Dear friends,

I am meeting with my MO & RO team at Mass General tomorrow. I'm wondering if any of you that have gone through a recurrence and/or chemo/rads for oropharyngeal cancer have any suggested questions I should ask during the session. My mind is like scrambled eggs right now. I always right things down in "cancer notebook". I know I have to sit down tonight and sort out my questions, but I would greatly appreciate your input.

Thanks so much,
Kerri

Kerri, I am so very sorry to hear about your recurrence!!!! It is not easy to grasp the thought of being sick again. I hope you are doing ok with your recovery! Rest and know we are all in your corner!!!!

If it were me I would ask a million questions. Here is a start...

Were the margins clear?
Will I need any other treatment?
While I was under did you look for any other areas where cancer could be hiding?
Should I do radiation?
How long do you think my recovery will be?
What Stage was my cancer?
Were there any nodes involved or suspected?
If nodes were taken, how many and did any have cancer?
If nodes were not taken, why not?
How often will my follow up check be?

Kerri

Ask for a written copy of the pathology report.
Ask if there was any perineural involvement as PNI in an indicator of more aggressive TX and radiation/chemo.
Ask all of Christine's questions.
Good luck
Charm

Kerri, I am so sorry this is happening. Keep in touch. I will keep you and your family in my thoughts and prayers.

I thought of another one. I dont know how common this is but I asked my docs. Ask if it is the same kind of cancer (SCC).

I'm so sorry to hear this Kerri.
We have had an oropharyngeal recurrence but our circumstances are completely different to you.
You did not have radiation the first round so I'm guessing that this will be your treatment modality this time round, together with chemo.
You should ask about the options with chemo. What drug, what frequency, what side effects.
If you are wanting more children you may want to ask about options such as egg freezing prior to chemo. Just a thought.

One day at a time Kerri,
Tammy

Thank you, Tammy. I've compiled some questions for tomorrow. I know more will come up, but I've seen this team before and they are quite excellent.

You bring up a good point about the possibility of having more kids, but we have been fortunate to have 2 wonderful children, ages 3 and 1 year old. I just want to be able to see them grow up and spend a lifetime with my husband, whom I just adore. We have had nearly 6 wonderful years together, I want many more to come!

Definately ask about the HPV factor that will determine if this is a true recurrence or a second cancer. Hugs! I hate this!

Dan and I went to the team meeting yesterday. It was a long day, but I know these doctors are great, as I have seen them a couple of times before with round 1.

The final details of the path report are not ready yet, but it is definitely SCC of the left tonsil. They seem to think that it is a second primary tumour. They said whether or not it's HPV+ is an academic question, because the status would not affect the treatment plan. My MO explained that some clinical trials are using lower doses of treatment when it comes to HPV+ tumours, but she doesn't recommend this as it has not yet been studied enough.

I have a PET/CT on Monday and I'm hoping for good news on that in that it hasn't spread to my lungs. I just don't see how something that has been watched so closely could have spread to my lungs. As I understand it, if that is the case, palliative care is all that can be done.

So, the treatment plan is to let my tonsillectomy surgery heal a bit more and begin treatment in a few weeks. In the meantime, I get my radiation mask made and do a simulation. I will also be getting a port, since my veins suck. They will continuously assess my need for a PEG. The team is recommending 35 rad treatments, with chemo once a week using carboplatin and taxol.

Any input from you guys would be much appreciated. I feel confident in the team. I just need a little bit of good luck. I need to see my kids grow up spend a lifetime with my husband, my best friend.

It sounds like you are in good hands, Kerri. I'm so sorry you are facing this beast again You have so many reasons to fight like hell though, and I'm confident you will.

I hope your PET comes out ok! Will be wishing you all the good luck in the world.

Kerri,

Sorry that you will have to undergo the chemo/rad but it is what it is and getting the port is a great idea. I wish that was standard procedure. I didn't get one and man it would have made a huge difference late in the Tx for me. I didn't get a PEG and I'm I glad about that but I did allow them to put in a nasal tube for a couple of weeks post TX and it made a big positive difference.

One question, in your Signature you have 08/06/11 for the new SCC. I assume you mean 2012?

Our advice most of the time when facing the rad sessions is to tell people to EAT EAT EAT but with your recovery that may be difficult.

Also get to see a dentist and get the trays made and start with the fluoride asap. Also have them test your TSH level on your next blood draw and save that result for later just in case your thyroid craps out like some of us.

Good luck all the way around and feel free to ask anything anytime.

Thank you, Amy. I'm also fortunate to have all of my OCF friends in my corner.

Along with the dental trays, have a complete dental exam. If you have any teeth that are questionable, they may need to be removed prior to starting rads.

