any thoughts

Hey there....
I'm sorry you found your way to this website however welcome. Although I'm a caregiver to my significant other, you will find this site VERY VERY helpful. Lots of resource on here with personal experience. Someone will ALWAYS answer your question(s) or just allow you to vent. Although I don't post much, this group of people are amazing and they helped me through this-even as a caregiver.

Mike had 40 lymph nodes removed March 2010 and 2 were positive. Our physicians suggested both chemo and radiation and he agreed to both. It's like they were offering 2 life jackets...take them both. The radiation treats the local area where as the chemo is systemic and kills any circulating cancer cell floating around in the blood to keep them from attaching to anything else.

Pros: Two types of treatment attacking one horrible disease. Mike had 3 cycles of Cisplatin an did well.

Cons: They both suck but you have one REALLY good shot at getting rid of the cancer now. Most on here will agree that radiation is worse because its treating a specific area for many weeks but YOU WILL GET THROUGH both.

Those are my thoughts...hang in there and god bless.

Chris

Hi Wyatt. I was just
Hi Wyatt. I was just wondering what your primary was? Did they remove that too? Or is it unknown?

This can be a difficult decision. I had a neck dissection, 23 removed and 3 positive. Despite a PET and exploratories they didn't find my primary. In addition to being diagnosed with SCC I also have a very rare genetic blood disorder called Fanconi Anemia. Chemo is not a plan because it would probably kill me, most likely. Tho my doctors here did recommend it. But with Erbitux. I refused. Radiation is also not tolerated well for my FA so I went for three opinions. (2 opinions pro rads and one said do nothing) I decided to do radiation only.

I was too afraid to take the risk of doing nothing. It was a tough call I had to weigh my options heavily and prayed a lot. It has been a long hard road for me. I think my FA issues made for pretty severe side effects and a much longer recovery time for me with a little bit harder issues to deal with now than some. There are many others on this site are back to a normal life with working and eating and doing every thing that they did before treatment.

I finished treatment 5/15/09. It took me a whole year to get back to semi normal. It has been an adjustment for me physically and mentally, but I am glad I am here and I count my blessings everyday and I don't dwell on things I cannot change. Wishing you only the best whatever you decide.

Blessings,

Sweetblood

Thoughts
Wyatt: Sounds much like me. I had the neck dissection with I think fourteen lymph nodes removed and four that were positive. I was advised to do the chemo with the radiation. My understanding is that the chemo basically supports the radiation or is basically like someone said a second life preserver. Everything was a rush for me as I was in stage four and all my doctors wanted to take immediate action. I personally did not have any real noticeable affects from the chemo. The radiation however did severe damage to me. Not trying to scare you as radiation affects everyone differently. I will be at the end of February four years post treatment. I advise to get all the information you can get from the doctors. Ask all the questions you can and do not be afraid to ask questions. Hopefully your side affects will be much less than mine have. My thoughts and prayers are with you as you begin your treatment. Hang in there and God Bless

Hi wyatt


My first time I did not do chemo just radiation and my NPC cancer came back about 11 months later, the second time I did do both Radiation and Chemo. I am not sure what type of head & neck cancer you have but talk it over with both your Oncal and ENT doctor and don’t be afraid to drill them with questions.

PS: Welcome to the Family

Take care
Hondo

Hi Wyatt,
Welcome to CSN. It has truly been a lifesaver for me. All my questions where answered here. I just finished radition, chemo wasn't really an option as to the rarity of my cancer and there being no testing with chemo. I was diagnosed with mucoepidermoid carcinoma on the left floor of my mouth. Neck dissection with 16 nodes removed none postive thankfully. Also the whole floor of my mouth was removed and replaced with a skin graft from my thigh and a muscle in my neck was moved to fill in the "hole". I just finished radiation 30 IMRT last tuesday. It is absolutely rough. I started pain meds about my 3rd week, was unable to eat for quite a while but drank protein shakes. The worst part of radiation for me was the pain and trying to control it. I also had loss of taste, pain in my ear, neck, jaw and teeth, mouth dryness. I'm sure there is more. I bought all the Biotene products and used them. I used the baking soda and salt rinses. I tried a sample of Caphosol but it was just like the baking soda and salt mixture. It's just hard, but if I can get through it anyone can cause I'm a wimp! Good luck to you. Take Care, Shelly

