| Joined: Oct 2014 Posts: 3 Member | OP Member Joined: Oct 2014 Posts: 3 | Hi all!
Been dropping by, thought I'd join in.
My story (short version) male, in my late 50's. As a teen I had non-Hodgkins lymphoma, it was aggressively and successfully treated. In my late 30's I started to have some gastrointestinal problems, kind of like irritable bowel syndrome, unpleasant but manageable. Occasionally I'd have bouts of vomiting, about 8 or so times that'd land me in the emergency room, usually 3 -4 days of rehydration and back home.
About a year ago I had a persistent sore throat and was diagnosed with cancer on the left tonsil, not too advanced. Treatment was to be 21 days radiation and 3 hits of chemo. One week into the treatment I was vomiting and couldn't keep down food or liquid. Went to ER. They thought it might be small bowel obstruction and admitted me. A scan showed a possible blood clout in leg, so they gave me a bag of heparin. Turns out what I had was a bleeding stomach ulcer, and the heparin caused me to bleed out and drown on my blood. Was coded and place on life support.
A few weeks later they removed the ventilator and gave me a swallow test, I aspirated on the barium and started to drown again. For some reason they didn't have me on a blood sat monitor so they couldn't tell I was suffocating. Fortunately my wife kept telling them something was wrong, and I was coded and incubated, again.
A few weeks later they went to drain some fluid around a lung, but nicked and collapsed the lung, back on the ventilator. And a g-tube, and a tracheotomy.
After about 2 months I was finally out of ICU for good, but the emergency incubations paralyzed a vocal chord and left me with Dysphagia.
I was moved to an acute care facility to wean me off the trach, deal with the swallow, speech, and general rehab. It took 6 months to get to walk and swallow again.
During most of that time the cancer treatment was on hold, when it did resume after about 6 months they couldn't do the chemo because my body couldn't take it. So 4 weeks of radiation (which included 90 minutes of ambulance daily).
Was finally able to go home about 4 months ago.
Currently having 3 days a week of phys rehab, 1 or 2 days of speech and/or voice rehab, a day or two of jaw therapy to deal with the trismus and a weekly visit to a dentist for light therapy on the radiation burned hole in my soft pallet.
Biggest challenge (beside not getting too depressed) is eating. Although my taste has returned, and the back of the mouth isn't that painful anymore, the tongue has become extremely painful, I eat by nibbling like a rat due to trismus, chewing is a pain, there's lack of saliva, and the swallow is weak so bits of food get caught in the throat. I'm a mess when I eat.
But on the bright side my wife has been a champ throughout the whole ordeal, my last PET scan was clean, and at this point almost everything is slowly improving.
Some things will never get back normal, my voice, jaw opening, saliva and swallow, but the pain should subside some, and hopefully I can eat enough to yank the g-tube at some point, although that might take another year or so. If there's one thing I wish my doctors had told me it would be to get a Therabyte right away. even before radiation started. That may have helped to limit the trismus. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Welcome to OCF. It looks like you have been thru alot. I may have missed it but I saw you mention radiation but didnt see you mention you had been diagnosed with oral cancer. Where was your tumor? When were you treated?
For some patients the therabyte works and for others not so much. I was one that it didnt really help. There is also a Dynasplint which is similar to the therabyte appliance.
Sorry to see you are dealing with being on the feeding tube. Its no fun! I detest mine but for me, its a necessary evil. Are you are to tolerate the ensure or other vitamin type nutritional drinks?
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr 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 xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Oct 2014 Posts: 3 Member | OP Member Joined: Oct 2014 Posts: 3 | "Where was your tumor? When were you treated?" Cancer of left tonsil. I was treated with one does of chemo and 5 hits of radiation last October. Then all the other stuff happened. And I subsequently had 21 additional zaps of radiation in April.
"For some patients the therabyte works and for others not so much."
My trismus hit me about 2 -3 months post radiation. On Friday things seemed okay, but by Monday I couldn't put one finger in my mouth. Truth is it was probably slowly getting worse, I just didn't realize it because I wasn't eating or speaking much.
It's helped, but not a lot. I didn't use it much at first because it aggravated general throat pain. That's subsided a bit, although there's still some tooth pain and a lot of tongue pain. After using it I can easily fit a finger in, but in an hour or so it's smaller already. But I'm going to keep at it, I think overtime it will help, and I'm afraid that if I stop I'll regress.
"Sorry to see you are dealing with being on the feeding tube. " To be honest, it doesn't bother me that much, which I find odd. I think that currently eating is such a pain that the g-tube is a welcome, and necessary, relief. But I do miss eating and hope I can get back to it.
"Are you are to tolerate the ensure or other vitamin type nutritional drinks?"
Presently I'm on Nutren 2.0, 3x a day - 1,500 calories. Our insurance covers it, but I don't know for how long. I was drinking Carnation Instant Breakfast, but for the past few weeks it's intolerable because of the associated tongue pain while drinking it. | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Welcome Yod! Reading your story was like an action packed novel! You sure have been through quite a bit.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Check with The Oley Foundation for your formula and feeding supplies if your insurance cuts you off. Its a patient exchange program fitting needy patients with those who dont need their supplies any monger. All the user pays for is the cost to ship which if I remember correctly is only $16 a case. For some without the best insurance it can be much cheaper than their co=pay is. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr 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 xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome. You have been through so much in the recent past. I hope things smooth out for you. Usually newcomers learn a lot from those here; I think in your case, you are immediately promoted to sergeant and tell others how it goes! Hang in there.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome Yod,
I had a somewhat similar experience as yours after 5 days of induction chemo in 2009. I was hospitalized, and in an acute care facility for 6 months as a result of chemo side effects, 2 months were in ICU, ventilator, paralyzed, over 110lbs lost, etc. I didn't go on do any radiation until over a year later, and like you, I had to learn to walk again. 5 years later, I overcame most the problems, gained back 50 lbs, eating everything by mouth, minus my current teeth and trismus trouble, but am far better than I was back then. I have a smile on my face when I see the hoyer lift, and wheelchair.
Good luck with your continued recovery.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Oct 2014 Posts: 3 Member | OP Member Joined: Oct 2014 Posts: 3 | Thanks for the welcomes and tips! | | | | Joined: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Sep 2013 Posts: 105 | Hello Jod, wow you are working so hard. Cheering for you to keep it up. Its OK and completely understandable that you are feeling down. Keep being open and accepting of all you feel, its the only way to get better.
Sophie
husband 61@diagnosis painter 6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis 17/9/13 Dx(moderately aggressive) 24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube 2/01/14 (30 tx)rads 60gy N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes) Clear margin, close 2mm inner cheek 15/05/14 cellulitis 3/12/14 Chest CT Clear 27/02/15 cellulitis 8/6/15 cellulitis 10/6/15 Osteomyelitis
| | | | Joined: Sep 2014 Posts: 16 Member | Member Joined: Sep 2014 Posts: 16 | Is this common with chemo? Do people often become hospitalized and can't continue cancer TX? Also, Paul, do you feel that the time off from cancer TX due to hospitalization probably caused the cancer to spread? I just wonder what one should do in these situations.
40 y.o., undiagnosed, spitting up blood past 4-5 months at random intervals, several enlarged lymph nodes under chin and neck, biopsy of one showed benign viral lymphadenopathy. Still being monitored by ENT.
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