Introduction - Starting Chemo and Radiation

Remington25
Remington25 Member Posts: 93 Member
in Head and Neck Cancer #1

Recently found this site after searching endlessly for blogs and personal testimonials.  I wish I would have discovers this earlier.

I was diagnosed with SCC HPV16+ in October.  On November 18th, I had surgery where they removed my right tonsil, a sliver of my tongue, part of my soft palate and did a reconstruction along with removing the primary tumor along with 17 lymph nodes. 2 of the lymph nodes had cancer and my margins came back clean.  Recovery From surgery was terrible.  I couldn't sleep because I was in so much pain and so swollen that I would choke. I have regained most of my jaw range of motion but it really is right moving my head to the left and even more if I look up and turn left.

I begin a trial for de-escalated form of chemo and radiation this coming Monday. My treatment is 2 weeks.  I am having a lower dose of cisplatin chemo each Monday and 2 radiation treatments each day (Monday-Friday).  I will get 36gy of radiation during the 2 weeks.

My radiologist says he has only had 1 person out of 80 need a feeding tube but I will likely lose 20lbs during treatment and the weeks following.  I will probably lose my facial hair permaneny (I generally keep a short stubble beard), and my neck will burn and taste buds will be gone for a while.  My 2 weeks are more intense than the standard 33-35 treatment plans but over all I'm getting a little more than half the total radiation from what I have learned.

If anyone has gone through a de-escalated version I'dlove to hear of your experiences.  I'm obviously nervous.  The 5 nights in the hospital and the 8-10 days following were awful. im hoping radiation is better or not worse because I don't know how I will get through it. 

Thanks for reading!

 

Comments

  • ERomanO
    ERomanO Member Posts: 317 Member
    #2
    Welcome, Remington25!

    As we like to say, this is the club that no one wants to be a member of, but now that you're an official member, we're glad you're here.  I didn't find this site until a few months after finishing treatments, but I wish I had found it sooner.

    I did not have surgery and my treatments (chemo and radiation) weren't exactly mild (de-escalated).  However, I remember my radiology oncologist showing me the radiation path and the only place that got the full force o the radiation was right at the tumor... maybe the 2 affected lymph nodes as well.  As soon as it moved to the area immediately outside the tumor the intensity dropped by a signifcant amount.  The 2 main affected lymph nodes were on my right side, but even some lymph nodes on the left were radiated, but with very low doses.

    It sounds like you've already gone through the worst of it (surgery).  If the chemo and radiation are lower dosages than what is normal you'll get through it alright.  There will be challenges, for sure, but just take it one day at a time and make adjustments as you go.  The main thing you have to be concerned with is getting enough calories in prior to and diring radiation and chemo.  

    All the best to you, and please keep us posted on your progress.

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    #3

    I would like to welcome you to the H & N forum. The place nobody wanted to be a member but here we are helping each other. I would also like to wish you a Merry Christmas and a good New year. I have not gone through a treatment like yours but sorry you had so much pain and a difficult 5 nights in the hospital and the difficult 8-10 days following thereafter. It sounds like your radiologist and your team have laid out your treatment and the scenario pretty well it all looks accurate to me. Your jaw range movement and neck movement will probably get better over time the key is doing regular exercises and movement which your team can set you up with a therapist to show you the best exercises for your condition. Everything your radiologist told you seems accurate except eventually, your beard will come back. Mine did but I have areas that don't grow well so I mostly shave anymore. People vary though so your beard may come back completely though. But if not it is a small thing to getting rid of the life-threatening cancer situation. Here is wishing you the best during treatment and please come by the forum and keep us updated on your situation. And finally, check out the Superthread at the top of the Head & Neck page here, it is loaded with  info and some of it may be helpful to you-Take care-God Bless-Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited December 2020 #4
    I Forgot To Mention

    As you say the doc said you will probably lose weight as your taste will be poor things will have no flavor and it may be hard eating for other reasons also such as how close the rads are to your swallowing area etc. If you do not have extra weight to lose on you now got ahead and eat all the good stuff you want now and lots of it to put on extra pounds in preparation for it. I know you don't have much time till treatment starts but do what you can till you can't as you  will probably be ok till 2 or 3 weeks into treatment.-Take care-God Bless-Russ

  • Remington25
    Remington25 Member Posts: 93 Member
    edited December 2020 #5
    wbcgaruss said:

    I Forgot To Mention

    As you say the doc said you will probably lose weight as your taste will be poor things will have no flavor and it may be hard eating for other reasons also such as how close the rads are to your swallowing area etc. If you do not have extra weight to lose on you now got ahead and eat all the good stuff you want now and lots of it to put on extra pounds in preparation for it. I know you don't have much time till treatment starts but do what you can till you can't as you  will probably be ok till 2 or 3 weeks into treatment.-Take care-God Bless-Russ

    I have actually been eating a

    I have actually been eating a lot for the last 3 weeks And have gained 5-7lbs easily.  Treatment starts Monday morning....

