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#148575 - 04/20/12 05:59 PM Post radical toncillectomy
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Well, my week post radical tonsilectomy was uneventful. Cold drinks, frozen stuff like smoothies were ok. Superblender makes great soups. Some things got caught on wounds and Hurt! Back to ice water. However, just like the text book tells the doctor, on/about day 6, the scabs on the rescission are going to want to come off. You know how it goes, scab comes off, more healing occurs. Well didn't know scabs would be life-threatening. Started out at bedtime, felt something strange in back of throat. As if I could detect strange from normal, but what was weird. Thought I had spit or mucus in throat. Spit up and Whoa! Blood! Spitting up was. Very painful, so swallowing was easier. Began to swallow, a great deal. Thought it would stop. After about an hour and a half, thought it did, them Here It Comes!! Belly did not like all that blood. I really had no idea I was swallowing much blood.

We rushed to ER. Doctor release notes were if you start bleeding or vomiting blood, go to ER.

Anyway, I vomited coagulated blood. About two of those vomit bags full (2000ml??).

ER at Potomac was great. They did all they could. Gave me nausea drugs and TLC-Thanks!

Bleeding slowed over time and stopped after about 4-5 hours. Not sure when it stopped. Hard to tell I was bleeding since it goes right down the throat from the tonsil incision point.

Threw up a lot of chunky coagulated blood. Not sure when it formed the clots but they were big. This was completely unexpected to me and quite an experience. I don't want to gross anyone out, I want to warn you this may come if your incisions bleed. My BP (that's blood pressure, not Baden Powell for you Scouters) was quite low and my hemoglobins were also, very very low.

I lost a lot of blood. My doc ordered a transfusion and I took two pints over about a 10 hour period. Goes in much slower than saline. He said if my hemoglobins don't go up we need surgery to repair bleeders.

I was very weak. And I could not eat ot drink! I tried to rest.

My BP and hemoglobins went up. Not a lot, but I was discharged 48 hours later. I went home rested. The next day I had a follow-up with Doc. All looked ok. No bleeding, etc. Next appointment is five days with DO.
Thursday, time to rest.

Overnight Thursday, I had the worst pain ever in my tongue!! Dear wife got me some ice chips and at 0230 I am sucking on ice. I dozed off...and about 0430, I woke up to a familiar feeling: I was bleeding from my tonsil rescission wounds, again.

I did not hesitate this time and we rushed to ER. We got there in less the 10 minutes (only time there is no traffic in the DC/Northern Virginia area).

Met new great staff at Potomac ER wink who took great care of me. Anti-nausa meds worked better, bleeding slowed faster, and I was going to the OR.

Surgery was flawless, post-op was pleasant (Thanks!!) and today I am recovering.

I did not lose as much blood which is a good thing.

I hope I don't have to experience this again, at least for a few weeks so I can produce more blood, get rehydrated.

Recommend, like out other dear friends have, drink at least a cup/ 8 oz an hour or 48-64-144 oz's a day. It will help when you need it like I did.

P.S

During first bleed-out, doc got prelim results of PET taken and looks like there may be some more SCC in the L lymph nods, and may be a little more on the right side. Doc says some could be from post-tonsil rescission after effects. I got the PET 2 days after surgery.

So, next week get to meet the team at Walter Reed Bethesda National Navy medical center who are going to help me fight this cancer. Wish me luck!!
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

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#148576 - 04/20/12 06:07 PM Re: Post radical toncillectomy [Re: KenEggman]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 873
Loc: Ohio
Good heavens, Ken - glad you are still with us - that was WAY too much drama.

Good luck and best wishes for a fabulous team at Walter Reed!
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#148577 - 04/20/12 06:30 PM Re: Post radical toncillectomy [Re: Maria]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8410
Loc: PA
Ken, I am so sorry to hear all that you have gone thru! Bleeding can be a very scary thing. When blood mixes with saliva or stomach juices it appears to be so much more than it really is. Im sure it was a horribly terrifying experience. Its good that this has been surgically corrected. I sure hope you have a quick painless recovery! Sorry to hear the PET lit up. It is possible it is a false positive. Too often PETs are done when there is an infection or inflammation and they will make it appear to be a problem when it really isnt. Best of luck with further testing! Keep us posted, we are pulling for you.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148580 - 04/20/12 08:11 PM Re: Post radical toncillectomy [Re: Maria]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
WOW Ken. I was going to say you could write a book, but I think you already did. What a terrible experience. One thing, for sure, is you sure have a good attitude, and that is a plus for all you've been through. Hopefully, the plan of action at Walter Reed will be a breeze from what you've already been through and will rid you of the leftovers. I will say a prayer, in fact I'm saying it right now, for a full recovery for you. Let us know what the "plan of action" is and how you're doing. Dang, tonsillectomies hurt even without all the other frills added to it - but you'll do good, I know.
Another tonsil/node cancer victim,
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#148581 - 04/20/12 08:28 PM Re: Post radical toncillectomy [Re: julieann]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
Hi again Ken:
I re-read your post, and remembered that you can have false positives that soon after surgery, so you may not even have more cancer. I have had something like that show up on MRIs, which turned out to be enhancements from the dye used, and I know others on the Forum have had false positives on their PET scans. Hopefully, yours is a false positive. Please let us know when you find out.
julieann
_________________________
Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

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#148598 - 04/21/12 02:49 AM Re: Post radical toncillectomy [Re: julieann]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4914
Loc: Toronto canada
Hi - hope you recover quickly at this point with no more drama!l, smile that said if you had mets in your nodes prior to surgery I'm surprised they didn't do a neck dissection too. If they did that definitely would explain any potential false positives, if not hopefully the rads and chemo will cook it... smile good luck next week!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#148604 - 04/21/12 02:03 PM Re: Post radical toncillectomy [Re: Cheryld]
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Thanks for all your support. Its Saturay and I had my biggest meal yet. Ensure, cream soup, vanilla silk soy milk (mmm good), green tea and 2 prune juices. I am going to use the power of positive thinking with better nutrition to fight cancer. Searching for good reads and loking for suggestions. My big sis Roxy who I love so much suggested some books by Dr. Amen. I also found a couple Lance Armstrong books. Anyone have a suggestion? Im all ears.

Thank you all again!

Ken
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

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