Believe it or not, you are very fortunate! I know you probably think I must be crazy to see anything fortunate about your situation. What I mean is that you already have found OCF and are a well established member. You also have been around the forum long enough to know what radiation entails. To me, it sounds like you caught your recurrence very early which should mean a very good prognosis. You already know how important a good diet and hydration are in relation to getting thru rads easier. Since you have been here for a while, you understand the terminology.

Hang in there!!!

Hey again! Everyone has covered everything else so I'm going to add one thing... Don't let them tell you lung mets is palliative - that's crap, it depends on involvement (I sincerely hope and doubt that you would have them as they have caught it early and there are others here who've had a secondary primary pop up and they are NED after all of that) anyway there are clinical trials available and there was someone here around Christmas who had had lung meta... 2 locations - one was surgically removed - one responded to a clinical trial drug - and that person was expecting to get an NED after their follow up scan. It was a three year thing for them. So don't accept palliative. take care.

Kerri,

I'm sorry your going through this again. Looks like all the above have covered everything. I hope everything goes smoothly as possible.

When I had my PRT/CT Scan last year at Moffitt I was given the report immediately, no waiting. I hope Mass Gen. does the same to put your mind at ease.

I'll be watching for your updates, my thoughts and prayers are with you. We're all in your corner. Stay positive!

Connie ((Hugs))

Kerri

What David & Cheryl & Christine said. Your goal to watch your children grow up and grow old with your husband is very doable IMO. Hey, even an old guy like me took the recurrence hit and I'm fine. It's scary but it will all work out
Keep the Faith
Charm

Kerri,
I echo those sentiments! You can beat this, and go back to enjoying that family for a long, long time. Believe it.

Best,
Anne

I have my PET/CT tomorrow afternoon. I have never had a PET before, nor have my lungs ever been scanned.

I just need some hope. Hope that everything will work out.

I will keep you all posted as the information become available.

Thanks for all of your love and support.

Love,
Kerri

Be prepared to just sit still for an hour after they put the radioactive glucose in. They wouldn't even let me read a book. That was my only surprise when I went. Then I have also heard you shouldn't hug your pet that day as you have radiation in you. I don't know how critical that is. I have another PET coming up next week.

Hi Kerri, thinking of you tomorrow. Of course you are scared. It's one hell of a scary procedure for what it might tell you . Notice I said might. We all hate these scans for this reason but mostly we worry for nothing.
Truly , don't borrow sorrow from tomorrow. Many positive thoughts for you.
Tammy

Fingers crossed its localized or local- regional is as far as it has gone. (lymph nodes) I know it's terrifying - truly - and after a recurrence hope is a bit shy in coming, but you are very lucky on certain things. 1 - you aren't at the point where you've had treatment and are facing a recurrence, because all options are still open to you. 2) this seems to be caught early, so likely no further involvement. 3) you're young and healthy -something that not every cancer patient has going for them, and finally if this is a second primary - and HPV related - as you've likely heard dozens of times.... It responds very well to chemo and rads.

You will get through this... Hugs and blessings to you!

Thanks, Bloop and Tammy.

As I read your signatures, I realize how much you both have endured. I hope to have a fraction of the strength that you both have. I wish for you the best of outcomes in your upcoming tests.

xoxo,
Kerri

Kerri

You probably know all this but here is a nice summary of Petscans NIH Petscan Medline
The diet restrictions on Petscans are important. Your doctors probably gave you instructions but just in case:
24 hours prior to your appointment:
Refrain from consuming any caffeine, including any decaffeinated products for 24 hours prior to your exam. Note: Decaffeinated products still contain small amounts of caffeine.
12 hours prior to your appointment:
Stay on a low-carbohydrate diet. (
Do NOT engage in any strenuous exercise.
Do NOT chew gum.
Avoid mints.

6 hours prior to your appointment:
Do NOT eat anything.
Drink several glasses of water (2-6).
Take any prescribed medications as usual.
Best wishes
Charm

Foods NOT allowed:

Cereals Breads Pasta Rice Dry beans Gravies Fruit and fruit juices Jams and jellies Sugar and candy Honey
Starchy vegetables (such as: peas, corn, potato Milk (including non-dairy milk) Alcohol Coffee or Tea

When Ron had his PET he drove himself home and they just gave him a card that said he was radioactive in case he had to fly out of an airport. And Bloop...I asked his Oncologist bout scans and they said no more...I WANT THEM! He said why would I put Ron thru that, they aren't painful right? I want to know how the cancer is progressing right? Is that fair to ask of a cancer patient, is that why you go? Sorry to steal your posting Kerri but I read all the postings in here, and I see clinical trials and all these things I really want to ask Ron if he wants to try anything instead of giving up...I wanted the tumor under his chin removed, they said the lung cancer will get him first, I had a horrible dream last night...even Ron said that the tumor under his chin will get him first...I want him to fight and to have surgery...I know this is his choice...but I think he can do it. I don't want him to give up just like Kerri and all the others here who keep fighting! I want him to fight too!

