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Getting started...Next line of questions?

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Mark and I met with NCI Cancer Center Head and Neck doc today. 99.9% sure the primary is in the tonsil. Very good odds 80-90%. Sugery first: 3 installments: endoscopy on Monday to get tonsil biopsy and get a good look at other stuff. Tonsil removed robotically on Friday, and then 10 days later the lymph nodes in the neck come out. 1 month later to be followed by Radiation definitely and possibley Radiation and Chemo.
Asked about the PEG, they will wait and see how he does. Asked about gaining weight, doc said not necessary, asked about which chemo: Cisplatin. Asked about IMRT, that is a yes. Not need for the PET at this time...false positives can waste time on wild goose chases. PET later.
Feel I get a better sense of what lies ahead here on these message boards. Perhaps doctor not talking about the brutality is a strategy to keep people calm.
I must say, my anxiety was low and my knowledge base was high because of what all of you have shared with me. As caregiver I feel I am in a very good place going in. May be harder for me as it gets harder for him...to see him in pain, or sick, or unhappy. I know you all are here.
What do I need to know now?

bfisher5560's picture
bfisher5560
Posts: 7
Joined: Mar 2010

It is wonderful news that he qualifys for robotic. Is he having it done at U of P with Weinstein or O'Malley? It is great that you have started out so informed. I wish we had known so much of this information 2 months ago. Good luck!

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Kimba,

Your news is relatively good and similar to mine though they didn't remove the lymph nodes.

I would ask your Doctor about Erbitux and why they haven't suggested it ?? It is apparently a good 'Target Chemo' and also known to work well with Cisplatin. Do some googling on it. While it can produce a nasty temporary rash, there are few other side effects.

Also, many people get Amofistine during treatment which somehow protects the Salivary Glands during radiation. (again -google away) This is also a question you need ask your Doctors as if all goes well, and your BF makes a full recovery which is most likely, he may have a chance to avoid probably the worst long term side effect. Loss of Saliva makes eating especially, and sleeping difficult and also compromises your dental health as the enzymes that protect your teeth are gone.

Not to scare, but while bearable, the surgery is quite painful. I was released after 4 days, but readmitted shortly after with bad pain as a result. When they excise the tumor, they can't really stitch anything up so he will have a gaping wound in his throat till it heals which is quite quick. He will need about 6-8 days to get to a good level and will most probably need some heavier pain medications esp during the first 4-6 day. I was given Paracetamol, Vicodin and Morphine/ Pethadine in various combinations.

Your Docs view on the PET is strange to me. I would have thought it good to get more information ?? Also the weight deal .... we all agree that it is best to beef up a bit if you can (although I was detoxing and full on into the 'cancer free diet' from diagnosis to the start of treatment). Even my doctors said to 'eat up' before treatment. He will almost 100% surely lose weight.

Sorry to bombard you but these points might be of great importance and you have a good handle on what's going on now so you can manage these questions.

Cheers
Scam

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Kim,

I was dx Jan 15th with stage 4 scc. ENT did not know the primary, so I had surgery the next Friday.
Radical right side neck dissection. Endoscopy, Tonsillectomy and lymph nodes all at one time. The next Friday 6 teeth removed. Everything happened very quickly with me. The ENT set up the surgery, the oral surgeon, the rad oncologist and the chemo oncologist. After surgery the primary was found to be right tonsil. Have his teeth checked if no one has advised you to do this. Finished my last treatment April 9th, 6 rounds of chemo-Cisplatin and 5FU and 33 rad treatments. I have a port and a peg and have used both extensively. I had a ct scan of my chest and stomach before surgery and also a pet the day before surgery.

Seems like you have got things pretty well in hand, Mark is a lucky guy.

Best,
Steve

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

I wish you all the best. This a wonderful place for advice and help. Please keep us updated. My dad has stage III or IV base tongue cancer and is getting ready to start rad/chemo this week or next.

You are both in my thoughts and prayers!

Kathy

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

The PET is generally used to set up the radiation plan. It;s the PET image that they use as a map to target your radiation plan. I'm curious as how they do it without the roadmap?

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Hi Kimba, I'm also curious about the doctors decision not to do a PET scan. After being diagnosed with NSCLC in my left lung they ordered a PET scan and this was how they found out that I also have SCC laryngeal cancer. The laryngeal cancer was much more advanced than the lung cancer so I was lucky they found it.

I'm glad you have a treatment plan scheduled and seem to have a positive attitude. I'm sure Mark will do fine and all will go well. I had cisplatin and was one of the lucky ones, I never lost my hair - LOL. I did have bouts of nausea but nothing I couldn't handle and only vomited a couple of times.

My best to you and Mark,

Glenna

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Same as mentioned above, it makes me wonder if that decision might be insurance based.....

