New to this, Husband just diagnosed with stage 3 left tonsil cancer

Janet,

I can't add much more to what Phrannie and Matt have mentioned already. Yes, the data that you read is a bit outdated, when I was going thru Base of Tongue cancer in 2004, I was told by those here then that the data seemed to run about 10 years behind. That is for the Stats, not the treatments.

One person that is here "fishmanpa" also known as "T" recently completed his treatments for Tonsil cancer, I think he may be 3 weeks out from treatments now, so he will be a great source of information for both of you as Marcia was his caregiver as well. You and Ron are just starting and "T" is just finishing, can't get more up to date info then that.

As Matt stated, any questions, get them off you mind and answered here pretty darn quickly.

My Best to Both of You and Everyone Here

Rob was diagnosed Stage 4a SCC HPV+ Left tonsil 4 lymph nodes T2-3N2bM0 in March. No surgery. Lost 2 teeth

He has 4 rads and 1 chemo left. 

Has just about every symptom listed and is haveing a rough time. Has only eaten by PEG for the last week. Still trying to swallow water. The thick mucous is what is really killing him right now. 

Keep him hydrated. Rob has gotten dehydrated several times. He now has hydration 3 days a week. He is on 35 Rads and 7 weekly Taxol and Carbo. He vomited for the first time yesterday. He is having a lot of acid reflux. On his second bout of thrush. Very painful for him.

Your husband and mine will be survivors although while going through this horrible treatment they may not feel like they are going to make it.

Be prepared to take some crap from your patient. Try to remember that it is not you that it is the treatment that is making him be a little gruff with you and everyone else. They are in pain. Rob has never been snippy with me much but this is a whole new territory and I try not to take it personally. He does thank me every night and apologizes for putting me through this. He has never been a great sick person. Even the kids are hanging tough and luckily old enough to understand that this is not there dad right now.

Being the carefiver is rough, you are doing everything and you are emotionally and physically being taxed. Rest when you can. 

You both will make it. Keep looking for the light at the end of this tunnel it is there.

Sandy

janetluvsron said:

Thankyou robswife,
ron has

Thankyou robswife,

ron has never been sick except one time with pneumonia in the 32 years I have known him.

this should be an experience.

I fully expect him to dehydrate, but the dr's dont want to start with the peg tube. I dimed him out to the oncologist at our appt last week and he threatened ron to be put n the hospital a couple days a week for IV if he needed.

ron didnt drink enough during the horrible 2 weeks of recovery from the tonsilectomy.

the pet scan showed uptake in one node but they are not sure since it was so close to the surgical area and he is still healing.

But he is back to eating good for now, teeth are great thank god, and he is still working but plans on going out as soon as chemo starts.

He is a workaholic and it should be interesting to see him reinquish control.

I am very grateful for the postings and comments , please keep them coming.

thankyou

janet

either, He got it about 2 weeks ago. He lost to much weight, mostly because of the dehydraton. 

He has been straight PEG for feeding but tries to continuse to swallow water to keep those muscles working. He is fighting bad thick musous which I know is causing his low grade nausea. Going for L-glutamine today, hoping it helps. Trying to get him to take his compazine has been a huge fight.  

Rob has always been a huge workaholic and this has been very hard for him. Staying home is not his thing but just walking out to the deck is very tiring for him. He has never really been a sick person. The flu about once every tens years and he continued to work. 

Continue the good fight, you both will survive and life will be good once again. At least that is the thought that gets me through this.

Sandy

Hi Janet,

Welcome to the H&N forum, so sorry you answered yes in the cancer column.

I was scared too, but tuned in here and got some good advice prior to treatments.  Follow Phrannie’s advice and check-out the Superthread, it may scare you some more, so read it with one eye closed.  You both will be ok, just remember the objective is to get through these next few months and then you can start healing and adjusting to your “new normal”.

As soon as you are ready, ask any question you like and someone will chime in to help you out.

You will be ok,

Matt

My husband was diganoised stage 4 w/ tonsil cancer. His treatment is to be 3 Cisplatin treatments and 33 rad.  He has had 1 chemo treatment and 13 rad so far. As I am reading on here, I get very concerned because a lot of you have had surgery and have had different kinds of chemo along w/ more rad treatments and the Cisplatin..  I concerned his treatment plan is not enough. His medical oncologist showed us a print out that this is the ACC society recommendation but I am not sure when they updated their information.  

We got a third opinion and all agreed not to do surgery because chemo/rad has the same outcome.  We are hoping rad will burn his tonsils up.  It was also suggested that we get the feeding tube and like some others on here my husband has been in the less than 10% category.  He had to have a 4" incision in his abdomen to input the feeding tube because his stomach was to high. He also had hiccups w/ chemo and we had no idea that could be a side effect. But he was not nauseated at all.  He received fluids for 5 days after chemo which I think helped him a lot. 

We thought it would be much later down the treatment path before he would need to use the tube.  But He started using ensure in the tube this week. 