Kerri:

Just another one of your OCF buddies letting you know I'll be thinking and praying for you today when you have your PET/CT scan and results.

julieann

Thank you everyone. I'm sitting here drinking my barium cocktail. Sue, I hope someone finally listens to you and Ron. For crying out loud! Patients KNOW when something is amiss. I knew deep down that my tongue was cancerous way back in the beginning and I knew that this was more than just tonsillitis. I wasn't willing to full believe that. I tried to "look on the bright side", but I kept my gut feelings to myself for the most part.

Kerri,

Thinking about you today I hope every thing turns out in your favor. Keep us posted.


Connie ((Hugs))

Kerri,

Willing good news for you & short term pain for a very long term gain!!

All my very best & most positive thoughts!!

Sally

Ditto... Good luck... And hoping for positive results... Also... You shouldn't have to wait more than 24 hrs for the results. Hugs!

Got a call from my MO and the PET/CT results come back in sections. So far, the pelvis and abdomen are clear. She will call when she knows more. Later, I got a call from Dr. Deschler (surgical oncologist) and he said that my FNA was negative . I told him that I had my scan at MGH yesterday and they didn't have all of the results yet. He said that as far as he could see, the lungs looked clear. So, a little more news...all good. I see Dr. Deschler on Friday.

Great news!!!

Definitely! Yeah!

Great news sweet girl!!! I am hoping and praying that this goes away forever for good!!!!!

XOXOXOX Kate

I should rename this thread "New Primary Tumour". It's not a recurrence. I wish I could say "It's not a tumour!" (like Arnold in "Kindergarten Cop")...ha, ha!

But, seriously, this is a new cancer and still not known if it's HPV+ or not. It's been 2 weeks. I called the cancer center again to see if pathology has a result. I guess it seems like longer than 2 weeks because I know I have this cancer in my body and I'm anxiously awaiting treatment to begin. I have an appointment this coming Monday to have my chemo port placed via interventional radiology. Also, waiting on rad schedule. All of this should happen in the next 1-2 weeks.

In the mean time, my husband and I are going to go away for a night...no kids, no distractions...just us...before the battle begins. We really need this. I just passed my first cancer-free anniversary at the end of March. It seemed like some semblance of normalcy had started to set in, then BAM! F'n cancer!

I'm scared. I have about one melt-down a day, short and effective. Then I try to put the demon in a box and imagine myself kicking it around, taking a baseball bat to it, whatever...I guess I have a lot of anger, too! All normal, I know. It's easier to be angry than sad, but I waver between both.

Regardless, each day I see plenty of reasons to be grateful. I know I have so much more than some people who aren't as fortunate. I have love of my family and friends who will do anything in my power to help me. I live just north of a medical mecca where I am getting top-notch care.

As you may well see, my emotions are all over the place. I'm trying to do the best I can. The other day, I took a long nap and I woke myself up laughing hysterically. I wish I could remember what was so funny! That would be nice!

Hopefully they get the final results back SOON!!!! Did they get all your scan results? You were waiting on your chest too... ? Hopefully all is clear and it's HPV - though you are very young for it to be HPV - I'm just saying it because it responds well. prayers, thoughts, and hugs for you.

Kerri,

you are a badass my friend and I love you for that...well that and we have similar tastes in music, movies, humor etc. You and your family are amazing and you will get through this together, this I know.

With you in spirit my dear friend...keep your chin up.

Eric

Kerri

For you to take the time, and have the empathy to post a second post of support to me, after you have just found out this terrible terrible news, astounds me. A new primary tumor, after the first seemingly good news from the Petscan, must be devastating. Yet, you are still thinking of others.

Letting that "demon" out and then boxing it up and whacking it is a good plan. I hope you and your husband can get the night(s) off together you need and soon. The cancer coming back or a new primary tumor is the worst nightmare any of us have - except when it's not longer a nightmare but reality.

You have the right attitude, a loving family, and good medical care: all independent prognostics of beating this.
I will add you in my prayers and thoughts. It's so unfair that kind, gentle, sensitive people like you get dealt such hard hands in life. Let's just hope we have happy endings like Job did in the Bible. Keep the Faith
Charm

My heart breaks for you, Kerri, that you have to face this again. I am thinking of you and keeping you in my prayers.

Charm, You are an amazing person who has helped countless people after all that you have endured. You deserve more than a break, my friend! xoxo

Thank you, Eric. Yes, we are kindred spirits!

