I appreciate being a part of this board. I have
so many issues, it is overwhelming. My husband
was diagnoised last on 2/28 to tonsilliar cancer
T3N1M0. We are preparing (he is dragging his
feet) for teeth removal, peg tube. He is to
have 7 weeks of radiation with chemo given along
the way. He has HEP C as well. He could NOT
tolerate the drugs (similiar to chemo) for
treatment of Hep. C. His blood count dropped and
he had to stop treatment. Why should I think
this will be any different????
Has anyone heard of Proton Radiation? I had
a friend with prostrate cancer and he elected
Proton Radiation for Loma Linda University
in California. There are no side effects from
this type treatment. He is cancer free and has
been for several years. I contacted the
University and sent his records for their review.
They responded by saying that he could have
the Proton and would also have to have regular
radiation, but no chemo???
I need some help and suggests or other options.
He is 48 years old.....
Thanks for your time!!!
Patsy
patsy.
hi just wanted to say hello. My husband too was diagnosed with the same cancer and required same treatment as your husband. I want to tell you that as scary as it is you will get through it. It takes alot of patience on our parts as the caregivers. You will have really hard days and really good days. Just love each other remain positive and be strong. We just finished treatment and I wont lie there is times when you feel helpless as a cargiver that there is nothing you can do but dont let that get you down. I hope all goes well for you and your husband. You will be in our thoughts. As for the Proton radiation cant speak to it.. from canada and never heard of it. Would be interesting to hear more about it. Good luck and keep strong.
My husbands best bud just finished a few months ago at the Loma Linda treatment facility. He had the proton tx for his prostate and was thrilled with the results.
As for the road ahead, I cannot say anything about the Hep C but the rads and chemo are an experience for sure. He had IMRT which burned his skin pretty badly. He has never lost his ability to swallow or talk and he says his throat does not hurt. He completed 37 rad txs last Tuesday.
I know all about the dragging feet thing and I can tell you that the teeth pulling thing almost stopped him from doing any of the txs. I have no idea why he got so stuck on that ONE tooth but he was determined to find some way to keep it. He wanted to do a root canal or something, anything, just not pulling. He took it to an extreme level of frustration until I just went forward, made the appointments and made sure that he was there. It wasn't as devestating as he thought it would be and looking back now, it was the mildest part of this process so far.
I would say that if you can afford to go out to Cali. that maybe you should try it. We couldn't go that far and my husband's best friend lives in New Mexico so it wasn't as far for him. He swears by the treatment though and it was the first thing he recommended to us when Harry was diagnosed. I cannot say about how it works on other kinds of cancer though so you might want to do some research on your own.
I wish you both the best of luck!
Cindy
PatsyJo, welcome to the site. Sorry you needed to find us. I have heard of Proton radiation but I don't know anything about it. One of the more senior members on this board knows about it. In fact, you can do a search on the main menu and get the information previously posted.
Also, one of the guys that has been around the block, sorry I don't remember who, has HEP C as well and went through the entire rad/chemo thing and did quite well. You might want to do a search on that as well.
How many teeth are the dentists recommending to be pulled? I had two pulled and a lot of folks think no teeth should be pulled. Are you being treated at a major comprehensive cancer center now? If not, go to one the get the best care. This isn't the time to cut corners on the cost.
I presume the treatment protocol is similar to mine in that your husband will have 35 rad and 3 ciplatin chemo treatments every 21 days. If that is the scenario, it worked very effectively for me in shrinking the tumor in my lymph node (it mestasized from the primary in the tonsil) and making the surgery much less invasive. If that is your plan it is a good one and worked well for me.
The peg tube is important in keeping the nutrition up which is critical in fighting this disease. He is now in a war and must use all of the weapons he has to beat the disease. It is very aggressive and unforgiving. Hit it with all of the weapons available including the kitchen sink. Pray all will go well with you both and your family.
Thanks so much for the info....
He already has had 7 teeth pulled but they are
wanting all them out!! We are being seen at
the Texas Cancer Center in Dallas. Our ENT
said it was too soom to go to MD Anderson. It
was highly recommended, but so were other places.
