will give you a leg up when dealing with the medical system.

Kelly

Hi, Shelly,

I am so sorry that you and your family will be making this very tough journey. While there are a lot of different opinions on a variety of concerns on this website, the one thing that matters is that you and Mike are comfortable with the Cancer Center, doctors and caregivers. While oral cancers can be similar, no two people are alike and the plan of care can vary.

As a nurse, I think you have an upper hand. Take advantage of it. Mike's in great hands.

For me, the stuff that is hard to predict is the emotional fallout. This group has been a real lifeline for me. No real advice here just wanted to welcome you to our group.

Hang in there!
Anita

Shelly

Loved One Flew over the Cuckoo's Nest, both the book and the 1975 movie. Your husband better be careful about a self fulfilling prophecy:
[quote]
Nurse Ratched: If Mr. McMurphy doesn't want to take his medication orally, I'm sure we can arrange that he can have it some other way. But I don't think that he would like it.
[McMurphy turns around to see Harding smiling at him]
McMurphy: Heh, YOU'D like it, wouldn't you?
[to Harding, regarding the pills]
McMurphy: Here, give it to me.[/quote]
You are way ahead of most new posters here but I would be remiss if I warn you about a medical Catch22 - no preTX thyroid level test, no TX once the radiation fries the thyroid. Here's my spiel
[quote]Insist on a TSH level blood test for thyroid so you have a pre-TX baseline on what is normal. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth.
I hope you never need the results of this pre TX test
Disclaimer: I have a degree of Doctor of Law, NOT Medicine[/quote]
Keep the Faith
Charm

I will have to rent the movie and let my dh watch it so he can get a reminder of those "alternate" medication routes. Gotta keep our sense of humor somehow.
Thanks to your spiels on here in other posts, I have already obtained a copy of his blood work done by our GP in early Dec and confirmed TSH was done.

You are truly an inspiration and wealth of knowledge.
Bless you,
Shelly

Good luck Shelly. We will be here 24/7 to help you anyway we can.

I too found mine as a painless lump in my neck and I was also BOT primary and one of my first cancer docs (I saw 5) also tried antibiotics before being Dx'ed for cancer but his nodal involvement was far greater than mine.

Calories and hydration are extremely important throughout his Tx and his recovery but also keep him swallowing every day to hopefully avoid post Tx swallowing issues.

Hi Shelly, Sorry you have to be here but WELCOME. My husband's cancer presented almost identical to your husbands'. My husband woke up the week before Christmas last year (2008) with a non-painful lump in his left neck (4 cm malignant lymph node) and no other symptoms at all. His primary was also the base of tongue. We are almost a year ahead of you and your husband on this long........road. Treatment is tough and brutal but doable. My husband is doing really well and life is good. You have found a great place for support and information from a lot of patients and caregivers who have traveled similar paths. Your husband is lucky to have his #1 caregiver also be a nurse. Best wishes.

Welcome Shelly from another Shelley! Sorry you have to be here but you have found the best place for encouragement and support. As the others have said, the treatment can be pretty brutal, but Mike can do it. He has to, there is no other option. Please keep us posted....we all care.

Shelley

Welcome, Shelly, although under these circumstances. I am at about the same place as your husband. Had the lump in my neck removed and primary was found through subsequent surgery to be in my right tonsil. I went to the dentist today for thorough exam - will need to go back tomorrow for a cleaning and the extraction of a molar. Will meet with the RO on Wed to schedule concurrent rad (35X) and chemo (3X cisplatin). PEG surgery is set for 1/29.

It is so fortunate for Mike that you are a nurse. You seem pretty versed in all the 'lingo' - I was dx'd on 12/15 and had no idea of all of the terminology. I love your sense of humor in the face of this terrible situation you find yourself in. I don't have any advice, being a new cancer patient myself, just wanted to welcome you.