Cheryl, my PET/CT was clear, thank goodness! Still waiting on HPV results. Also, I have a question for you. I know you used to work as a nurse. In all reality, how long do you think it will be before I can return to work as a PT?

Kerri, i was sincerely chocked. And afraid of course, because your case (t1n0m0) was really like mine. OMG!

I just cant understand how can this happen! What where your symptoms? Like a tonsilitis? Can you explain?

I really would love from you and the advancing of your treatment and cure.

Love
Braziliangirl82

Hi, Braziliangirl.

I started in May with my left tonsil becoming very inflamed and enlarged so much that it extended out to my uvula (midline of throat). I went to my PCP who prescribed prednisone and antibiotics, as I also had a left ear infection. That pain was pretty bad and it affected my speech. The medications made the tonsil reduce by about 70%, but then 5 days after I finished the antibiotics, it flared up again. All along, I never had a positive strep test, so they thought the tonsillitis was viral and caused the ear infection secondarily. This is when I went to see my surgical oncologist/ENT. He ordered a CT scan with contrast and it showed that my tonsil was enlarged and appeared to just be inflamed. There was no evidence of a peritonsilar abscess, but he felt the tonsil and it was firm. He thought that the infection was inside the tonsil. He prescribed 2 more weeks of antibiotics, which were ineffective at eliminating the problem. So, he decided that that tonsils should be removed. He did NOT expect cancer. It would have had to be a totally different kind of cancer than I had before. He just thought that it was a case of an adult needing a tonsillectomy, which happens. So, when he got into the operating room, he was quite surprised that he found something suspicious looking in my left tonsil. He immediately sent it to pathology, then came the bad news.

So, he thinks that I actually had an infection superimposed over the cancer. So, really, having this case of tonsillitis caused me to find this tumour sooner rather than later. I have to see some bright side of this...lol!

Kerri - my treatment... Well I was blessed im not sure why but in comparison to others it wasn't fun - but I got through it ok... Some do really well with treatment, some struggle a lot - most fall in the middle. Personally - I think i was very fortunate - i had a peg.. Couldn't use it (made me throw up) so I sucked it up and drank my meals towards the end of treatment. Because of this I had my peg removed 2 weeks post treatment (on my birthday!) and was feeling okay about 6 weeks out, in fact I asked work if they needed a hand closing up. Three weeks out I was feeling better... But the two weeks after radiation. We're the worst by far. I no longer work as a nurse... I work for the school board. So I was actually off until September (but was fine to go back to work probably 2 mos out). PT is a heavier job though I would look at 4 mos. minimum depending on how you do with treatment. Good luck... You'll kick it in the butt. Diet makes a big difference in healing. Avoid filling up on junky calories. High calorie healthful foods will serve you well. Hugs!

Thanks for sharing, Cheryl! What kind of nursing did you do? I can't see myself being a PT until retirement age. It's tough on the body, especially my hands and wrists. I do a lot of manual work and have tiny hands!

Ironically, I am scheduled to take a course in mid-September on Advanced Oncology Rehab. A good portion of it focuses on H & N cancer. I thought about asking for a refund, but I will only be a couple of weeks into treatment, so I figured I could handle it. Plus, they'll have a real, live patient to use as a subject...lucky for them! Lol!

Kerri, just talked about you with a really close friend that�s a doctor (pneumologist) that had breast cancer last year.

As you she said "the brighter side" - something like this: "Well, it�s better to have a secondary primmary than a recurrence. She will get well".

I was happier. Hope you also do.

Kerri, your little one is just 5 or 6 months younger than mine. I was diagnosed when she was 3 months old and can only imagine how difficult it must have been to find out you had cancer while you were pregnant. Your strength and amazing attitude are inspiring and I have no doubt you will come through this like a champ!

Hi Kerri,

Glad you are getting more answers and that your final treatments will start soon. We are all thinking of you and praying for a full recovery.


XOOXOXOXOXOXOXOXOXOX KATE

Kerri, I have you in my thoughts and you're staying there! The wait to find out what's going on is terrible. See if you can get hold of David Servan-Schreiber's book, Anti-cancer, which has many good eating suggestions The very best of luck to you. Linda XX

Kerri,
As you can see from my signature, I had a "new" and rare cancer completely unrelated to oral cancer in my gut, which was removed approximately a year later than my original surgery on my tongue. My doctors at MD Anderson all say how they do not have lots of patients with my history, in one of them said that I am at the very end of the Bell curve. Our situations are certainly not alike, but fighting another cancer after enduring the first one is a common thread.