Radiation Side Effects
Wyatt,

Some of the main side effects like you mentioned are salivary gland damage. This can be permanent, partial or temporary. One thing that they had me do during radiation was to have Amifostine (Ethyol) Injections each day just minutes before radiation (6000gr on the left, 7000 on the right). I still have all of my teeth that I had going in...three check ups since and everything is holding up to date.

This served two purposes, mainly to salvage salivary function down the road. Secondly to help relieve the thick ropey phleghm that can develope during radiation.

I have been blessed that I'm now 18+ months post treatment and have regained nearly 95% or so of both taste and salivary function, never had the thick phleghm either.

Both saliva an taste took many months or close to a year or more to get to the point that I'm at now.

Other sides to the radiation is the possibility (high possibility) of thyroid damage. But that's somewhat easily maintained with synthetic thyroid meds.

Lack of flow to the lower jaw bone which could mean hyperbaric chamber sessions if you have teeth pulled.

Still at least to me, better than the alternative.

I also had nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU, followed by seven weeks of Carboplatin (weekly) and the 35 daily rads and injections.

They can give you Emend for the chemo to help with nausea, I never got sick at all during that period.

There's a few other temporary effects from the radiation also that I forgot to mention;

Turkey Neck (swelling of the throat or neck) do to the lymphatic fluid flow being messed up. This usually fixes itself over time.

L'Hermettes Sign or Syndrom, a shock sensation when you tilt your head forward that goes all of the way through your arms or legs to your toes...again, usually goes away in time....

All are doable, we or many have gone through most of this and are still here to tell you that you also can make it.

Best,
John

Skiffin16 said:

Radiation Side Effects
Wyatt,

Some of the main side effects like you mentioned are salivary gland damage. This can be permanent, partial or temporary. One thing that they had me do during radiation was to have Amifostine (Ethyol) Injections each day just minutes before radiation (6000gr on the left, 7000 on the right). I still have all of my teeth that I had going in...three check ups since and everything is holding up to date.

This served two purposes, mainly to salvage salivary function down the road. Secondly to help relieve the thick ropey phleghm that can develope during radiation.

I have been blessed that I'm now 18+ months post treatment and have regained nearly 95% or so of both taste and salivary function, never had the thick phleghm either.

Both saliva an taste took many months or close to a year or more to get to the point that I'm at now.

Other sides to the radiation is the possibility (high possibility) of thyroid damage. But that's somewhat easily maintained with synthetic thyroid meds.

Lack of flow to the lower jaw bone which could mean hyperbaric chamber sessions if you have teeth pulled.

Still at least to me, better than the alternative.

I also had nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU, followed by seven weeks of Carboplatin (weekly) and the 35 daily rads and injections.

They can give you Emend for the chemo to help with nausea, I never got sick at all during that period.

There's a few other temporary effects from the radiation also that I forgot to mention;

Turkey Neck (swelling of the throat or neck) do to the lymphatic fluid flow being messed up. This usually fixes itself over time.

L'Hermettes Sign or Syndrom, a shock sensation when you tilt your head forward that goes all of the way through your arms or legs to your toes...again, usually goes away in time....

All are doable, we or many have gone through most of this and are still here to tell you that you also can make it.

