Tumor #3...God it just needs to end already

55 reads and not a single comment...not a word of encouragement...not a you got this...not a I'll be praying for you.  I've been on this forum since December 2017.  I've read positive comments.  I've left positive comments.  Yet I've noticed when cancer is acting negatively, the support drifts away.  It must be that you all are leary of those posts that appear doomed.  Maybe you dont want to see what some people's truth is.  Well, until I am told he has no more time, we will fight this battle with force and dignity.  I thought of all the people out there that could relate it would be you...

wbcgaruss said:

Please Don't Feel frustrated

Sometimes I think folks read these posts and go away and think about it and it takes awhile to sink in for them to answer. Some folks may be overwhelmed by your story and his fight and suffering they don't know what to say right away or are afraid they may say something wrong. Give the folks a little time I'm sure their heart is with you. It sounds like you are overwhelmed with the whole situation, can you take a slight pause and gather your thoughts. I feel for you very much so and your family also. Anyway, Thomas is certainly getting his share plus of some difficult times. And it is hard for the rest of the family also. Congrats to him for fighting so hard and keeping his swallowing going and hang in there, fight these little cancer B@#$%*ds that invited their friends over and (NEGU) Never Ever Give Up. I am putting you on my prayer list generally and especially for the 15th coming up that his operation is a huge success and the corner is turned towards complete recovery-God Bless-May He Strengthen You

"The LORD is near to the brokenhearted and saves the crushed in spirit. Many are the afflictions of the righteous, but the LORD delivers him out of them all."

Psalm 34:18-19

Philippians 4:6-7 …do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

 Psalms 138:3 On the day I called, you answered me; my strength of soul you increased.

Thank you

okeydokey said:

so very sorry

I am praying for you.I havent been here for awhile.I know what you are going through.My husband is dying now.He has fought such a couregous fight,Hospice is coming in evry day.his cancer has eaten through his jaw.and when he has anything to eat it is comimg through a hole in face.He,believe it or not is still getting out of bed,and coming to the table though he is so weak.He has fallen a couple of times,though luckily hasnt been hurt.He wants to live so bad and I am so devasted by this terrible disease.and feel so bad for him.I hadnt done an update for awhile so I will also post this with my original post.May god bless and comfort you--Hugs

Rita

Rita.  I'm so sorry to hear about your husband.  It's so hard to watch the side effects of the treatment and to see omeone fight so hard.  What a fighter he is and showing dignity to the end.  My thoughts are with you at this part of your journey.  I know how hard it is for you but be strong for them,.  Hugs 

Logan51 said:

Also very sorry

I do wonder where your Hubby is being treated, as it would seem your C team and the Radiology people have not done a good job in detecting where the C is. If it is the same C that has spread- then they failed to ace it, plain and simple. More than likely, though, traces were in the new spots in his chest, and the PET did not show. For tonsil C to spread to chest is very untypical.

As for the responses: your Hubby's C experience is very unlike the typical. H&N to spread to chest within 2 years, and to have to go thru all he has. Know Phrannie has had her's spread to lungs within a couple years, but not many more that I can recall. I'm getting a FT put in next Tuesday due to scar tissue Rad damage, and if he's been zapped in that area twice= would think its inevitable he will be stuck with one for life sometime down the road. Yes, it is a negative slant, but others like the late Hondo have shared all their downside experiences, as I did years ago under a different name. So, it is a good thing to share his experience, because that's what we do to inform others of the post-tx side-effects, etc.

Do wonder, for instance, what type of C the biopsies have shown the chest C are? I had Nasopharyngeal/NPC, which typically first shows in lungs if it comes back. The same C strain as the tonsil? 

Dave, we are at one of the best cancer centers in the US...Dana Farber.  Our MO speciales in H&N and has written papers on this very thing.  Our Rad Oncol is top of his field.  We are very confident in them and I  believe Thomas would be gone by now, or even way worse had we not transferred our care to DF with the 2nd tumor.  That being said, they both have said his case is very unusual.  His HPV +16 tonsil cancer started below his right ear and went to top of his chest.  We were with Beth  Israel, again with good drs, and they showed us how they radiated well below the tumor.  The tumor was treated successfully.  DF believes the 2nd tumor was actually an extension of the original tumor that some cells lie below the extended radiation field and 2 small to detect on post TX PET.  When discovered, they were limited to TX due to placement directly behind breastbone.  They felt since his original tumor reacted so positively to rad and chemo, they went with the same proto...again well below the tumor.  Again, this tumor reacted very positively to TX.  This 3rd one is a result of issues we had with the pleural effusion tube.  All of them have been from the original tonsil.  This surgeon told us that this was a ripe area to grow cancer cells and although the chemo appeared to kill the cells, one very small one slipped out.  It's always the risk.  They hunt for sights they can hide out not be detected until they decide to multiply and grow big enough to be detected.  Thomas keeps swallowing what he can.  Hes using the OraMagic solution he swallows which helps alot.  Med Oncol started career as ENT and keeps a close eye to determine when he might be eligible for stretching.  We are hoping the 3rd tumor was detected soon enough to be surgically removed, give him a chance to recover from everything the past 18 mos.

Thank you for the note.  We chose to keep our journey as open as possible so people outside can understand when a person has cancer and goes through treatment, that's  not the end.  In fact, that's the beginning.