It certainly comforted me, to put an optimistic spin on it, that it was a new cancer, even though my second one had certainly been in my body for many years. It is hard on the body to have this new fight when you aren't truly healed from the first. You are MUCH younger than I and should recover faster. I just feel young on those days when I feel good! I get a little mixed up when I am trying to decide whether or not I feel bad (when I do) from radiation after effects, hypothyroidism, or having a roux en y, thus missing a duodenum and not absorbing nutrients. So your stuff is in the same area, and it can be an advantage!

You have excellent medical care, have a fighting spirit, and it sounds to me like you are going to beat this cancer. Plus you are one of those gods/goddesses of medicine, in my opinion: a physical therapist! You know the importance of exercise and movement.

Best,
Anne

Hi Kerri

Re work - I think I came through the treatment pretty well on the whole, and haven't been too tired. I went back to work (pretty much a desk job) part time 5 months post treatment. I did feel well enough to go back sooner, but I took everyones advice, including my medical team, to not rush it and as I was struggling to get my calorie intake high enough I wanted to be able to have time to concentrate on feeding myself. I am lucky that I was not under pressure from my work to go back sooner, other than being on half pay. I also don't have children to cope with.

So my advice to you is to take as much time for yourself as you are able before rushing back to work, espically as it is physical work (I used to be a nurse so I know how hard PTs work). I could probably have coped with a short course a couple of weeks into treatment but I actually felt a great relief on the day that I finished work, that I did not have to worry about it and I could concentrate on myself. Also you may find that the topic may be close too for comfort.

Sending you lots of positive thoughts.
Sally

Hi there... I used to do L&D and palliative. Don't miss it much, but seeing nursing in the state it's in these days wish I could come back if for no other reason, than the complete lack of interest most people seem to have in their job. At least I cared. Re the course... If its a one day course you should be alright but if it's longer than a week you might want to take a rain cheque. Usually around the 3 week mark things get start to get hard... Food turns on you, drinks particularly pop (ugh!!! Still cant drink the stuff - not that I want to) tastes horrible!!!!!!! And the sores start - I found manuka honey staved off the worst till the end... Thank god, but everyone has varying opinions on whether it works or not. I found it really helped, but that's just my opinion - mind you it is $20 for a tub and I still have half of it 15 mos out. So it was worth a try in my books. Hugs... You'll get through this!

Wow! Thank you so much for all of you posts, dear friends! All give me hope. I did finally book a hotel for this Friday night out in mid-western MA. I've never been to this area, but Dan said there's some nice sight seeing and we'll keep it low-key. I'm going to try my best to leave the beast locked in the box and make it a cancer-free 36 hours. No talk of cancer; try really hard not to think about it.

Then, I get my port placed on Monday. That should be a piece of cake compared to all else!

Cheryl: What is manuka honey and where do I get it? It will be a 2 day course, btw (Sept 15-16). I think I will have the opportunity to gain more knowledge about how cancer works, the different types of treatment out there, and as we know, knowledge is power!

xoxo,
Kerri

Hey there... two days should be fine! and take your mind off everything else for a bit. The vacation is great. I did the same thing. After dx and before surgery, my husband and I flew to florida a week before just for a few days - we'd traveled over christmas and it was okay but a bit abismal as we were waiting for a surgery day etc... but the trip to florida relaxed me and prepped me for the up coming surgery. Then after surgery we went away with the family as I recovered. People thought I was nuts but I figured, being home I would feel like I would have to clean and cook, away I would have someone else do that for me. (plus statistics support the theory that relaxation helps heal, mentally and physically and does affect the outcome of treatment.) So enjoy your trip and time with hubby.

Manuka you can find at any health food store - whole foods carries it. I used the 16+ they suggest buying organic, and pure manuka with an UMF of 12+ or above. It is natures hydrogen peroxide, it is antibacterial, antibiotic, and has good results in wound healing (sloan kettering did a study and found it was better that some of their wound healing techniques - though the H&N ca study was inconclusive) They are still running a study in BC or were last year on mouth sores etc. Do check with your drs. before using it but I imagine it should be okay, mine said go ahead.

I swear it not only helped hold off the really bad mouth sores - I had some blisters but they never opened up, until the very end of treatment, and I thought I was coming down with thrush just after treatment finished and my dr. said use your magic mouthwash it has nystatin in it ( I had been but it didn't help!) I had stopped the manuka the last few days of treatment when things got bad, so I sucked it up and started using it again (it stings for a bit before it soothes) and sure enough the beginning stages of thrush went away in a day or two. It also doesn't cause cavities because it is antibacterial. this was mentioned in the study... and someone explained it here when another member asked.

Anyway have a great time away - you more than deserve it. hugs.

