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Starting Radiation Tuesday

mdug412's picture
mdug412
Posts: 11
Joined: Sep 2013

Hello,  I have been reading the discussion boards for a couple months now but haven't posted anything.    I can tell from the posts that is a very informative and welcoming community.   My husband was diagnosed with HPV Positive throat cancer to the left and ride side of his tongue at the base and lymph node involvement on both sides of his neck on 7/28/13.   They staged his cancer at Stage IV due to lymph node involvement.  It was decided not to have surgerg but two rounds of Chemo of Taxotere/Cisplatin/5FU with the possibility of a third round.   After chemo, he would have 35 rounds of radiation.

His last round of chemo was on 9/16 and he is feeling pretty good right now.   He had a PET scan at the end of September and the tumors were between 30% - 60% smaller (different sides reacted differently to the chemo.)   His oncologist decided not to move forward with the 3rd round because he ended up in the hospital for 5 days after the first round with a fever and after the second round he was diagnosed with a bacterial lung infection.   His Dr. decided that the side effects of the chemo were not worth the third round.   He starts radiation on Tuesday, 10/28  and will also be getting a weekly chemo of Erbitux for the seven weeks.    We are both prepared that the radiation will be more difficult than the chemo.  

I have read many of the discussion boards and also the advice on the Superthread.  Any advice especially to me as the caregiver would be greatly appreciated.   I think my husband and I are both anxious to get the treatment started.  He does Magic Mouthwash and Mugard both, does he need to take that prior to the radiation treatments start as a precaution and also any info about creams for his neck. 

Thanks in advance for your support,

Missy

cureitall66's picture
cureitall66
Posts: 837
Joined: Aug 2012

Hi Missy,

Sorry you had to search for this cancer....but, glad you found this board. You're right, you found some really good people that are very informative and helpful. My loved one also had HPV-BOT cancer with 2 lymph nodes involved. He finished his treatment last November 2012. Here we are almost 1 year later....and what a difference! Life has gotten so much easier as time goes on.

One thing I can recommend is to be sure he SWALLOWS regularly! He must keep this up, whether he wants to or not. If you don't use those muscles, you could lose it. So, as difficult as it may seem, encourage him to do this regularly. Also, you mention the neck cream, we were prescribed Silver Sulfadiazine cream. We used that once the skin got more red to avoid the extra peeling that can occur. Prior to that we used some Aloe Vera Gel (without alcohol in it-available at Walmart). This Gel kept his skin real soft, kept the skin from feeling irritated. But make sure he does wash it off gently before each treatment...he can't have this on during treatment. I would also recommend to stock up on some Boost or Ensure as they are packed with nutrients and proteins that will be needed during treatment as he may not feel much up to eating and it's possible he could get a feeding tube placed beforehand. We opted to go without it prior to treatment and really wished we would have gotten it put in beforehand...he lost considerable weight and had to get it put in rather quickly during treatment.

For now, this is all I can think of. Others will chime in anytime and offer some suggestions. Be sure to check in with any questions you may have as you go along. There will be plenty of us around to help answer.

Your husband will do fine....it will get tough for awhile, but know that it will get better. Keep encouraging him during the treatment that he doesn't have that much longer to go....it really beats the alternative!

 

Best Wishes,

~C

jim and i's picture
jim and i
Posts: 1561
Joined: May 2011

I am a caretaker too. My husband is almost two years from treatment for stage four BOT with two lymph nodes involved. He could not take the third Chemo either and did some Erbitux as well. He had 35 rounds of radiation. Food tasted really bad from the beginning for him. His radiation doctor insisted he get the feeding tube before treatment and I am glad he did. My husband lost a lot of weight even with the feeding tube. Be sure you urge him to stay hydrated and continue to swallow because the swallow muscles will not come back if you do not use them. Magic Mouthwash helped with the pain and the backing soda and salt water rinses kept the phlem down. If people offer to help, let them. We are bad at trying to do it alone but we also need to take care of the caretaker. It is hard to go it alone and this site was a life saver for me. Anytime I need advice, opinions or a shoulder to cry on someone was always there to encourage and offer help. PM me if you want to talk more.

Debbie

Sunshine60
Posts: 73
Joined: Apr 2013

Hi Missy!

