Tonsil/throat cancer, HPV positive with trach and gtube going in

Pclark21st

I wanted to start this blog because it seems my bf is in a small group of people who start treatment with a trach and gtube already.  He has been having difficulty swallowing and breathing for a few months.  Even thought he was encouraged to go get it checked out, he was between jobs and had no healt insurance. He was having to pull over driving as he felt lightheaded.  I noticed his voice was very rough and after he had secured health insurance, I finally convinced him to go to the hospital.  He was immediately sent to Emergency Room where they said he needed a trach after determining he had throat cancer from a CT Scan.  The hospital we were at didn't have ent specialsts so they sent us to one in RI.  They agreed and wanted to do emergency trach, but we wanted a 2nd opinion from a Boston cancer hospital.  When we arrived, they agreed and he had a trach installed right away.  The tumor is so large that they said he could be dead in 2 days without intervention.  They diagnosed him with Stage 2/3 but said he was HPV positive so that was in his favor.  They did a swallow test and he aspirated so gtube installed.  After a few days, they changed the trach to a smaller size and his voice came back a little.  

 

The trach has been very difficult for him with the large amount of secretions that need to be suctioned or coughed out.  He gets very little sleep as he needs to keep spitting or suctioning.  He has misted air much of the time and we have a warm air humidifier in the LR, where he has set up camp.  He is very diligent to take in at least four 16 oz bottles of water everyday to try to keep his kidneys from being hurt during treatment.  We jsut had a Passy Muir valve which allows him to take in the air through the trach, but forces it out through the mouth.  This allows him to speak better and to utilize his nose/mouth area for partial breath.  We are afraid the longer he goes without swallowing, the better chance he will lose that ability.  He is beyond nervous that he might end up with a permanent trach.  We want to do whatever we can to keep normal muscles and functions working and not lose any of those abilities.

 

Treatment was determined for 3 hits of Cisplatin and 8 weeks of radiation.  We started Monday 1/22/18.  We've tried a new swallow test to detemine if the smaller trach would allow some liquid, it went down the right tube this time, but tumor still to large for it to go down easily.  He seemed to be OK with the nausea from chemo, but the radiation is causing swelling of the outside of the neck which tightens the trach.  Plus, with the trach he can't lie flat and the mask tightened to the table causes him anxiety because he is coughing so much secretions without good suctioning, notr the ability to move his arms, that he feels like he is going to choke with each radiation treatment.  

 

We are worried about how the treatment is going to affect his skin area around the trach and how to keep him as comfortable as possible.  I've watched other family members travel the journey of their respective cancers, butt is a really hard cancer to watch someone struggle through.  You never realize how many normal bodily functions happen in the neck and head area.  I am grateful to the many friends and family that are offering to help...but it seems like most of this has to happen between the 2 of us.  I will try to offer any insights we find and appreciate any tips from others who might be in this same situation.  They told us it's the worse cancer to have but the best one to heal.  I'm banking on that.

Pclark21st

Ladylacy said:

Treatment

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So sorry to hear about your

So sorry to hear about your husband's final journey.  I hope he didn't suffer much.  Ive read quite a few stories of people losing their battle from 2nd cancer from treatment.  I think ill keep that info to myself right now.  Thank you for sharing your story.  I'm trying to find everything i can to be ready.  

Curlyn

Pclark- you sound so informed

Pclark- you sound so informed, a wonderful rock of support for your man. And you are right, lots don't make it, but today, sooooo many more do. Cancer has almost become a chronic disease if it isn't outright cured. HPV+ gives you a leg up. I am assuming that at Stage 2/3, it is the placement of the tumour that has caused all of the problems, hence trach and gtube to start. He can still do this. Take/seek every support you can- someone to clean house, drop off food (even if just for yourself, a very tired caregiver- if people ask how to help, tell them), speak c the social worker or nurse for support...don't say no to any reasonable help. As for me, they biopsied and waited a year to do anything because bx inconclusive and I was so healthy looking, felt great, regular gym goer. My surgery removed so much of my neck structure, just to keep me alive. But you can barely tell now and I can do just about everything, and now back at gym! Then chemoradiation- I told my husband that I was ready to die. Of course, my family and team wouldn't listen to that talk and I am so glad for that strong unwavering, support. It pulled me through. No matter what the future brings, I am eternally grateful to my caregivers, who dragged me through and made sure that there would be brighter days ahead. You are in position to try to do the same but you might need help. You can do this. Hugs!