I finally have my radiation simulation scheduled for this coming Tuesday (8/28/12). My port goes in the day prior. Things are starting to happen, which is good, but it's now becoming more concrete in my mind that this is really happening. It's funny how the mind works like that. STILL waiting for my HPV status on my tumour. I was supposed to get 2 returned calls this week, but nothing. I know it's a low priority on the phone triage list, but c'mon. I'm going to call my SO tomorrow because he has clinic hours. I'll get an answer then. PLEASE, IF THERE IS A GOD, LET IT BE POSITIVE!!!

Post and rant over and out!

Love you all!

Hi Kerri, you'll be alright. My best wishes are with you, just take good care of yourself and be positive.

I'm obviously not sleeping when I should be. My 3-year-old will be up in 4 hours...

I'm sitting here reading the package inserts for my chemo meds, carboplatin and taxol.

I generally know about carboplatin compared to cisplatin from reading here, but I don't know much about taxol.

My MO said that I probably won't lose my hair, except for some in the back (underneath), from the radiation.

Anyone out there have experience with these drugs alone or in combo? Did you lose your hair. Taxol cited alopecia, more than carboplatin did. I'm just curious. It's not a huge deal to me if I lose my hair, but I just want to know what to expect.

I'd appreciate any input.

Thanks,
Kerri

Taxol will likely cause hairloss - sorry to say it. Radiation depending on the location of the beam will also cause hairloss - it'll grow back in quickly though - my friend has had 3 different chemos so far and they're switching her to a new one - each time she loses her hair. The last one was taxol... And yup... She lost it... But it was back two months later. - little sprouts - short hair looks good on her. I know hair seems like nothing compared to everything we're going through but despite the fact that it seems frivolous - to a lot of women It does have meaning, for me it was a sign to everyone - I'm sick... not something I wanted to advertise - don't get me wrong - I didn't want to hide it - but it's all about normalcy.

Hugs - i know its not something to look forward to. I'll pray you have extra strong follicles

I'm okay with it. I'm just hoping it will grow back straight and maybe not gray

Hi Kerri. I hadn't heard anything from you, so I figured I would check on here. The hair I lost from rads grew in super soft, so I buzzed it and it grew in normal. My husbands dad, when he had chemo and lost his hair, it grew in the same essentially, soft like baby chick hair and he shaved it off and it grew in normally, but grey, but he was 53.
You are still in my thoughts.
I wish you luck with the treatment and the tube stuff. They didn't put my tube in until they felt I needed it in treatment. some people can make it through treatment without it, while others need it. I ended up with a PICC line because I couldn't eat or drink for 12 days, so they put the PICC line in cuz I was still a ways away from when they had scheduled to put the PEG tube in. But I was like Cheryl, I didn't tolerate the feeding tube well either. Hopefully all of your stuff will go well, or you won't need it!
You are in my thoughts!

Hi Kerri. I just saw this, but I had 4 recurrences less than 2 years. I jst finished my 3rd neck dissection, radiation during surgery, and a neck flap. I'm going to do reiiridation and chemo again. Good luck.

Oh, Paul!

I am so very sorry to hear of such a horrible experience! You must be wondering what the f**k is going on! It makes not sense! Do they have any idea why this is happening to you? Was your cancer HPV+?

I will be thinking of you and hoping for the best as you enter treatment yet again. I hope you have a strong support system in place. I cannot imagine how one would handle all of those recurrences.

Thank you for taking to the time to think of me and wish me luck. You must be a fighter to have made it this far. I look forward to seeing you back here as you are able.

With great care,
Kerri

Hi I know Paul from another blog and Facebook - I'm sure he'll be along to explain but he had complications with chemo that almost killed him because of this his treatments were delayed - I know I'm oversimplifying things abd I'm sure he'll elaborate - but gets to hoping they got it ALL this time!

Hi Kerri,

Induction chemo messed me up from completing treatment. After the 5 days of TPF I was hospitalized for 6 months, could not walk. That did kill the cancer, but it came back, as just chemo does not cure tonsil cancer, so I could only do radistion, no chemo due to my body no being able to take it. Then had a rcuurence and had a RND. Then recurrence again, Neck dissection, which had positiv margins, and cancer came back, so I had Anothet neck dissection, radistion during surgery, and a pectoral flap. I have no real support team. I support myself, bsdically. I go everywhere along, and lucky to get a ride home after surgery.

If you were here I'd offer you a ride!! sorry you have to go it alone.

Paul, I'm so very sorry that you've had to travel that sh***y road, not only that, but alone.

I cannot begin to imagine what you have had to experience. You definitely deserve a break (more than a break)!

Thank you for sharing your story. I will be thinking of you and hoping for smooth sailing from this point forward.

xoxo,
Kerri

BTW, dear friends...

My tumour is HPV-, so they are going to more closely compare the slides side-by-side to try to determine if this is a recurrence or a new primary...ugh! I'm not sure which will be better, prognostically.