He has lost a lot of weight and we would love to stabilize his weight, but I Am not sure it is going to happen. Doc is telling him to eat anything that he can get down, But I worry about the sugar content, because we all know sugar feeds cancer.  

I want to juice for him but we have not had any support for this from any of the medical staff that we are working with.  There is not a Naturpath doctor in our area either.  I wish the medical field and the integrative field could work together, because I think our health would be better if they did.

I also want to say that I already love this site.  I have been reading on here many sleepless nights and you all are so kind and helpful.

GBC52 said:

Tons of Questions

My husband was diganoised stage 4 w/ tonsil cancer. His treatment is to be 3 Cisplatin treatments and 33 rad.  He has had 1 chemo treatment and 13 rad so far. As I am reading on here, I get very concerned because a lot of you have had surgery and have had different kinds of chemo along w/ more rad treatments and the Cisplatin..  I concerned his treatment plan is not enough. His medical oncologist showed us a print out that this is the ACC society recommendation but I am not sure when they updated their information.  

We got a third opinion and all agreed not to do surgery because chemo/rad has the same outcome.  We are hoping rad will burn his tonsils up.  It was also suggested that we get the feeding tube and like some others on here my husband has been in the less than 10% category.  He had to have a 4" incision in his abdomen to input the feeding tube because his stomach was to high. He also had hiccups w/ chemo and we had no idea that could be a side effect. But he was not nauseated at all.  He received fluids for 5 days after chemo which I think helped him a lot. 

We thought it would be much later down the treatment path before he would need to use the tube.  But He started using ensure in the tube this week. 

He has lost a lot of weight and we would love to stabilize his weight, but I Am not sure it is going to happen. Doc is telling him to eat anything that he can get down, But I worry about the sugar content, because we all know sugar feeds cancer.  

I want to juice for him but we have not had any support for this from any of the medical staff that we are working with.  There is not a Naturpath doctor in our area either.  I wish the medical field and the integrative field could work together, because I think our health would be better if they did.

I also want to say that I already love this site.  I have been reading on here many sleepless nights and you all are so kind and helpful.

Welcome to the group no one want sto join, but are glad they did. You, I'm sure have read so much on here and will gets tons of good advice.

My husband had the exact same treatment as yours will have. It is absolutely the standard up-to-date protocol. Whether a person hads surgery or not depends on a few things. Generally, surgery is done these days to get a solid pathological staging. It can help the doctors to be very specific with their radiation location and can detremine if you need chemo or not. For example, my husband's doctor thought that his cancer was at an earlier stage than it turned out to be. He wanted to do surgery to find out exactly how many nodes were involved and whether they showed extracapsular spread. The hope was to mabe dial down the amount of radiation and avoid chemo altogether.

But, it turned out that a few involved nodes didn't show up on the PET scan and one had extracapsular spread and so he would have the full rads and chemo anyway. Having the surgery and waiting to heal postponed the start of treatment. Fortunately, my husband had a very easy time with healing from the surgery so it was no biggie. Sometimes, after treatment doctors do a neck dissection anyway to make sure the nodes are cancer-free. I'm not sure that that is still done as I haven't heard of many here doing that recently.

But, if we had to do it over we probably would have skipped the surgery and would be a couple of months out from treatment by now (insted of a couple of days).

Also, I'm pretty sure the idea that cancer feeds sugar has been debunked. Of course, sugar isn't good for you and its best to get your nutrients from haelthy sources if at all possible, but I think most here have been pretty comfortable with getting calories any way they can. Its' only for a couple of months after all.

We never went for that ensure stuff but instead made healthy protein rich high calorie smoothies. I used a lot of organic whole milk and yogurt. I made smoothies with banana (ripe is best) paenut or almond butter with flax meal and whole milk. I used apple or orange juice with whole milk greekyogurt, banana, protein powder, frozen blueberries and kale (you have to have a good blender to do the kale and wash it really well). I would add oil (flax or olive) to things to get the calories up. It all worked great until recently. Now my husband is just soo smoothied out.

Also, where sugar is concerned, I think thrush is more of a concern than feeding cancer. My husband takes a high-quality acidopholis spplement and hasn't had thrush. Don't know if that's the reason but we're so glad he didn't get it.

Good Luck, you'll get through this.

Helen

I too was Dx with STGIII SCC Tonsil Cancer (right) and a lymphnode, HPV+... January 2009.

Tonsils came out first, port inserted next, I had no PEG.

Similar to a few, I had nine weeks of Cisplatin, Taxotere and 5FU... in three week cycles. That followed with seven weeks of concurrent weekly Carboplatin, and 35 daily rads sessions..., like Phrannie, daily Amifostine injections in my stomach.

The statistics you were given are pretty old... current survival rates and cure rates are much better...

Treatment is still very rough, but doable with the right attitude, plenty of hydration and calories, and knowledge...

You have found a great place as for knowledge and experience here...BTW all scans have been clean and clear going on four years in three weeks...

Best,

John