Chris

BTW - CHARM, I wrote a note to ask the RO on Weds about the baseline THC - thanks so much!

welcome shelly! that is one of the things i love about this site is that someone is always available 24/7!
u will travel a long, tough road as caregiver but there is a light at the end of the tunnel. best of luck!

Hi Shelly,

I'm new here too. It seems like our hubbies are on similar paths. What I am wondering is how you are able to get so many appointments so quickly. It sounds like you really have a plan in place and have already met the RO. We have only seen a surgeon and don't know if we should just start looking for an oncologist on our own or what. I wish we had more guidance. My hubby's ND was 1/8/10, but he had a tonsillectomy as well and is still in some pain.

Do you have any advice on how I should proceed at this point?

Thanks, and I hope all goes well for your hubby in this next phase of treatment.

Laurie

[quote]We have only seen a surgeon and don't know if we should just start looking for an oncologist on our own or what. I wish we had more guidance.[/quote]
Laurie --

This is why you will see so many recommendations here to get an opinion (or two, or more) from a comprehensive cancer center, or CCC. At such a facility your husband's case will be evaluated by a "tumor board" of medical professionals from a variety of specialties. They will discuss his case and come up with a treatment plan. Many CCCs have specialized head and neck cancer clinics -- and because these cancers can affect so many vital functions, it is critical to have a team of professionals who are familiar with this disease working together for the best outcome.

[quote]What I am wondering is how you are able to get so many appointments so quickly. [/quote]
In her first post on this thread Shelly said her husband was being treated at Siteman Cancer Center in St. Louis, which is a CCC. This is an example of the coordination you will find at such a facility.

To learn more about CCCs, you can start here -- though be advised that this list has not been updated for a while. (The current list is here.) Another source of information is the National Comprehensive Cancer Network, an alliance of about 20 of the country's leading cancer centers. It's this group that devises the annual treatment protocols used by hospitals across the country.

[Edited to add:] From your posts in another thread, I gather that your husband's surgery was at the University of Washington, which is part of the Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, a NCI-designated CCC and a member of the NCCN. All the support systems of a CCC should be available there, so ask your surgeon's office what your next step should be -- or, more proactively, ask when your husband's case will go before the tumor board. Sometimes you just have to be the squeaky wheel.

I wish you and your husband all the best.

And Shelly, who started this thread, the same to you and your husband.

Leslie thank you for the updated list, I have asked Chester to update the website this week.

Laurie - As a newby to this journey, can add only one piece of advice, and I would reiterate what Leslie said - be the squeaky wheel.
Advise: Ask the ENT/surgeon's office - if he has a good nurse, use her. As you meet with the different doctors, find that "good nurse". A good nurse is worth her weight in gold - full of information, helpful, knows the system, knows who to ask if she doesn't know the answer (and will admit when she doesn't know), and is willing to put extra effort in finding the answers.

Siteman is located adjacent to the hospital my husband was in after his ND. Our ENT referred us to the RO, who was either doing rounds at the hospital or stopped in to see him for a few minutes after the surgery. She was there only a few minutes, during which her nurse gave me phone numbers to call (the nurses) if we had any questions and told me to contact them the following Monday to set up an appointment. When I called, the other nurse scheduled Mike for a simulation/mask fitting for Feb 5th. After I read this board some more, I called her back and insisted on an appointment to discuss my husband's treatment. She tried to schedule us a little extra time on the 5th and I told her that would not work, because we only knew that he was having radiation but had too many questions to wait that long. (I wasn't rude or snotty - although I am quite capable of that if needed - I think the slight edge of hysteria in my voice convinced her.) She "squeezed" us in last week. (This same nurse told me Mike would not get a PEG because they don't like to place them until needed, but the RO said she wanted one in "just in case". At this point, this nurse does not fall into the "good" nurse column in my opinion, but I'll hold judgment for a while before I place her in the "bad" nurse column.) When we saw the RO, she gave us basic info, had her nurse get us an appointment for the MO, schedule the PEG, and moved the simulation up to the 25th.

So basically if I hadn't followed the squeaky wheel advise here, we'd be waiting until the 5th.