If a new primary, they will feel they can implement all of their arsenal of treatments instead of feeling restricted by what they did before. Hugs to you. I know how tough this is, but you can and will get through it.

Donna

Thank you, Donna. It seems as though you had a very tough road for a while, but you've been doing great ever since. We all need hope! Xoxo

Hi, All.

I just wanted to give you an update.

I saw my SO on Friday. It wasn't the best news, but it's kind of what I what I expected.

I told you all that my tonsillar tumour is HPV-. My SO is still convinced that this is a new primary tumour vs. a recurrence.

I asked him what this meant prognostically and he couldn't give me an answer because I don't fit into any of the demographics. He said...this is your second carcinoma, separated by significant amount of time, and you don't have any risk factors. He said that he doesn't like that this has happened at all. Further, he said that he thinks I have a good chance of beating this because I am young and that they are going to be very aggressive in my treatment because I can handle it. He said that I am going be basically watched like a hawk. *Sigh*

I know this isn't the most clear, flowing post I have written. I just wanted to sputter out the basics.

Treatment begins Wednesday, with chemo and rads. I will have chemo every Wednesday, and radiation daily. I feel exhausted and the wheels haven't even hit the road yet. I have a cold, too. F'n fabulous as I have to put that gigantic bite block into my tiny mouth and breathe through my nose. Sorry, just venting...rambling.

I feel like this has been the longest month of my life...waiting for treatment to begin. The first time I had OC, I was diagnosed and surgery was 2 weeks later and the cancer was gone. This time around, just knowing that it's been in my body dividing, thriving has made me nuts! Just get it out, kill it so it doesn't kill me!

I'm trying to remain grateful for the wonderful things I have in my life and all of the help I have...the amazing things that people are doing for my family. At this moment, I feel guilty because I am so angry and bitter and sad for myself. Cognitively, I know that guilt is a useless emotion, but I have just mastered it lately. I just want to scream. I feel like there needs to be a line of people waiting to shake me back and forth and slap me across the face (like in "Airplane").

Rant over and out.

Later my friends...

Oh Kerri - I'm so sorry you are having to go through so much. No need to feel guilty that you are angry and bitter. Let it out. Be angry!! Vent all you need to! And use that anger to give you the energy to fight like H E Double hockey sticks!!! You are young. You have family. You have friends to support you and every reason take on the Cancer beast! You can do it! We are in this fight with you. Come back here often and let us know what's happening.

Hugs girl... I totally get it... I was the same way from the minute I was dx'd - I was - get it the hell out now. You are actually part of a small demorgraphic... Pandora here (my Canadian compatriot) has also had a second primary 2 years out and she's still here and doing well... There was someone else as well way back - they went for a different try of treatment - but as far as i know theyre still around. Good thing is you don't need your tonsil - so hopefully they'll throw the book at you medically and scare that crap away! good luck Wednesday!

Kerri, I am so sorry to read of your latest doctor visit. You know we are here to listen and help get you thru this. Its ok to rant and be upset, we get you!!!! Please try to take this in small bites to help so you dont get overwhelmed. First, you have cancer, next you are beginning treatment very soon, third it will NOT be fun at all, fourth you WILL get thru this and recover.

Now, knowing everything you do already makes it hard to only think of the big picture. But if you focus on other things it will make this so much easier to get thru. My idea to help you take your mid off your troubles would be for you to make today a fun day for you and your family. Go to the park, have a picnic, take a walk with your husband, go to the drive in movies, play mini golf, go out for ice cream, take a drive in the country, stop at roadside stands and pick up some fresh veggies, get some flowers and replant them (mums are great this time of year), go to a county fair or carnival, if you are near the shore go to the beach, etc..... Just get out there and make the most of today, it really will help to make you feel alot better.

Good luck next week!!!!

Kerri,

Sooo sorry that you will have to have the rads/chemo but we will also watch you like a hawk and do whatever we can to help.

Thank you, dear friends. Sometimes the demon comes out of the box in the wee hours of the night. Some minutes, hours, and days are better than others.

I can always count on you all to bring me back.

Just a random question that I can't ask my team right now due to it being a Sunday. I have a horrible headache and tylenol isn't cutting it. I don't suppose I could take ibuprofen at this point due to its blood-thinning properties? I keep forgetting to ask. I'll have to write this one down. I just need some relief right now.

Thanks so much. Love and health to you all.
xoxo,
Kerri

Kerri,
I don't know the correct medical answer to that, but it is important to get rid of your headache, too & if ibuprofen is the ticket, why not? You aren't having surgery, where blood thinning would really be an issue. You're having the shorter chemos I think. They are somewhat easier to bounce back from.