Best,
John

Hello everyone,
It is so

Hello everyone,
It is so helpful to read all of your posts. We seem to be dragging here at my house for action. My husband will have to have all of his teeth but 7 pulled. He goes in tomorrow for molds and then we'll see when the removal is. He has opted out of a neck dissection but has agreed to do some biopsies in the back of his throat AND then radiation for 8 weeks. The neck dissection was an issue because the ears and nose doc said loss of the use of arm, this that and the other, worse case scenario. If you remember, the PET scan said no cancer anywhere. They are saying there could be cells swimming around in the neck where the cyst was removed, the nodule inside of the cell was scamous cell carcinoma with the hpv virus in it. Ok, you all probably by now realize how new I am to this. I have two questions for John specifically, John said:
"One thing that they had me do during radiation was to have Amifostine (Ethyol) Injections each day just minutes before radiation."
Can you tell me if I should ask for this for my husband? We are worried about saliva glands being damaged. If this helps why isn't it common procedure?
Second question:
Lack of flow to the lower jaw bone which could mean hyperbaric chamber sessions if you have teeth pulled.
He is having his teeth pulled, what is hyperbaric chamber sessions?
And lastly to everyone. It seems like everyone had some chemo. I will ask the Doctor about this on our next visit! I want him to have two life preservers too! Thanks again, Liz

Liz K. said:

Hello everyone,
It is so

Hello everyone,
It is so helpful to read all of your posts. We seem to be dragging here at my house for action. My husband will have to have all of his teeth but 7 pulled. He goes in tomorrow for molds and then we'll see when the removal is. He has opted out of a neck dissection but has agreed to do some biopsies in the back of his throat AND then radiation for 8 weeks. The neck dissection was an issue because the ears and nose doc said loss of the use of arm, this that and the other, worse case scenario. If you remember, the PET scan said no cancer anywhere. They are saying there could be cells swimming around in the neck where the cyst was removed, the nodule inside of the cell was scamous cell carcinoma with the hpv virus in it. Ok, you all probably by now realize how new I am to this. I have two questions for John specifically, John said:
"One thing that they had me do during radiation was to have Amifostine (Ethyol) Injections each day just minutes before radiation."
Can you tell me if I should ask for this for my husband? We are worried about saliva glands being damaged. If this helps why isn't it common procedure?
Second question:
Lack of flow to the lower jaw bone which could mean hyperbaric chamber sessions if you have teeth pulled.
He is having his teeth pulled, what is hyperbaric chamber sessions?
And lastly to everyone. It seems like everyone had some chemo. I will ask the Doctor about this on our next visit! I want him to have two life preservers too! Thanks again, Liz

Chemo Sides - Liz Questions
Yes chemo comes with many of it's own demons as well;

Tinnitus - ringing or buzzing in the ear

Neuropathy - loss of feeling in your finger tips and or toes

Hearing Loss -

Brain Fog or Chemo Brain - memory loss

Tons of other sides I'm sure, sometimes temporary, other times not.

I had some tinnitus going in and it doesn't seemed to have worsened. As for other sides from the chemo, I haven't really had anything lasting that I'm aware (maybe brain fog, LOL...)

Liz,

There are several others here that have also had the Amifostine. I'm not sure that many radiologists buy into it. It was my chemo MD that actually prescribed it for me. Her main reasoning was elimination or reduction of the thick ropey phlegm, but also salivary retention.

I can only say that I feel it worked out for me. I still lost most all salivary function for several months. But now being 18+ months post treatment, I have regained nearly all. Only during the night and sleeping do I still tend to dry out.

A lot of people including myself usually start having reactions during the final few days of the Amifostine. For me, I started having sever temperature swings around day 30 of my 35 scheduled days.

My temperature would swing anywhere from 102.3 down to 96.8. During that week-end when nothing was scheduled, no temperature swings. The next Monday, again after the Amifostine and radiation, later that night very high fever.

So we stopped the Amifostine, and finished out the last few days with no further problems. Others have had complications, a few have had none.

As for the teeth, some like myself whom still have all of their teeth. Because of the radiation damage potential to the lower jaw, extractions could be risk increased infection. This is do to the lack of blood flow to the lower jaw possibly leading to infection, then bone infection.

To help with blood flow, they can schedule you for about two weeks of daily hyperbaric chamber sessions which increase oxygen content and pressure to your body (jaw bone), forcing additional blood flow.

I haven't had the need, but there are a few on here that have gone through it, or are much more educated to the process than I.

Best,
John