A few notes on my experiences, I only had one lymphnode involved as a secondary to the tonsils (primary right). They opted not to perform any dissections on me in hopes that the chemo (Cisplaten, Taxotere, 5FU then later Carboplaten/Radiation would either reduce the tumor or dissolve it. This was at least an attempt to have a less invasive approach to that area with surgery. In my case it seems to have worked as the tumor dissolved during the 6 - 8th week of Chemo, and was clean during the post PET.

I also did have the majority of the Amifostine injections just before each daily radiation head shot. I as most people seem, did start getting reactions to them around the 30th round. In my case I was getting extreme temperature swings or fever. Once I stopped the Amifostine, I was good to go for the remaining 5 rads....

As for the Cisplaten, I'm not sure which had the most effect, but I did lose most of my hair, but it all came back (or at least what I had before LOL). I didn't really have any sickness at all, but I also had Emend to take for the first three days of Chemo (the big three cycles)...Emend must be the best thing ever. Like I said, not one episode of sickness, check into it if offered.

Hoping all of the best experiences for you and yours.
John

Fire34
Posts: 353
Joined: Feb 2010

Kim
Unlike Joe I dont know about it being a target chemo but that was one of the drugs I used also. My care was close to what John describes above. The U of Chicago did not like neck dissections unless absolutely neccessary. My Erbitux was with Taxol & Carboplatin. While inpatient it was with 5FU and Hydroxyurea and twice daily radiation for 5 weeks.
First PET and CT tumors shrunk and inactive, no dissection needed.I was part of a clinical trail with Erbitux also.
Like John advises above check into the meds for all the side effects tha might be encountered. U Of C was pretty up on them and mine were mild except the acne from the Erbitux, LOL
Best wishes and Prayers
Dave

j3rey
Posts: 56
Joined: Apr 2010

Hi John.
I have a question for you. You said that you only had one lymph node involved so your med team opted against the neck dissection. How did they know that no other nodes were involved?
We are set for the neck dissection this week and are feeling anxious. It is my understanding that they will remove the involved node and several others to for biopsy to make sure there is no spread.
Thanks so much for sharing your experience. It is really helping to read posts from someone who has been through all of this.
Jen

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I had a question today of the doctor because Mark may need a RADICAL neck disection because two nodes are involved. The side effects of the radical are of course more extensive than the SELECTIVE neck disections. I asked if they could chemo and radiate first to get the size down and keep it to the less extensive selective neck disection. Anyone have any thoughts on that? Doctor thought it was an interesting question worthy of some thought. Anyone radiate first? Surgery second?

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

My stage 4 left tonsil tumor was wraped around my Carotid Artery, and would, at times, stop the blood flow to my brain. Hence I would pass out due to low blood pressure, but come to in about 3 to 5 minutes if I laid on my left side. The multi-disiplinary team decided to go along with the Head and Neck surgeon and NOT do surgery until the tumor had been shrunk (if possible) from around the artery. Due to the aggressive growth of the SOB, they set the protocol of 8 rounds of cisplatin...2 rounds of 5FU...2 rounds of Taxtera... and 36 straight (Mon-Sun) rounds of radiation. The bottom line........after all the chemicals and ray gun zaps....the tumor is gone, so NO SURGERY.

My treatment was very, very rough, and the head of the team was the surgeon, Dr. Anna Pou. Dr. Pou was also going through a very rough period in her life at the same time being that she was accused of murdering 9 patients at Memorial Hospital in New Orleans (which was totally impossible...and was just a politically motivated act to blame someone for governmental inaction during Katrina.) Anyway, she saved my life and she always says that I kept her sanity by working with me. Every two-month appointment with her, turns into a celebration of life for both of us. Gotta chance ?? Read about this great Doctor.
http://search.intelius.com/Anna-Pou

Larry

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

OMG Larry. I remember reading and hearing about Dr.Pou in the news. 60 minutes I think did a piece on her. Amazing story you have about how you each needed each other: life for sanity...pretty fair exchange.

My partner's tumor/tonsil also comes very close to his carotid artery, which makes his 2nd surgery still a "maybe" a good maybe, but still a maybe.

Can I ask what kind of side effects (lasting and not lasting) you have from that seriously aggressive treatment??
Kim

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

During the month of May, 09, I was deep into concurrent radiation and chemo and by the time treatment ended (last June 6th...D-Day) I was pretty much a basket case. The month of June was miserable being that all I did was pour nutrients down the peg tube, and the crushed meds with water. Bout all I could do was watch NCIS marathons...cough junk up....throw-up 4 times a day....and make a vain effort at trying to talk. I had a pump for using the peg-tube at night, which was really helpful. July was almost as bad, due to loss of balance when I tried to walk. August was when it started to get somewhat better, as I hired a personal trainer to slowly get me back in the human race. Twas a good decision.