Sorry you had to find us but glad you did. I was my husbands caretaker also- SCC, one lymph node ( 4.3cm, quite large ) unknown primary, stage 3, Negative HPV- went through a 2 surgeries- one for the tumor, the 2nd one was to take out tonsils. no chemo but 35 rads.  I think the best advice I can give you is to literally do one day at a time!   We did mark off each radiation tx, and that seemed to help- but other than that we pushed through as best as we could.  When he got burns on his neck we also used silvadene cream and that worked well for him.  His last tx was in July But he is now scoped every 3 months.

I came to this site everyday- sometimes multiple times a day.  While I didn't post often, this site consoled me and gave me hope   This is a terrible experience for anyone- but it is doable-- something you will read often here.  No question is stupid and most likely has been asked before, so don't be afraid to ask!  We were all brought together under the same circumstances so we get it.  even though I was not the one with cancer, I became very anxious myself. Just know this is normal too.  This is quite a ride but I know you both will do great!

 My thoughts and prayers go out to you and your husband :)

Best wishes!

 

 

 

Charles77066's picture
Charles77066
Posts: 12
Joined: Aug 2012

This sounds like the same treatment that I went through. The baking soda was a good suggestion. I would recommend a feeding tube. Your going to need different mouth wash for dry mouth.

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

Nice to meet you, sorry we had to meet here...

I'm a caregiver as well. I don't have a whole lot of info, as we are not even to the 'half way' mark yet with rads. I guess the only observation that I can offer to you, having gone through twelve rads to date, is that when it gets hard, it gets hard really fast. My husband hasn't given up going to work full time yet, but I can really see a difference in him in just the past few days (and at this point, I may go so far as to say hour to hour...) I can tell that it takes everything he has to get up and go to work, and I feel like this might be the last week for a while that he is actually able to work full time... energy is really lacking, throat hurts, grumpy (completely understood!!) etc.

More than anything, just wanted to say that I'm here to commiserate with you if you need a friend. I think one of the best things that we can do as the caregivers is to try to talk, relax, and take care of ourselves at the same time as trying so hard to take care of the one we love...

Jamie

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

decided to tell your husband's story...

I wasn't a caretaker, so I'll leave that up to those who have been.  As to your questions about Mugard and MM....yes...he's going to want to continue the Mugard while he's in radiation.  I don't know how well it worked for him using it while getting 5FU (it didn't work for me on that part of treatment)...but it worked REALLY well during rads....I didn't have any mouth sores and it stopped the first one that tried to get going....I'm glad to hear that your hubby managed to get it.

As for MM....it goes part and parcel....hand in hand with treatment....he'll probably end up still having some when he's all finished.  Like others have said, keep that swallower going....take something by mouth everyday, be it Ensure, milk....water.....something everyday, doesn't have to be a lot if he's having a lot of pain.  The bottom lines for treatment are nutrition and hydration.....can't say enough about both being so so important.

Now that you've visibly joined up, I hope you feel free to ask any questions you have while he's going through rads.

p

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Cool Hi Missy..... I too am a 'caretaker' for my husband who was diagnosed with tonsilar cancer, with one lymph node involved on the left; HPV+ P16, stage IV.  After a tonsillectomy, Ruben went through 35 radiation treatments with concurrent chemo, 3 rounds of Cisplatin. He was treated at the VA in Long Beach, CA. I am an oncology nurse, so I left my job to be with him during all of his treatments and hospitalizations. I am thankful for the treatment he received at the VA, but was concerned for good cause, as the 'doctors' there are all medical students. 6 weeks post treatment PET scan revealed No Evidence of Disease (NED), praise God. He is now 4 months post treatment. And yes... there is light at the end of the tunnel.

I used some of my 'unconventional' remedies to help with the side effects of treatment, such as Miracle Foot Cream and Noxema to his neck after radiation treatments. He NEVER had a radiation burn, not a blister or otherwise; although the treated area was sensitive to the touch. The Noxema (which has the same texture as Silvadene, used on burn patients) was a huge relief for the sensitivity. The Miracle Foot Cream has a lot of Aloe Vera in it, and it kept his neck supple. I've heard a lot about 'leather neck', but Ruben's skin is as soft as a babies hiney.

