My daughter starts radiation Thurs (IMRT) for stage 3 base of tongue cancer. The surgery revealed 1 involved lymph node out of 26 removed. As we get closer to this dark part of the journey I'm now trying to find out all I can exactly what will be done. Just found out today that they will be radiating both sides of the neck (assumed it would only be the surgery side). Is this the normal procedure? She's doing so well right now - RO says she's in the "honeymoon stage" where the surgery pain is tolerable & she's able to eat & taste again. I understand that will go away in about 3 weeks when the rad burns take over (thank goodness for the PEG). T'm guessing the holidays will take a vacation for us this year but that's ok as long as she gets through this - she has 3 children who are desperately afraid for her.
Other than the salivaries, are there any other possible permanent side effects from the rad? And how long after rad does 'normalcy' return? Her rad will run right up to Christmas.
Thanks to all of you who post - this board is a Godsend!
Bonnie
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Caregiver to daughter (age 41, non-smoker/drinker, aerobic instructor), SCC base of tongue, Stage III (N1M0), Dx 9/27/06, partial glossectomy + modified radical ND 10/16/06, Tx 30 IMRT start 11/9/06
Bonnie,
The first 2 weeks of Rad are usually OK. In the 3rd week she should notice her taste being affected and some soreness. Remember not everyone is the same. You also haven't mentioned concurrent chemo? Chemo can make a difference.
After she starts feeling the effects of rad, they usually get worse and worse until about the 2nd or 3rd week POST Tx. I came out of my dark tunnel in the 2nd week post TX and have steadely gotten better and better BUT I never would have thought so the way I felt during Tx.
Not only will they rad both sides of her neck but I would think they will also do the middle of her throat it get the BOT.
As far as permanent effects of Tx, I was told that my taste and my salava production will return. It may take a year or so but that's what I was told. My taste is about 60% of normal now(my est) but my dry mouth is a no change. I did experience a perm hearing loss due to the chemo as I was told but my chemo doc says he's not sure if it will be perm. I hope he's right.
I would let her know that this will probably be the worse experience she has ever had BUT TELL HER THAT"S NORMAL, EVERYONE HAS A ROUGH TIME. My docs kinda down played how bad I would feel assuring me that they had meds for everything....WRONG !! When it seemed that nothing they gave me helped, I started feeling like I was abnormal and perhaps worse off than they were telling me. Only after finding this group (2 weeks post Tx) did I realize I was normal. Knowing that during Tx would have helped my psychie.
Mark the end of week 2 following Tx on her calendar so that she can at least see a target for exiting this dark tunnel she is about to enter. Also mark 2 months to the day after Tx on her cal and tell her she will feel 80 to 90% normal by then. My rad doc did that for me and he was right on. I didn't believe him at all until it happened but it did and it also helped me get through my tunnel.
Dear Bonnie, From the vantage point of someone who has been dealing with this [2 sugeries, rad. chemo and now Erbitux] for almost 2 full years, my advice to you is this. Try to stop worrying about what might happen so far in the future. Your daughter might well get through rad tx. with few lasting side effects. And return to "normalcy" is different in time and by definition for each person experiencing this. It is quite possible that since Thanksgiving is just around the corner, she will not feel to bad then and can enjoy being with her family. Christmas may be a rougher time. Just read all you can on possible side effects of rad. tx. so you all are not caught off guard if she needs stronger pain meds or more hydration, etc. There is lots of info here on keeping her skin in good shape, having a suction machine for her, if needed, and extra ways to get beneficial calories down the peg. Let the future "what ifs" go for now. Her kids will stay calmer if they feel like you all are in control and have a handle on things. If it is appropriate for their ages, give each of them a job assignment that is theirs for the duration of her treatment. They will then be helping her to get well. I know this is all easier said than done, and I am wishing your family the best luck through this. Stay strong. Amy
Bonnie,
Since there is lymph node involvement, the radiation will usually target at both sides of the neck to play safe. I had treatment in November too and when it was Christmas time, I was staying in hospital already because I had high fever and very low white blood cell count. I had dropped almost 16 lbs and the doctor had to observe me more closely to avoid further complications. I think your daughter's situation should be less severe than mine as she doesn't have concurrent chemo treatment. Moreover, she could have enough nutrition through the feeding tube. I won't describe any period of treatment as 'honeymoon' but I agree that the side-effects for the first 2 weeks of radiation should be minimal and then as effects accumulate, the patient will feel rather sick, physically and mentally. As reflected by members here, IMRT can save the salivary glands and therefore mouth dryness should be bearable. There may be a change of taste for some time but people can have most of the normal taste back in a year or two. For me, the sweet taste is still far away from me but for others, it is pretty normal. Of course everyone heals at different times and reacts differently to treatments. Don't worry and be strong.