  • Remington25
    Remington25 Member Posts: 93 Member
    edited December 2020 #6
    Docetoxl not Cisplatin

    My oncologist and radiologist recommended I have docetoxl ve cisplatin chemo. They feel the life long side affects will be less but more in the temporary range (hair thinning mainly).  Today was my first day of chemo and 2 radiation treatments . Chemo was compleated 6 1/2 hours ago And I don't feel any nausea at this time. Hopefully that means I'm in the clear.  

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #7

    I'm not a Doctor - but the fact that your treatment is only 2 weeks, and the fact that your Oncologist didn't think a feeding tube was necessary, seems to indicate that you must have caught this very early!

    I remember getting my tonsils removed, as standard procedure - and that being possibly the most painful part of my whole treatment experience!... LOL

    A lot of people (including myself) get 5 - 7 weeks of treatment, and a feeding tube is highly recommended! I got a feeding tube .. never used it - but I did lose up to 45 pounds at one time (I have gained 20-25 back .. and actually feel better about my weight, now!)...

    If I remember correctly, I got 35 radiation sessions with chemo. I have a beard (as you can see in the picture). I have a couple small spots on either side of my chin that are bare - but my girlfriend tells me it's not noticeable! I also lost my brown/blondish hair - but it came back .... just a little darker. It seemed like the new hair overlapped the old hair - so I was never "bald" ... just "thinner" for a while. I don't see any difference now, in thickness - from where I started!

    Take good care of yourself, and keep your spirits up. I suspect this will certainly be challenging for you, as it is for all of us - but you WILL get through it.

    I wish you the best possible outcome!

    mg

  • Remington25
    Remington25 Member Posts: 93 Member
    edited December 2020 #8
    Thank you MG.  I am happy to

    Thank you MG.  I am happy to hear about your beard, hair and that you were able to make it without using the tube.  I know it will be long and difficult but I hope I come out nearly normal on the other side.....

    Today I just finished day 3 which means I've had 1 chemo and 6 radiation treatments so far. My taste has basically left me as if this afternoon already.  i was hoping it would last a little longer but I'm not in pain yet so hopefully that stays away a little longer.  I'll keep updating in case others get a similar treatment plan so they know what to expect.  

  • PipLily
    PipLily Member Posts: 127 Member
    #9
    Remington25 said:

    Thank you MG.  I am happy to

    Thank you MG.  I am happy to hear about your beard, hair and that you were able to make it without using the tube.  I know it will be long and difficult but I hope I come out nearly normal on the other side.....

    Today I just finished day 3 which means I've had 1 chemo and 6 radiation treatments so far. My taste has basically left me as if this afternoon already.  i was hoping it would last a little longer but I'm not in pain yet so hopefully that stays away a little longer.  I'll keep updating in case others get a similar treatment plan so they know what to expect.  

    Good luck Remington!

    My husband is about 7 months post treatment, and we have laughed and marveled ~ he has always had pretty thin hair. It has grown back in at the base of his neck much thicker, and curly! I love it. He made it through treatment ( surgery , chemo, radiation) without a PEG tube, and is doing fantastic! Hang i there!! Really...you can do this! This forum will be a great help and resource. 

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    edited December 2020 #10
    Remington25 said:

    Thank you MG.  I am happy to

    Thank you MG.  I am happy to hear about your beard, hair and that you were able to make it without using the tube.  I know it will be long and difficult but I hope I come out nearly normal on the other side.....

    Today I just finished day 3 which means I've had 1 chemo and 6 radiation treatments so far. My taste has basically left me as if this afternoon already.  i was hoping it would last a little longer but I'm not in pain yet so hopefully that stays away a little longer.  I'll keep updating in case others get a similar treatment plan so they know what to expect.  

    Losing taste is difficult, and impossible to describe - to someone who hasn't been there.

    All I can tell you is that the journey is challenging - but the destination will make it all worth it.

    Hang tough!

    mg

     

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