Lasting side effects ?? Currently lots of tingling in my feet and hands (Neuropathy). I sure hope this condition goes away. Lack of saliva...about 30% of normal. Always with a bottle of water. Tinitis...ringing in both ears due to radiation. Seeing a really good Audiologist about this condition, but may have it a long time. Lymphodema...turkey neck...nightly excercises seem to keep this under control or not look quite as bad. A very intense teeth regimen just to keep them.

Not lasting side effects ?? Can now speak well and swallow most foods (thanks to Speech Therapist). Balance is much better....no more walking into corners and hitting my shoulder. Tube is gone, and I now sleep "normal" hours. I find that I don't get crabby or complain as often, or at all. When Mark becomes a survivor, he'll realize that things that once would tick ya off, don't really matter much anymore. It's like a whole new set of values or something kicked in back in the ole basket case days. Good luck, Kim.
Larry

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I can only go on what I was told during diagnosis that only one node was involved, and they PET scan.

Like CajunEagle, we had quite similar treatments with exceptions.

My ENT was concerned with the location of the node being in close proximity to the carotid. He felt that that a dissection would be as an after action to the chemo and concurrent chemo/radiation if necessary. His thought, logic and experience would be to see what effects that the chemo and radiation had on the tumor. It would either dissolve it, reduce the size (being a less invasive surgery), or nothing to it. If it dissolved it great, if it reduced it, good less to remove and better odds of nothing else going on during surgery. I it didn't do anything then surgery was still an option.

During the second round of chemo, the tumor was reduced significantly, sometime during the third round it was gone and confirmed with a CT before I started the concurrent seven weeks of chemo/radiation. Although unfortunately it was advised that I should complete treatment and not stop. Knowing that the radiation was going to result in lifelong damage to some degree.

After the concurrent and a few months post treatment, the PET scan shown no signs of cancer, residual or tumor.

So at this point, I have just been having three month scans, which just recently moved to my next scan in August (six months) for a PET. If everyhting stays clean, I get my port removed next February.

I think the regime of treatments vary depending on facilities, doctors, etc... In talking with them at the time, it was kind of a toss up between which to do first, some (in the medical community) felt that chemo/radiation first then the bigger doses of chemo should come next. Mine felt that studies were more favorable (results wise) doing the larger doses of chemo first, then chemo/rads concurrent.

I've seen others that have done the neck dissections first, then either just radiation or concurrent chemo/radiation.

I can only speak of my experience which seems to have been a good choice and decisions by my doctors.

As for side effects, I don't think I had anything that bad in comparison to some. Yes I lost hair, my throat was tore up for seven weeks or so, mainly the latter part of the radiation and few weeks following. I never got sick, slightly de-hydrated once. I never had the thick mucous or phlegm like some. I did lose a lot of salivary function (though I have regained probably 80% of it back this last month or so). I lost most taste but have gained most back, just not as intense (it's my new normal). Although I haven't gained much back concerning a lot of sweets, which isn't really a bad thing. I had the Turkey Neck thing going on, but that's almost gone completely as well. I still have the Lhermitte thing (electric sensation when I put my chin to my chest), but that's mild.

I still do drink a beer now and then, and it tastes great..but tends to dry me out, so I only drink one or two beers a week if that.

Overall, I think I am very lucky and greatly blessed to have gone through what I have and still be in good shape. I'm 56, all of my blood counts and labs are back normal, GFR is normal, cholestrol, blood pressure and I'm not on any medication.

Also, I did not have the PEG, not by any decision on mine. My doctors whom I trust explicitely felt I didn't need it. I think a lot depends on where you are health, weight, mentally, and physically going in to this ordeal.

John

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Your job is going to get harder before it gets easier, although it will get easier over time. I have always contended that the caregiver's job is harder than the survivor's, and I insist on that to this day. Given the choice of experiencing cancer or caring for a loved one with cancer, I will take the cancer. I assume I am not alone.

With that in mind, I offer this bit of advice, in case it has not been said before to you: to be a good caregiver, you have to take good care of the giver. Make sure that throughout this ordeal you make time for yourself, whether it is a walk around the block, a visit to the mall, hanging out with friends for dinner once or twice a week, whatever. Make time for yourself, and let your guy know that you are going to do this not only for yourself but for him.

If my wife's girlfriends had not come and rescued her on occasion, I am fairly certain she would have gone insane (on some days, if you ask, I would also say that she HAS gone insane, but this is not the place for that :)).

One other thing you should consider, if Mark is going to get the radiation, is burn prevention/treatment, in case this also has not been mentioned. Ask his rad doc about this. In this board I have heard of success with aloe vera and aquaphor among others, and I personally used something called Biafene post-treatment (my wife is a wound care nurse and swore by this stuff at the time, in 2006).

As for the chemo, they will provide, hopefully, some anti-nausea medications and if not (that is rather unthinkable, but you never know), insist on them.