Karen
Bonnie,
My husband just started his rad treatments 11/1. I take every day one at a time and sometimes one minute or hour at a time. So far he is doing well, some changes in taste are starting. We go with the flow for his food intake, whatever sounds good. Tonight was Chinese food. He also had surgery first, modified radical, 30 nodes. No chemo involved for now.
Hang in there, we have small kids at home. They help with dad and we go on as normal as possible. Keep your chin up for them.
Barbara
My 79 year old father has 2 more days of radiation for level 4 base of tongue. He's doing so well and even still drinking some. Got a little dinner down last night.He has not started the patch yet but we'll most likely start that this weekend as he's on a regular dose for pain relief. He has not voiced one complaint through this whole thing. We ring the bell on Monday. (A tradition at Anderson for those who have finished radiation) Hang in there!
Hello Worried Mom,
I am currently in my third week of IMRT radiation and about the only thing I have noticed is I can't taste anything, and today my throat is a little sore. I too am having it on both sides of my neck so I am guessing this is pretty standard, I am also undergoing chemo at the same time and the side effects of this are pretty much bearable. i would encourage your daughter to just relax and go with it. Take one day at a time that is the only way to do it. When she feels good have her go with it and do what ever she thinks she can, and on the bad days just get lots of rest and know that it is her bodies way of rebuilding itself. IMRT is the best radiation there is to offer and we who are recieving it are very lucky. Mimimal damage if any is being done the healthy areas in our neck, and most of these not so pleasant side effects go away after treatment is stopped. I use a meditation I learned from a friend during the treatment and find that I am very relaxed and ready for the day when I am done. I am looking at this as not so much an inconvenience but an opportunity to learn more about what life is about, what is really important to me, and what I can do to help any one else who is undergoing this treatment. We are very lucky to have contracted this desease today and not 10 or 15 years ago, we have not been given a death sentence, we simply have caught a treatable desease and we are being treated. Help your daughter see that her life has not changed, she is still the strong wonderful woman she was before this happened and with the love and help of her friends and family she will be a stronger more caring woman when this is over.
I am going to take only positive thngs away from this, there are days that is not too easy to do but in the end it makes the treatment more barable and I am hoping me a better person. Good luck to the both of you. Your daughter and you will both be stronger, better, women when this is done. Her children will be stronger also trust me.
Have a great day.
Pat
Hi Pat,
Welcome to the site and it's nice to see such a positive attitude!
I just wanted to gently correct a comment you made in your post concerning IMRT being the "best" radiation there is. That leads newcomers to believe that any other type of radiation is not as good, and I want to avoid that. I had XRT radiation and I eat, drink, swallow..........all of it. Not quite as good as before the radiation, but my life is still just as active, etc. I didn't have to give up anything because of the radiation and I have adjusted to any long term side effects. So, with that said............I'm THRILLED that you are able to have IMRT and I hope we soon see the day when that type can be used on ALL oral cancer patients. But, until that day, we need to make sure that any new patients looking for information on radiation know that XRT is just as effective as IMRT in killing the cancer cells........which is our main goal!