We have to travel 40 minutes to get there.
Your protocol is the same that they are suggesting. Reading the information in this
forum, I am learning about other possible effects
of the chemo/rad that no Dr. had mentioned.
Hearing loss ....did you have that? I am
just really scared about all of this....too
much to take in. What side effects do you
worry about and what else do we not know???
I am trying to keep it together...but I have a
lot to learn.
Thanks for listening!
Patsy
Hi, Patsy. Hang in there...
I can address the hearing loss issue for you. Tom already suffered from tinnitis (ringing in the ear) when he was diagnosed. I suspected a slight hearing loss, as well, but he'd not believe it. His 'baseline' hearing test was actually given after his first cisplatin treatment, so it might have already been on a decline, but I know for certain that his hearing is not as good as it was this time last year. He tells me that very often now, he lives with "the cicadas," as that is the sound going through his head 24/7. I forget to ask if it is now remaining, or coming and going. He hasn't had a follow up test, but I know he won't hear the higher tones at all.
You are doing great "keeping it together," and we'll all help you get to the end of this. As Tammy says, love each other A LOT and keep positive even when he can't. I've really learned what being supportive is all about - and whew! I'm sure glad the worst of that job is behind me!!!!
All the best
Nicki
I have hep C, and didn't even know I had it until the CCC I was at requested that I be screened. I had Cisplatin and didn't have any liver issues. They will monitor liver enzyme levels as a precaution. There are several of us here with hep C.
I wouldn't let them pull my teeth. The teeth and gums HAVE to be in good shape to withstand the treatment however.
One thing you forgot to mention about PBT is that they typically use IMRT with it as well. I would have strongly considered PBT if I had it to do over again. MD Anderson feels strongly enough about it to invest 200 Million in a new facility just for it.
Here is a link for information about PBT for those interested:
http://www.llu.edu/proton/ or
http://www.proton-therapy.org/ We also recommend across the board to always go to a comprehensive cancer center. This disease doesn't like to give second chances. If nothing else at least have them review the case. You must act fast - they typically won't touch it once treatment has started.
It normal for low red and cell counts as a result of the treatment. He can get Procrit and blood transfusions if necessary.
Hearing loss is a RARE adverse effect of Cisplatin. There will be distinct warning signs first and it can be halted before permanent damage. Many of us here suffered temporary hearing loss due to the radiation impact on the eustacian tubes which is a different issue. They should do a baseline hearing test PRIOR to treatment.
Remember that we all respond differently to treatment. There are some here that drove themselves to treatment every day and continued working. People talk about radiation burns on the neck and that varies widely also - I had a mild sunburn and that was it. Don't live in fear of what hasn't happened yet.
I recommend getting a book "Living Well With Cancer" by Katen Moore and Libby Schmais. It was written by oncology nurse practitioners. It answered about 98% of my questions as I went through the treartment and side effects. If you click on the Amazon link on the link below OCF will get a small benefit from this.
http://www.oralcancerfoundation.org/products/books.htm
Gary is correct about hearing loss being rare, but I was one of the "special" persons to whom Cisplatin was very dangerous. After just two treatments, my hearing became ultra sensitive, and things like crumpling paper were extremely painful. That went away but thanks a wise older doc who had seen one of his patients go stone deaf, I was switched to Carboplatin and Taxol and have no hearing loss today. Also, no cancer. Bottom line, it is rare, but it can happen, so pay attention!
PatsyJo, I recommend you go to MD Anderson right away. They are one of the best in the world. I traveled to a cancer center here in Miami and the trip was 60 tp 90 minutes one way (depending on traffic). I drove it all 7 weeks of my rad treatment (except for when I had the chemo when I was checked into the hospital). So don't worry about a drive. It is worth it to get the best treatment. Having all of the teeth removed is an extreme position to take. I am not a doctor, but I recommend you do all you can to keep as many teeth as possible.