Looks like we are on a similar path - I hope everything goes well with your husband's treatment. I am thinking and praying for you and am here if you need me.

This board is a blessing - THANK YOU to everyone who has welcomed me and for all you have posted in the past. You all give me hope.

Shelly

LaurieGH,

My hubby had the same cancer just 1 year ago...hang in there! At times you think it will never turn out well (and OMG!) but, at this point, I can say, there are no residual effects that cannot be dealt with. He is doing sooo well, eats just about everything, has no pain, feels great, and looks great! Pain meds helped him get through the worst of it, and if he is having chemo and rads, Zofran was the best for his nausea...they increased the dosage when he needed it near the end of his treatments.

My best wishes to both of you!!!

So we met with the MO on Tuesday and she changed the treatment plan. Instead of starting CRT in the next two weeks, Mike is getting a port put in on Wed with IC TPF starting on Thursday. He will get this every 3 weeks X2, then get a peg placed with his mask/simulation on Feb 23rd and CRT to start soon after.
One of the things the MO said was that she could do cisplatin every 3 weeks during RAD, or she could do it weekly. She said they have no evidence that either way works better but that by getting weekly chemo instead of bigger doses every 3 weeks it might minimize the side effects. Seems to me that the weekly would make him somewhat nauseous and tired every week (all the time?) vs being very nauseous and tired with a break in between.
Any thoughts or opinions on this? Should I start a new thread somewhere else with this question?

Thanks,
Shelly

Hi Shelly,

While I have definitely no scientific poll on the weekly vs tri-weekly chemo it seems to me that the people on this board who received it weekly faired better. For the most part (and there are exceptions) the symptoms from either chemo or radiation don't really get bad until about week three anyway.

Personally, Bill did not even notice his first and second chemos. Nausea was not an issue...I assume because the anti-nausea drugs and hydration provided during the infusion was so good. Who knows what to blame once the cascade of symptoms starts around week three....pain, for Bill, was his worst enemy and of all crazy things...hiccups after the chemo which required thorazine to stop.

Every one reacts differently but the trend that I have noticed here is that patients seem to tolerate the weekly better.

JMHO, Deb

I had the every 3 week Cisplatin regimen and the last 2 were very tough on me. Everyone back then got the standard 3 doses. Within the last year or so the weekly bags started showing up and as Deb said they seem to fare better in the side effect area. There is no conclusive evidence that I know of that points to one vs the other but Moffitt still uses the every 3 week approach.

Shelly:

I had a similiar diag. I like David had the every 3 week approach. Compared to many I had an easy time however last few weeks were tough although most of the issues I had were from Rad. I did have a bit of hearing loss. They did do a 3 day "flush" after each chemo treatment, Nausea was not an issue.
I was able to do the 180 mile round trip myself until the last week or so of treatments. 2 yrs out I have almost no issues, feel great so your husband can beat this thing.

Hi Shelly and welcome to OCF. Your first post had me laughing when you said you would sit on your hubby to get him to drink and get nutrition..lol I love you see a good sense of humor because you need one. You sound like an awesome caregiver...taking charge and getting things done. That is a huge help to us patients. I have not had radiation or chemo so I can't comment on that. However, I'm happy to see you took the step for anxiety/depression meds. I didn't take that step until I had a panic attack in the board room with all higher ups at work. Opps!! It helped me a lot.

I wish you and your husband much luck in your journey. And I am here to listen to you vent or anything else I can do.

shelly,
my hubby went thru 3 rounds of chemo...5 days a week X 24 hours a day, then would have 2 weeks off. now he is doing radiation X 5/once a week chemo.

in his experience...the once a week is much more tolerable. he would do the chemo 1 week (5 days) but it would take him a week to recover, and by the time he started feeling better, it was time to do it all over again.

at this point he has alot of side effects but it is mainly due to the radiation. i can not imagine him doing a week of radiation and chemo concurrently.

but everyone is different.