Ladylacy

Treatment

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rodny

hpv

Has anyone heard about the new guidlines for HPV tosil cancer? Apparently it is no longer recommended that it be "graded". Moderately or poorly differentiated are henceforth considered irrelevent, and number of nodules no longer to be taken into consideration. It seems that the hpv designation says it all. I also hear that that de-escalation of treatment is being considered for  hpv positive tumors.some clinical tests are wraping up. So, yes hpv is indeed a "step up". I can track down the source of this information, but wonder if others had heard about this evolution in the way the hpv issue is being reviewed. All too late for me as my treatmnt ended 4 yeas ago and all ok. It was a rough ride, however, and this may be good news for future patients.

 

Pclark21st

Curlyn said:

Pclark- you sound so informed

Pclark- you sound so informed, a wonderful rock of support for your man. And you are right, lots don't make it, but today, sooooo many more do. Cancer has almost become a chronic disease if it isn't outright cured. HPV+ gives you a leg up. I am assuming that at Stage 2/3, it is the placement of the tumour that has caused all of the problems, hence trach and gtube to start. He can still do this. Take/seek every support you can- someone to clean house, drop off food (even if just for yourself, a very tired caregiver- if people ask how to help, tell them), speak c the social worker or nurse for support...don't say no to any reasonable help. As for me, they biopsied and waited a year to do anything because bx inconclusive and I was so healthy looking, felt great, regular gym goer. My surgery removed so much of my neck structure, just to keep me alive. But you can barely tell now and I can do just about everything, and now back at gym! Then chemoradiation- I told my husband that I was ready to die. Of course, my family and team wouldn't listen to that talk and I am so glad for that strong unwavering, support. It pulled me through. No matter what the future brings, I am eternally grateful to my caregivers, who dragged me through and made sure that there would be brighter days ahead. You are in position to try to do the same but you might need help. You can do this. Hugs!

Curlyn, thanks for note. 

Curlyn, thanks for note.  Glad you had a goid suppirt group.  I have a group if friends that are taking turns driving him to treatments so i can work.  He is beginning to have discomfort in his jaw although he has been diligent in doing jaw exercises.   The secretions are getting thicker making it more difficult to sleep.  Theyve given him a patch to help but nothing yet.  My biggest fear is the skin side effects and i want to try to stay ahead of that for him...as well as not let him lose the ability to swallow so he can be rid of feeding tube eventually and pray to god he doesnt lose his voice forever.  

Curlyn

Pclark21st said:

Curlyn, thanks for note. 

Curlyn, thanks for note.  Glad you had a goid suppirt group.  I have a group if friends that are taking turns driving him to treatments so i can work.  He is beginning to have discomfort in his jaw although he has been diligent in doing jaw exercises.   The secretions are getting thicker making it more difficult to sleep.  Theyve given him a patch to help but nothing yet.  My biggest fear is the skin side effects and i want to try to stay ahead of that for him...as well as not let him lose the ability to swallow so he can be rid of feeding tube eventually and pray to god he doesnt lose his voice forever.  