Each of us react differently to treatment. I had some hearing loss at the top end, others didn't. I didn't know about the risk, so I didn't get a baseline check before I had my treatment. I don't know how much I lost, but I know I lost some because of the constant buzz in my ears. Oh well, a minor issue compared to what the loss might have been.
Dry mouth is probably the most bothersome issue, but it is dealt with by carrying a bottle of water. That is an easy solution. There is also some loss of strength and a little pain from the neck dissection. I am building that up though and hope to fix it totally some day. The pain is minor, but I have a high tolerance to some pain and I don't take any meds (not even Tylenol) anymore. Others have had a lot of pain.
There are many other issues that occur during treatment. You just have to deal with them as they come up as some patients don't react to treatments and others have a high reaction. We'll be here to help as you go through the treatment.
Ya'll are wonderful. I am so glad I joined this
board.
I am very much for the Proton Treatment and I
knew he would get "regular radiation" as well
but NO CHEMO!!! I didn't really understand
the medical reason, but the nurse said proton
would take care of the need for chemo. I too
agree that if MD Anderson is investing in the
unit, it works. MD Anderson's will be completed
withing the next 18 months.
We would have to live in CA for two months and
yes, it would be an expense. I can't convince
my husband Bruce that this is a better option,
regardless of the expense. We would manage
some how (not really sure but Oh well)....
The drs here said since he is Hep C they would
have to modify the chemo as we went along.
If he blood gets too bad they would have to
stop radiation, etc until he recovers and then
start again. Oh great....prolonged treatment???
I think he is not wanting to fight back. Both
parents died while he was young (17) and feels
he is domed. His brother at (50) is in a
nursing home with a incurable heart condition
and wasn't suppose to be alive today.
I learned from just reading the posts here, that
I really don't know much about what is going to
happen. I have to get with it and learn more
to help him make the right decision on his
treatment. I trust the doctors that we are
seeing now, but I want to be sure this is the
right road to take.
Thanks for you help....
Patsy
Patsy,
It looks like there are only 3 places in the US to get this treatment. It seems like pretty good stuff. On the "no chemo" issue, and I'm only speculating here, they seem to be in the early stages of treating cancers other than prostate. Gary, any thoughts? The chemo might make it difficult to track the effectiveness of the treatment. I AM NOT SUGGESTING THAT THEY ARE RISKING HIS LIFE. Personally, I would be happy to go for post radiation chemo if I could have less injurious treatment. Bottom line is that you need to educate yourself, meet the doctors, review the treatment options and make the choice you are most comfortable with. And, unfortunately, the financial impact of being treated in another city enters into the decision.
Glenn
I see this has been well discussed under a different topic area, and by better minds. Never mind!
Dan had Chemo but only as adjuvent to Radiation.
My question is......
Why do some get teeth pulled and some do not? Dan had tonsil cancer, does it matter if it is tonsil, tongue, jaw etc.
Thanks
The chemo they would most likely be giving him would be Cisplatin which is an adjunct to the radiation.
Since no one here yet has come back with a report on PBT I have no thoughts on that either. What I have read however is that it shows great promise as the treatment of choice for many cancers, particularly where healthy tissue loss must be avoided such as in the head and neck or prostate. The IMRT they give, as an adjunct to the PBT, probably isn't the whole boatload in contrast to those of us where it was the only radiation treatment modality.
Most treatment centers have some provision for housing so don't let that be an obstacle.
As I said earlier I too have Hep C and they never had to modify my chemo - I was monitored very closely however. Interferon is pretty tough stuff - some say worse than Cisplatin.
They did reduce it by one treatment. I had 2 vs. 3 because the tumor responded so well to the treatment.
Your husband can be a survivor too and have an even better life than would have ever imagined but he can't wimp out. He has to put on the armor, take up the sword and get the right mental attitude. There is typically no genetic relationship with oral cancer so his fight is unique and not tied to others so he throw the past out -this is his own fight. There are many of us here who are survivors and were advanced staging.
