My Mother just had her follow up appointment with her IMRT Dr. and Chemo Dr. She is 4 weeks out from her last treatment. They did not want to scope her yet since they felt the tissue was still too irritated. I feel like I have so many ununanswered questions so I thought I would post them here since her docs did not address them enough (in my opinion).

1)She is having trouble swallowing. She chokes on most soft foods and can not get them down. The pain is minimal (on 50 mgs of Fentanyl). But she has a really hard time getting soft food down so she is still relying on the peg. I don't understand why she is having trouble swallowing. Is the throat swollen, is the tumor still there, is this normal effects of 37 IMRT's w/ chemo...or what else can it be?

2) Also her blood pressure is still very low. The docs say that isn't uncommon with chemo. But should it still be so low this far out?

3)She mentioned to her dr that she is considering an opinion from MD Anderson for surgery on the nodes regardless of what the 2 month scan says. Her chemo dr. gave her the impression that this is unnecessary (in the event of a good scan). She swears she will never have chemo again. In the event of a reoccurence or the cancer still being there she will not do chemo again. She had a brutal experience with her 3 chemo agents and only made it through 2 of the 4 weeks due to her toxicity levels and severe reaction. Because of this I feel that we should persue the idea of a neck dissection to be on the safe side.

Your thoughts and experiences are appreciated!!
Tami

Hi Tami,

1) I am not sure there really is a one case fits all for any of this. Even with IMRT, depending on exactly where the tumor is, the muscles and nerves used for swallowing could have received damage from the radiation. Some people can swallow sooner than others. I did not have IMRT but was swallowing most of the time at 4 weeks out yet at other times the food just stopped and the body forced a sneeze reaction that spewed the food out of my nose. I warned everyone to sit elsewhere when they parked across from me.

2) My blood pressure is typically 114/76 and was way below that for over a year. My temp also stayed around 97 after chemo for over a year and a half. At about the same time (4 wks) I blacked out many times when I stood up because of the blood pressure and even had the Doppler done on the carotids with no blockage noted.

3) A second opinion for peace of mind should be encouraged by any doctor. MD Anderson would certainly facilitate that process. Doubts at this point in the process will not magically disappear.

I, personally, chose no surgery even though the risks were there. I had scans during treatment and the tumors were gone before the treatment ended. I don't know if that was a good or bad decision and will never know but I decided that anyway.

I hope your mother appreciates all you are doing for her. I know it is tough so far away but at times like this we just do what we can. I am hoping for a speedy recovery for her.

Ed

Tami,
My last radiation treatment was in mid may. I still can not eat regular food. I can eat scrambled eggs and some soups but they still me make cough and gag but it is getting better. I have been off the peg now for about 3 weeks now. (I just need to get it removed shortly) just before I stopped using the peg my ENT had me see a swallowing/speach specialist who did a video of my throat with me saying "E".

She showed me where my throat was still swollen and red from the radiation and it would get better with time. She wanted me to swallow, swallow, swallow to help build up the muscles in my throat. She said that it would get better with time. It has been a tough road but it does get better with time. Some get better faster.

From reading some people's stories on how burnt their skin got on the outside of their necks and mine was minor. I think the inside of my mouth and throat got the worst of it and it is just taking time. I tried eating regular food that was not very soft and ended up twice back on the feeding tube. I am taking it slow this time. I drink my nutrients plus try to eat something soft every day.

It is weird that you mention about your mom's blood pressure. When I had to go get the paperwork done for me to have the neck dissection plus when I was in the hospital and they were checking my vitals afterward they checked both arms because they thought they were getting a bad reading but it wasn't it was just low. I asked if this was okay and they said that it was better to be low than high.

I hope this helps with some of your concerns.

My diagnosis came because my lymph nodes were swollen and after an ultrasound and mri they saw the tumor in my tongue. My ENT biopsied the tongue to be sure of what it was and it came back positive for cancer. He told me that I could have surgery first which would also require more reconstructive surgeries plus therapy and then radiation and chemo or do the radiation and chemotherapy first and then do surgery.

I decided to to the radiation and chemo first. My lymph nodes also shrunk but my ENT felt more comfortable to remove all the lymph nodes in my neck to be sure we did all that we could. He explained that he could not tell if my lymph nodes had cancer unless he biopsied them and to do that was to remove them. He felt that I needed to remove both sides since both sides were swollen.

I found out my results last friday and the biopsy of my tongue and nodes came out negative! I can breath a sigh of relief. I am still recovering slowly but I am getting better. I lost over 60 lbs and feel weak at times.
I have returned to work and I feel that this helps me build my strength up. By the end of the week I am very tired. I rest and go on.