Best wishes to Mark and his family and friends.

Take care,

Joe

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

All that you do, Kim, going-in. Looks like Mark is gonna be put thru the ringer. Your Med team will make it easier for him to actually deal with than you, at this time, think it will be. It will be rough, Kim, but that's the roads we all travel. Think you have done one heckuva great job of being informed. It is, Kim, a time of history for you two. Thus, the calling for him to be strong, and for you to have extraordinary patience and caring, which I know you will have. No matter what, Kim- be there for him. He will need you more than he will ever realize. It's soon to be Come What May time for you two, just like that time is remembered by all of us. Joe knows where this can take a couple.

The Cisplatin is the bad stuff. Would agree with Scam about inquiring in regards to the other stuff. Drs. might have their reason for Cisplatin; and, that's okay, so long as it's not experimental, unless Mark is up to that task. Cannot comment about the PET- other than the False Positives are a known issue with them; and, at this time, perhaps a PET will only have real value after the battle has been fought.

Very glad you shared this with us. Stay with us in this journey you share with Mark, and know all of our hopes and Prayers will be in the sharing.

Believe

kcass

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I have all my notes and questions prepared in the areas of surgery, chemotherapy, and radiation...all thanks to all of you. I have already had the experience of a doctor asking how I know to ask such knowledgable questions. Tomorrow we start. Endoscopy with biopsy, the final diagnostic piece. From there Mark's treatment plan will be developed. You all are amazing to have gone through this battle and then be there after, and even during, to help others like me. AMAZING!!! I am strengthened by being prepared. Thank you!

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

that we are all here and active, Kim. Helps everyone of us to be able to help others, like you and Mark. Really does.

Big day for you two tomorrow. Please keep us informed. And, please keep a Positive focus, and

Believe

kcass

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

"You all are amazing to have gone through this battle and then be there after, and even during, to help others like me. AMAZING!!! I am strengthened by being prepared. Thank you!"
I think there's something that happens to you when you go through this experience and come out the other side. For me, it took a really self-centered guy and turned him into someone who wants to help others -- particularly those going through what I and most of us here went through. If I can help grease the skids so the next person coming down this path doesn't have as hard a time as I did, then that's pretty cool.
Lord willing, I will retire in 442 days (not that I'm counting), and once I'm retired I plan on volunteering at my local cancer center or for the cancer society, wherever I can be of help.
For me, cancer was a good thing.
But it still sucks.

--Jim in Delaware

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Congrats on the upcoming retirement Jim....wishing you many years of a relaxed one at that.

My wife and I have also become more involved with volunteering. While I was doing my treatment, we were always amazed at the people that would come in to the chemo center volunteering their time.

They would be there asking if I needed blankets, drinks, etc... Sometime there would be a lady there dressed as a clown, she'd put a small clown nose on you, some beads or what not and take a photo of you and your care giver. Another time there was a person there tying balloons into animal shapes.

My wife and I have volunteered for a few things recently, one was dealing with a local downtown evening block party honoring the Arts in Medicine (cancer survivor art).

I also just participated in the ACS Relay4Life... That was pretty cool to be a part of, honoring cancer survivors with a relay around a local high school track (18 hour event). It was kicked off by a Survivors Walk (first lap around the track). It even had a lighted candle ceremony later in the evening.

It was very moving and I'd recommend involvement in any such events. It will do you good, I can guarantee it...

John

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

An excellent plan, Jim, going forward. Know you will find the experience rewarding.

John, cudoos to you and your wife, also. In regards to such as this, I have fallen far short. This forum is my one avenue to help others, so far. 55, and now working 51-hour/weeks, six days a week, my free time is pretty much none, especially with what is going-on with me and a little something called "sleep." I do commend you and your wife, John, for your good works. Truly.

kcass

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I hear you on available time Kass. Both Shelley (my wife) and I work 40 hour work weeks. That leaves only evenings or week-ends. By now you all know that I love to fish and do it nearly every Saturday weather permitting. Of course that also depends on my getting all of my "honey doos" and yard work out of the way during the week.

For the Arts in Medicine thing, it was on a Friday evening and only a block from where we work. So I went home first and took care of our two chocolate lab babies, then returned. A side benefit of that volunteer effort was that Disney gave you a one day park pass for volunteering. That ended up being a double benefit as when we went (this past Saturday) they let us upgrade to three more days for only $20.

The Relay4Life was actually a Team Relay that someone at work started and I joined in. It went from Friday evening six PM, until Saturday morning at nine AM. I mainly solicited donations (as everyone did) and did the survivors walk at six (Shelley and I). Then we hung out and helped in other ways.

Actually we did pretty well, I think team wise we collected $1700 between the seven members and of that I colleceted $395. Monies collected for the American Cancer Society.

John

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