Patsy....don't hit your return key as you are entering your text into the little white box. .It is designed to just let you keep typing, and then in the final product, as you can see in everyone else's posts, the text automatically resizes to fit the screen.
PatsyJo,
Welcome to the neighborhood. Sorry you had to find us but I am glad you are gathering as much information as you can in preparation of perhaps the battle of your (and your husband's) life. I am a little curious how you picked the place you are going. In case you don't know, UT Southwestern is in the final stages of their certification process to become a National Comprehensive Cancer Network member. They are also part of the University of Texas system like MD Anderson.
I am not sure why the team would recommend radiation without chemo but as Gary suggests, I would use every weapon in the arsenal to beat the beast the first time around. In my case, I had some molars pulled when I was young and I did not spend the money for bridework earlier and because of the angle of the other molars, they strongly suggested removing all of my remaining molars to prevent issues at areas that I could not effectively brush or floss. Without the radiation, I probably could have made it many more years but the fear is that once infection sets in (after radiation), it could be life-threatening. Ironically, the insurance company refused to pay for the extractions done while I was getting a mediport and PEG tube placed. After almost two years of battling with them, they have finally paid but then they refused any implants. Their words were to the effect the only reconstruction covered would be breast prostheses since the law required it. I couldn't find any use for that...or at least didn't see how it would help me eat better
so I opted out.
What your husband is going through right now is pretty much the course that I took. It is a devastating diagnosis and the more you learn about the treatment, the more scared you become. Many have traveled the road ahead of him and any of us will help both of you in any way possible!
I had just completed my Hep C treatment when a lump popped up in my neck and after 7 months of doctor rounds, I found out it was cancer that had already spread to two lymph nodes. The first thoughts that came to my mind was related to the rough Hep C treatment and what a waste that had been. I had a little anxiety that the Hep C would return as it is a virus and the body was going through massive stress during radiation and chemo. However, 18 months post-treatment I have had almost monthly blood work and the virus appears to have been kept in check. My liver enzymes elevated a couple of times and one even slipped below normal which mystified the medical team.
If there is anything I can do or if you have any questions please let me know. I am wishing you nothing but the best as your plan evolves.
Ed
Hi to all...
Very interesting about UT in Dallas, our surgeon was there but left it up to us on using UT doctors or one closer. Since, the Hep C, he said using our current onocologist would be fine.
Loma Linda is in the process of setting everything up. Is is normal to have second thought on treatment options? I want to throw up every minute and question myself on the really knowing the facts.
How often can a person receive treatment. Do people go through it more than once? A lot of you have had surgery first then treatment. Our doctor said it would be too disfiguring and they want to shrink it first???? Does this sound correct?
My gut feeling is to try the PBT and the regular radiation. I know he was sooooo sick during the HEP C treatment, he had to quit. His blood count and his constant vomiting was just too much. I just don't think he will make it on the traditional treatment emotionally...knowing what he went through before.
Thanks for all for your support.
Patsy
Patsy,
Hello & I am sorry to hear of your trouble. I just wanted to chime in & say my friend had a very large tumor on his tonsil. The doctors told him the same thing that it would be too disfiguring to do surgery first. They would try to shrink it with radiation & chemo then maybe talk surgery. The rad tx & chemo completely eradicated the tumor no surgery was needed. The pet scan showed him cancer free in Nov. 04.Hopefully this will be the case with Bruce. God bless! Maureen
Thanks Maureen......good thing to hear. I pray that will be our case.
Patsy
My husband also had tonsil cancer that went to three nodes. He had a radical neck dissection to remove node as well as his tonsil and tumor. This doctor felt this was Dan's best bet at beating this. After he healed he had radiation with 3 rounds of Chemo.
I guess every doctor has their way and all patients are of course different....Dan did have his mandiblectomy (spelling wrong I am sure) so they would get the tumor and tonsil out in one piece do to wear it was located.
It has been 3 years and 8 months, he had his latest CT scan last week and we find out results this week. Dan said he wanted to be hit with it all at once and be done with it
Good luck to you