Nov 19, 2013 - 7:38 am
I haven't been on here much lately so I'll give a brief history. I am the caregiver for my husband, now age 52.
July 2011 - He was first diagnosed with stage II throat cancer of the epiglottis. Went through the normal 6 weeks of radiation and 3 rounds of cisplatin. Follow up PET scans showed cancer free.
Dec 2011 - A spot on his lung that the doctors were watching started to increase in size.
Feb 2012 - Lobectomy, removal of his middle and lower right lung. Kidney function shut down due to prior chemo treatments. He was in the hospital for about 3 weeks.
April 2012 - 6 weeks of radiation to chest. We declined chemo at this time because he was still so weak from the surgery.
Dec 2012 - A few small spots (too small to biopsy) appeared at the surgery site.
Jan to May 2013 - Additional chemo (carbo, avastin and alimpta) every 3 weeks. Made it through 5 rounds and his blood counts were so low they couldn't give him any more. Received one treatment of avastin alone as "maintence chemo". Shortly after starting the chemo is January of 2013 he started experiencing throat pain. His doctors just prescribed pain meds. Nothing extreme was found by the ENT during an office scope. It seemed to be radiation recall because the outside of his neck was also getting red.
July 2013 - After severe neck pain, his ENT did a biopsy and saw that he had a lot of dead tissue and also an abscess in his throat. The abscess was causing a lot of food to stick in his throat. He was put on a liquid diet and sent for swallow classes. The ENT did suggest a trach may be necessary.
Sept 2013 - Almost overnight he was extremely fatigued, actually hardly able to walk. Bringing up tons of mucus. Went to the ER and found that the abscess that was in his throat actually broke through this larynx into the front of his throat. He was also aspirating the liquid diet. In the hospital for 20 days with MRSA blood infection (from the abscess) and aspiration pneumonia.
Nov 2013 - At home recovering, G-tube placed in hospital. Nothing by mouth and getting stronger. Per ENT, throat and epiglottis are extremely swollen. Scheduled for biopsy and trach on Nov 27th. His heart rate has been extremely high and bp very low. On Saturday, Nov. 16th starts coughing up blood. Lots of blood and huge clots. Back into the hospital via ambulance. ENT doctor performs the biopsy and trach on Sunday. Tells me that it looks like his pharnyx has degraded and is now affecting the cartoid artery. Choices are complete laryngectomy right now (and the doctor said it was risky with his current state) or try to put in a stent to buy us a bit of time to think this through. Opted for the stent and found that it wasn't the carotid but a lesser artery that they could glue. He is doing well now. Heart rate way now, bp normal. Breathing very easily with the trach.
So... this is still only a temporary measure. We must do something soon or run the risk of another bleed that may not stop. He is open to getting a laryngectomy because he is tired of the pain and also not being able to eat so it looks like we will be going down that path very soon. Very concerned just because of the extent of damage in his throat. In the words of his ENT "It's a mess down there" and "Extremely worse that when the last biopsy was done in July".
I just wanted to see if anyone of the site has had a laryngectomy AFTER going through the chemo and rads. Has anyone else had radiation recall or massive throat issues after radiation?
Also, any feedback from all laryngectomies. Any issues eating after? What about the voice prothesis? Totally scared to go down this path but it looks like we have no choice.