Proton Beam, Cisplatin, and Spindle Cells: A Treatment Diary

JAL23

Week 7 “should” be my last

Week 7 “should” be my last full week of rads. Woohoo!

I had an early response PET on Friday and then an MRI on Saturday. Man, do I hate those MRI machines. I guess the trade off is being radioactive versus sitting inside the world’s loudest and claustrophobic dial up modem. I meet with Dr. Lee this Tuesday, and we will go from there if she decides to dose anything more.

The mouth sores are getting a little tough to manage, as the skin from my tongue and gums are starting to peel. Yuck. I’ve also developed a few painful spots on my neck from the rads.

the last chemo was actually the easiest of the three. I’m not sure how that makes sense, but I’m assuming it’s a mix of predictability from the other two along with the fact that I’m just generally miserable from treatment. The worst part about the cisplatin is that it has made the little saliva I have left very viscous and stringy. It creates a fairly unpleasant choking feeling in the back of my throat when coupled with all of the mucous.

I have been watching TV and playing video games - all great distractions that help pass the time. I’ve also found warm baths with Epsom salts are relaxing. Just a matter of finding pleasantness in an otherwise unpleasant situation.

katlou

JAL23 said:

Hi Katlou,

Hi Katlou,

id have to pull out the original path report to tell you the gory details. What I do remember was that it was a 2.8mm depth of invasion (different than the actual tumor size you’ve listed) and was poorly differentiated. i believe depth of invasion is the important predictor for neck spread. With that said, I also don’t want to give any medical advice either - one person‘s cancer might metastasize very differently than another.

I also had a .5mm negative margin, but I was not as worried about that as I was with my neck. In hindsight, I (personally) would have just gotten the neck dissection done electively. If you are worried or concerned, I would highly recommend getting multiple opinions from different cancer centers. You have the luxury of time to decide what to do.

I would highly recommend not using  my single personal experience with tongue cancer as justification for going through a fairly extensive surgery unless professionals are also on board.

thank you

Thank you, JAL23 for the information.  No worries, I would definitely talk to the medical professionals before making any decision on neck dissection.  I just want to see how others in this situation have handled things with their situation and I appreciate your willingness to answer my question.  I have also read that the depth of invasion is the important predictor for neck spread. 

I have decided to have more surgery done with my present doctor which would be a wider excision around the biopsy site. He has said no neck dissection.  Then I may make an appointment at the head and neck cancer clinic at another facility for another opinion about everything else.  They have the only proton beam equipment in the area and I thought it might be a good idea to get my foot in the door at this facility just in case. This is what brought me to your posts to begin with.  My doctor had told me that if I had any perineural invasion that I would require radiation and after reading about it I preferred the idea of proton beam therapy if it comes to that. 

I was happy to read that your chemo was much better this time but sorry to read about your other difficulties.  Hopefully everything will go well from here and you will be able to have this over with soon and be on your way to your health improving and feeling better.  I have you in my thoughts and am routing for you.  Thank you again.

JAL23

katlou said:

thank you

Thank you, JAL23 for the information.  No worries, I would definitely talk to the medical professionals before making any decision on neck dissection.  I just want to see how others in this situation have handled things with their situation and I appreciate your willingness to answer my question.  I have also read that the depth of invasion is the important predictor for neck spread. 

I have decided to have more surgery done with my present doctor which would be a wider excision around the biopsy site. He has said no neck dissection.  Then I may make an appointment at the head and neck cancer clinic at another facility for another opinion about everything else.  They have the only proton beam equipment in the area and I thought it might be a good idea to get my foot in the door at this facility just in case. This is what brought me to your posts to begin with.  My doctor had told me that if I had any perineural invasion that I would require radiation and after reading about it I preferred the idea of proton beam therapy if it comes to that. 

I was happy to read that your chemo was much better this time but sorry to read about your other difficulties.  Hopefully everything will go well from here and you will be able to have this over with soon and be on your way to your health improving and feeling better.  I have you in my thoughts and am routing for you.  Thank you again.

No doubt proton beam was one

No doubt proton beam was one of the best decisions we made. Hopefully it never comes to that, but if it does you’ll be making a good choice. Lot‘s of ongoing research about the benefits of proton beam, and I attribute getting through treatment partially because of those protons. Keep in mind that the proton beam therapy itself is reliant upon skilled oncologists, so not every proton beam facility is set up to do really good head and neck treatment plans. We ran into that issue here in NJ and was one of the reasons we went with MSK.

if you can, get to one of the big cancer centers - MSK, Penn, MD Anderson. You’ll get the very best second opinions around. You really do get one shot to truly nip this in the bud, so you might as well get those opinions rather than relying on one doc or one team. That’s the advice I’d give myself if I could go back in time.

katlou

JAL23 said:

No doubt proton beam was one

No doubt proton beam was one of the best decisions we made. Hopefully it never comes to that, but if it does you’ll be making a good choice. Lot‘s of ongoing research about the benefits of proton beam, and I attribute getting through treatment partially because of those protons. Keep in mind that the proton beam therapy itself is reliant upon skilled oncologists, so not every proton beam facility is set up to do really good head and neck treatment plans. We ran into that issue here in NJ and was one of the reasons we went with MSK.

if you can, get to one of the big cancer centers - MSK, Penn, MD Anderson. You’ll get the very best second opinions around. You really do get one shot to truly nip this in the bud, so you might as well get those opinions rather than relying on one doc or one team. That’s the advice I’d give myself if I could go back in time.

Thank you for the great

Thank you for the great advice.  Unfortunately the only facility near us that does proton beam isn't a major cancer center like the ones you mentioned but it is a hospital with a very good reputation and has a head and neck cancer clinic run by a doctor also with a very good reputation.  This hospital also does treat a variety of cancers.  They have only had proton beam since I think last summer so what you bring up is a good point and something that I have thought about.  I am not to that point and am just getting a jump start on things just in case but I will definitely be keeping your advice in mind.

JAL23

Exactly what I wanted to hear

Exactly what I wanted to hear. Early response PET and MRI shows no evidence of disease or recurrence! Tomorrow is my last treatment day and then it’s off to recovery!

katlou

JAL23 said:

Exactly what I wanted to hear

Exactly what I wanted to hear. Early response PET and MRI shows no evidence of disease or recurrence! Tomorrow is my last treatment day and then it’s off to recovery!

I am so happy for you!  I

I am so happy for you!  I hope your recovery goes very well.

Pclark21st

We are just beginning

My bf was just diagnosed with HPV positive tonsil/throat cancer and the tmor is so large that he had to have an emergency trach to breaath and a gtube to eat as he couldn't swallow.  We have completed week on with 1st chemo and 1st week of 8 radiation.  I am so worried about the side effects he will have around the trach and in the mouth and the fact he isn't swallowing, I am afraid he will ose the ability forever...same as his voice.  He has a Passy Muir valve helping him to speak, but  I know he will lose his voice from treatment, just hope its not forever.  Week one chemo seemed to be OK, the rad causes his neck to swell on the outside which in turns causes discomfort wround the trach.  He canot sleep now I can't imagine how he will be able to if he gets the redface and blistering skin.  Glad to see you are on your last week.  I cannot wait for us to be the same.  I think I might start a blog as well for anyone who might be in his same situation as I cannot find anything that speaks to his specific issues.  Good luck and I hope to see your recovery is speedy and a full success.

katlou

How are you doing?

It has been a little while since we have heard from you.  I have been concerned about you and wanted to find out how you are doing since your last treatment.  Also, any news on your kidneys?  I know you were concerned about your kidneys after having your last chemo.  I hope you are feeling better every day.