I suppose/hope you don't have your headache anymore. Yes, I too would get to a situation where I did not know if I could take this, or eat that, or whatever, and then would try to remember to ask. Write it down, make a running list of questions as they come up. You'll get through this. I felt like a light weight going through all that radiation/chemo stuff, but you know what, it didn't matter, cause like you, I'm tough.

Anne

Kerri, do you have any vicoden? I was told not to take ibuprofen during treatment but vicoden was safe to take and helped a lot with the headaches I got from my first Erbitux infusions.

Be well,
Tracy

Kerri

Wishing you the best with treatments starting Wednesday and even better after treatments end.

Kerri

Ibuprofen for a cancer patient with recurrence! Even Vicodin sounds too light IMO. Each time I had radiation and chemo, my RO would prescribe me 100 Percocets for the headaches, and referred pain and general crap. Trust me, it helps a lot with anxiety also as well as just laying there on that lead table.
Heck my ENT gave me a script for 50 percocet when she did the biopsy. NSAIDs never did much for me.
Seriously, pain medication is your friend at this time but under the DEA rules, YOU HAVE TO ASK and ask firmly but politely. [quote] Hint: the correct answer to "On a scale of 1 to 10 how would you rate your pain?", is always 8 or higher. [/quote]
Oh, and being angry, yes indeed, normal healthy reaction.
Charm

The ibuprofen with have cleared your system by the start of treatment - Wednesday. Don't suffer. Take the pill. Hugs

Hi Kerri

Probably a bit late for your headache but you raise an important question about the use of NSAIDS during treatment. Alex was also told to avoid NSAIDS and at the time we just accepted it and didn't question why (lot of other stuff going on at the time).

As Alex was not scheduled for surgery, one wouldn't expect that bleeding time / platelet aggregation would be an issue (unless they expected him to gush when they stuck him with so many needles ). At the time, I assumed it was a precautionary step to give him nothing that might interfere with potential heroic measures should things go pear-shaped (which they did).

But now I wonder if there is an interaction with the chemo drugs or even radiation that might preclude them for some reason. Or it might just be that adding more pressure to the kidney when one is taking cisplatin is not a good idea.

This question has been asked a few times on the forum and I haven't seen an explanation - just recommendations not to do it.
Get advice from a proper doctor - there might be a really important factor that none of us know about.

Karen

PS Ibuprofen is one of the shorter acting NSAIDS and your platelets should start going back to normal within 24 hours. Aspirin is at the other end of the scale requires generation of brand new platelets and can take a week to normalise.

Thanks to all who commented on the ibuprofen question.

I actually took 10 mg of oxycodone and it literally did nothing. Some time later, I broke out into a dripping sweat and thought I was going to vomit. I know this wasn't a reaction to the meds because I have been taking them since my tonsillectomy. All I knew was that I had to lay down and cool off fast. I put ice on my forehead and called my sister, who is an NP. She thought I was likely having a migraine.

I took some Excedrin and went to bed with the ice. I felt significantly better in a couple of hours. So, I guess that combination did the trick. I just had to lay perfectly still or else I thought I would get sick. I've never had a migraine, to my knowledge, but that was awful. I feel badly for those who get them frequently.

Thankfully, Dan was home to take over with the kids. I'm lucky to have him for many reasons.

Thanks for all of the advice.

Charm, I'll keep that number in mind. I have to ask it of my patients all the time and it's a PITA! Some people have such a hard time answering it, I just give them the smiley face chart that we use for kids. It has been studied that the most reliable way to measure a patient's pain level is to have them make a hash mark on the 10 cm horizontal line. The left side is "no pain" and the right side is "worst pain ever". The distance is measured against a scale that was developed by these researchers (I have no idea of the developers) and that calculates your pain score. Although it has been determined and accepted to be the most reliable way to quantify a subjective thing, such as pain, no one ever uses it because it takes too much time! So, I don't feel so badly making up some arbitrary number, such as 8/10 on reporting my pain. The insurance companies don't care, Medicare doesn't care, so why should I care? In fact, if I forgot to get a pain scale report on a given treatment day, I'd always put down 7/10...a good, safe number that doesn't really matter to anyone but the patient anyway!

Ha Funny Kerri!!

I wrote another paragraph about the one thing that helps me with my migraines but deleted it thinking it inappropriate/irrelevant.

That one thing is Excedrin Migraine which I have to get from the US because it is unavailable here. I don't know if there are different versions of Excedrin but the one I take has a combination of acetaminophen (same as tylenol), aspirin and caffeine.

If this is the version you took, probably best you let your doctor know when you go in on Wednesday - just to be safe.

Glad you sorted yourself out though - migraines are a bastard and I am an expert having suffered every month for the last 20 years.

Karen

Nothing says "the pain is unbearable, give me drugs" like the number 11 in my opinion

Good luck tomorow.