Take care,
Minnie
Pat,
Minnie's right -- while IMRT (which is a more recent development than XRT) has made some real advances in treatment of certain types of tumors and sparing healthy tissue, it hasn't made XRT obsolete for all cases. I had XRT 17 years ago, when IMRT wasn't even around, but based on my pathology reports I suspect that my doctors might still be recommending XRT for that kind of tumor today because it was poorly differentiated (i.e., didn't provide a good, defined, target to aim at). Also, because IMRT involves highly precise targeting, you want the treatment to be directed by someone who is very experienced with that technology -- having the most advanced equipment doesn't, by itself, guarantee the best results.
During a recent followup visit with my radiation oncologist, who is at one of the very large cancer units, I asked him about his use of IMRT vs. XRT today. He said IMRT has proven to be extremely useful and is appropriate in a high percentage of cases, but it hasn't eliminated the need for XRT in some instances. The point is to use the best possible set of tools for the particular case at hand.
Cathy
Pat, Minnie, and Cathy,
First let me say hello and hope all is well today. I also had XRT and everyones side effects that a typical survivor goes thru I have and they have not improved. That is O.K. with me because that is the price we unfortunately pay for survival. I was wondering if rad dr.s today give choices to newly dx. patients or do they just recommend tx. regimen and move forward. Or has IMRT proven to keep pace or increase long term survival. In a self comforting way I tell myself that all the lousy side effects we have long after tx.reminds me that radiation is a very powerful tool to DESTROY cancer cells. If I ever woke up and saw hair growing on my face where it used to I think it would scare me more. I think it is wonderful that we have choices today and Pat is right when she says 20 yrs. ago we would not have as many weopons at our disposal and Cathy and Minnea are walking and talking proof that QOL can be achieved regardless of tx. regimen. Sharing stories is one way of helping those behind us make difficult decisions and to raise awareness for a Cancr who's death rate is much to high.
IMRT like XRT is just a tool in the fight against cancer. Now IMPT (Intensity Modulated Proton Therepy) is being used by a few Tx centers which may be the next tool available in the cancer arsenal. I went with IMRT because my RO recommended it and he has written books on IMRT and is considered one of the country's leading authorities. Moffitt was located 40 miles one way from my home and I could have had IMRT 5 miles away but decided to go to the most knowledgeable source.
Hello Bonnie,
I just want sound off and reiterate what my fine board members have already stated. This is very doable. January 11 I had my one year anniversary. Within the past year I had a modified neck dissection, IMRT radiation x33 plus 3 rounds of chemo, a peg feeding tube for 4 months , I even had 39 HBO treatments. Simply stated Bonnie I put all 50 lbs that I lost back on, I was so worried about taste and swallowing, for the most part taste is back to normal, somethings just do not taste the same , especially sweets but I can do without those. I am always being told I am lookin' great these days people don't believe that I went through all this just a short year ago.Bonnie this will not be a picnic for your daughter but she can do this. With support of the likes of a mom like you she will do this easy. Hang in there and know that we are all here for you to lean on when needed, there are some awesome, strong, wise and humble people here for you .
Lenny
Bonnie,
I'm 4 years out, had IMRT and have all of my taste and most salivary function back. It took over 18 months for the salivary function to fully return. My sweet tooth is just fine and eating is normal, no trismus either. But it was no walk in the park during and immediately after Tx but you'll get through it one day at a time. For me, it was my only Tx (with ct). I also kept all of my teeth and still have all of them.
There may be some permanent side effects from the radiation. About 2 years post Tx I started having regular muscle spasms from the radiation damage to the neck muscle. Not really a big deal - Valium and Codiene fix it up just fine when I need it, which is not all that often.
I'm about one year out of XRT, have some saliva and much of my taste back -- I had Amifostine for about half of my XRTs until I became allergic to it.