If I had to do it again I would to know that I did all that I could to prevent this disease from taking over. I have a lot of work still left to do on this earth and this helped give me the strength.

I hope this helps.
Love
Terry

Hi Terri,
Your recovery sounds very similar to mine. I had my surgery first, but your recovery from radation is almost identical. I also got the brunt of my symptoms in my mouth and throat, with small burns on the outside of my neck. Two years and two months later I am eating well and will eat better soon as I am having implants put in to replace the teeth I lost.
Your doctor is a smart man and I like what he said about taking out the lymph nodes. I believe he is correct when he says that the only way to know they are cancer free is with a neck dissection.
Wishing you well with your continued recovery and GREAT pathology report on the nodes!
Minnie

Tami. I am still having trouble eating three (almost 4) motnhs post-rad because of mouth pain and a terrifically sore throat and difficulty swallowing. Now also I seem to be ahving the worst drymouth yet and that doesn't help either. For me right now the hardest thing is continuing to TRY to eat when it is so hard, I let days go by where I just do the tube and don't want to bother ebcause I've been discouraged so many times.

Thanks for all of the replies-
About the neck dissection question: Is there a window of opportunity that is important when getting this done post rad/chemo? My Mom is thinking of waiting until Jan-Feb to go to MD Anderson. Her husband bought her "her dream trip" to Hawaii and they were suppose to have gone already but it has been rescheduled due to her cancer being found this summer. It is now scheduled for January and she does not want to postpone it again. I am worried that waiting will be dangerous. Any thoughts on this?

About the carotid artery-I asked her oncology dr to do an ultrasound of it upon completion of her Rad. He told me that was not standard procedure. I asked him to do it any ways for my mom due to her elevated risk of stroke prior to cancer. To this date he still has not ordered this test. Can low bp be a sign of carotid problems?

Nelie sorry that you are still experiencing trouble with swallowing. What has the dr. said? Did they anticipate the use of a peg for this long? How frustrating this must be! I know how frustrated my Mom sounds and it has only been 4 weeks. I hope that you see some improvement soon!!
Thanks again everyone
Tami

Please remember that if there is a cancer in the cervical nodes, that lymph system is connected to the rest of your body. The lymph system is one of the primary pathways for this cancer to metastasize to other parts of your body and invade vital organs, usually with dire results. Putting this off till after the end of the year so a trip to Hawaii can be sqeezed in sounds like Russian roulette in my book. It has been posted here many tiimes regarding the 30% of stage one and two cancers that have occult mets to the cervical nodes not visible on any convnetional scanning technology. If she has a neck dissection now, she will be well healed up in time for a February trip to the islands. A carotid ultrasound reveals much, it is an inexpensive and simple, non invasive procedure that will take less than half an hour. There is no down side to having one if a patient wants it.

Our ENT sent Barry for a carotid US before he started treatment and before he even went up to Hopkins. She was concerned that one of the affected nodes was very close to the artery and might be occluding it some (it was).

As Brian says, this shouldn't be an issue -- it is SOP for our ENT, in any case.

As to neck dissection after chemoradiation, it is often not done at MD Anderson (or at Sloan, and increasingly less so at Hopkins) unless considered absolutely necessary, so she may want to consult with Anderson before making any decision to postpone further treatment. They can give her a hand's-on consult and then, if they recommend surgery, it is pretty certain that she needs it.

Gail

Tami, I don't think the rAd oncologist anticipated it would be this long as this is on the long side in general. But the ENT says it can just take a while to heal and that this is not anythuing to worry about, he can see the spots that are irritated and causing the pain, they are not new cancer, and I just have to be patient wiating for them to heal.

I did manage to have 5 spoonfuls of ice cream last night before the pain swallowing it made it no fun anymore. If I could just get this one spot in my upper throat and the back corner of my mouth to heal..I don't know why they are taking so long. Ironically, they re on the right side of my mouth, my cancer was on the left side--the left side feels fine when I try to eat--although still numb in parts!

Nelie,
your chemo finished a couple of weeks after mine. I too am still having problems with my tongue and throat. Some days are better than others but today I am really having a problem. I do not know if it has to do that I was outside walking a lot today and not being able to rest as usual or not.

My tongue is sore... I get this coating on it that I really do not know what it is and it just hurts. And then when I swallow even just water it hurts the back of my throat. I am even considering using my peg for a couple of days so I do not have to swallow no more than I have to.

I do not want to discourage you but to let you know that you are not alone. When I ask my ENT about this he just tells me that I am still healing from the radiation and it will just take time. I hope so. I want to eat regular food so bad.

Plus with my neck being swollen from the neck dissection hurts for me to open and close my mouth to chew anything. I hope that we both will be able to eat real soon and our mouths and throats get better!!

Take care
Love
Terry