Just to add that I did jaw

Just to add that I did jaw exercises until my jaw was too sore to do them properly. But they told me that was okay, to make sure I do them diligently when rx stopped and I was healing. Did them as best that I could without causing pain, and then meticulously once radiation over. I never had thick secretions, mucositis, (a gift but your husband's prob exacerbated by trach) but my neck got sore and started to break down in the last week. I found it easy to manage c saline soaks and silversulfadiazine. I cleaned my teeth and mouth meticulously and 11 wks out I am still using the baking soda/salt rinse recommended by oncology dentist to maintain alkaline environment that prevents cavities and heals tissue/told the only thing that cuts through thick mucous. His voice should come back after trach out but thats a future concern and something a speech pathologist can help you with. I couldn't speak at all c the NG tube, too sore. Also, I resisted pain meds until it was put into perspective for me ie. only a short time, will help you through it. Glad I took them. Everyone was more than willing to find the right combination for me...just keep them informed of how they are working or not. Sorry for this long post but you both need lots of support. Like others, just trying to help you through this c anecdotal experiences, as others helped me.

MikefromWinthrop

rodny said:

hpv

Has anyone heard about the new guidlines for HPV tosil cancer? Apparently it is no longer recommended that it be "graded". Moderately or poorly differentiated are henceforth considered irrelevent, and number of nodules no longer to be taken into consideration. It seems that the hpv designation says it all. I also hear that that de-escalation of treatment is being considered for  hpv positive tumors.some clinical tests are wraping up. So, yes hpv is indeed a "step up". I can track down the source of this information, but wonder if others had heard about this evolution in the way the hpv issue is being reviewed. All too late for me as my treatmnt ended 4 yeas ago and all ok. It was a rough ride, however, and this may be good news for future patients.

 

Yes, I was diagnosed with

Yes, I was diagnosed with stage 4 base of tongue primary with 1 node involved, primary was 1.5 centimeters, my radiologist told me it would now be considered stage 2, however, same treatment, 35 rads and 7 weekly cisplatin, could not do every 3 weeks due to already having tinnitus.

Pclark21st

MikefromWinthrop said:

Yes, I was diagnosed with

Yes, I was diagnosed with stage 4 base of tongue primary with 1 node involved, primary was 1.5 centimeters, my radiologist told me it would now be considered stage 2, however, same treatment, 35 rads and 7 weekly cisplatin, could not do every 3 weeks due to already having tinnitus.

Hi MikefromWinthorp.  Sorry to hear you

Hi Mike.  Sorry to hear you are going through this.  This is a journey noone can really understand unless you are first-hand.  There are so many bodily functions that all begin and end with the ENT area... I took for granted.  I said that my job was to research and learn all I can to be prepared, his job was to fight the battle.  I do bleieve that knowledge is good, but he is one that prefers ot to know.  I have leared very quickly not to look to far foward.  I have heard so many times in life to take one day at a time and although I agreed I never knew wht that actually meant until now.  Hang in there.   It's a tough fight, but the alternative is worse.  Keep me posted on your treatment.  If I find any things that work for us, I will post them here.  

Pclark21st

We are ending week 3 of 8

Been an interesting time.  Fever has spiked a couple of times over the concern level of 100.5...brought him for lots of tests, not sure what's going on but given antobiotics for just in case.  Med list keeps getting longer...trying to be as natural and organic as possible and everything has to be liquid or ground up.  The combo of aloe and calendula cream seems to be staving off skin irritations thus far.  We are trying to apply at least 4-5 times a day.  Doc told him that they are going to hit the stoma area hard, so he will have blistering in that area and probably under the trach collar.   Having to readjust eating to 4 times/day.  His energy level is decreasing.  Seeing food on TV or in person is getting more and more difficult as he hasn't actually eaten since 12/15, so I eat most of my meals outside the home, if possible and if not try to find things I know he won't like anyway.  He says he feels more space in his throat and actually can swallow very small sips of water.  YAY.  Rads are getting easier and less anxious for him.  Getting rescan today so hoping to see tumor shrinking.  2nd chemo on Monday.  TG my mother taught me patience.  I never knew how hard this was going to be.