My advice as a caregiver is: BE PATIENT.  Your patience will be tested as he goes through each phase of treatment and subsequent side effects. And there will be side effects. Most will be temporary, uncomfortable and a PIA (pain in the a$$), but for the most part, should subside after a short period of time.

Best Wishes and God speed!

Jude

CivilMatt's picture
CivilMatt
Posts: 2808
Joined: May 2012

Missy,

Welcome to the H&N forum (the place to be).

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  3 seconds to type, 4 months to jump all the hurdles.

Since rads start next week, does he have his music?  I played 60’s & 70’s rock.  I use to take a hit of magic mouth wash (swish and swallow, always) while in the parking lot just before rads.  I also went through around 6 bottles of the stuff (those were special days).

My caregiver (wife) had it somewhat easier with me , since I needed to take one Lorazapam daily to wear my mask, hence I slept a lot in the afternoons.  Don’t get me wrong, I made up for the awake times with sounds you will simply get use to (coughing, choking, spitting, dry heaves, etc.).  Even on our best behavior the side effects take their toll to some degree, but it is DOABLE for BOTH of you, honest.

As said, swallow and stay well hydrated.  That was the number one thing I learned from H&N veterans.

Advice to caregiver, hmmm, look to the future because you are leaving this all in the past.

Really, make time for  yourself, accept help, prepare yourself for sounds which are disturbing but necessary, encourage him to help himself when he is able, a brief walk outside, some fresh air and keep your team and especially nurses up to speed on all changes and side effects (they are a mountain of help)

Matt

yensid683
Posts: 222
Joined: Apr 2012

Echoing my fellows, welcome to the best site that no one really ever wanted to be part of.

Caregivers have it much harder than the patients, or at least so I believe.  I was BOT, stage IVa, primary on the left base, extending into the left orapharyngeal wall and left cervical nodes (largest was 6cm), I had one round of induction and found that the cisplatin did kidney damage and that moved me to the rads and the erbitux (much easier side effects that the cisplatin et. al.)

My wife was my caregiver, but also was a wreck most of the time, she felt she was going to lose me at any minute and I saw myself as getting better.  The difference in philosophies became an issue, most of all because she never talked to me about what she was feeling.  She didn't want to add to my 'burden', but in keeping her feelings bottled up, it only added to her stress and our relationship suffered because of it.  During the height of treatments and recovery, she was more of a drill sergeant than a supportive caregiver.  Resentment built between the two of us, she was relentless in that I keep swallowing, but for some reason never saw me drinking water, eating jello or even working my throat muscles. 

Be there for you husband, but talk to him as well, discuss his and YOUR feelings with each other.  My wife wanted to do everything for me, the care at times was great, but at the same time became smothering.  I knew that I could do many things for myself but she wouldn't allow it.  I resented the feeling of losing my independence. 

He will have issues coming, like many have posted, a feeding tube is a great idea, the sore throat that will develop makes eating very difficult, not to mention the dry mouth and loss of taste.  I was constantly amazed at how vile food felt when it had no taste, even though they were some of my favorite things. 

Skin care is important, aloe after (AFTER) treatments helps the skin stay smooth and soft, Aquaphor in the later stages (again AFTER treatment) kept my neck from being scarred.  Make sure the neck (from ears to collar bone) is clean and dry BEFORE every treatment. 

Having something to divert his attention in the IMRT machine is important too, music to listen to, some mental gymnastics help too.  I used to do the math in terms of how many treatments complete, how many remained, the percentages as well as applying it to the time for each 'zap'.  okay, I'm a techy and get into engineering and accounting.  Still, it passed the time very quickly and kept me from going squirrely while confined under that mask. 

Above all, keep communicating, don't be afraid to share your fears with him, I wish my wife had.  I knew what she was going through but she wouldn't open up to me.

BTW, diagnosed in March of 12, rads ended July 5. I was back to work in early September, and today I'm NED, able to do just about anything, eat anything.  My only lingering issue is that the skin on my face and neck (ears to collar bone) is very sensitive to the sun and I will burn without the high SPF sunblock and a wide brimmed hat. 

All the best to you and your husband, prayers and thoughts headed your way

 

Peter

mdug412's picture
mdug412
Posts: 11
Joined: Sep 2013

Thank you for all the very helpful information - the start of his radiation was delayed one day so today was officially his first day.   We are looking at this as one down, 34 to go!

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