Wow! Im so sorry to hear about your partner being hospitalized right after finishing rads. I will never forget those horrible few weeks at the end of rads and beginning of the recovery phase... some of the hardest days/nights Ive ever been thru. When you are right there going thru it, suffering or being the caregiver watching the person you love suffer being unable to help them is agony!!! Hearing the condescending "its the side effects everyone goes thru" does nothing to help you to help the patient get thru it easier. Only those who have gone thru it themselves or helped a close family member (someone living in their household) go thru it they can NOT fully understand what it is like at all.
Since your partner is currently in the hospital ask his doc to write an order for the nurses to use the suction machine on him every hour or 2 which should significantly help him clear the excess mucous. When he is sent home, you can also get a portable suction machine by the doc writing a prescription. Make sure you get the prescription for a portable suction machine if he is still experiencing mucous issues when he is discharged. A medical supply company will provide your partner with a portable suction machine and hopefully they will show you both how to use it. I know its horrible but the mucous should be a temporary issue, at least it is for most patients. Then one day or night it seems to just stop all by itself and the next day the mucous issue turns into the "dry mouth phase" which can last for years. Dry mouth isnt as bad as the excessive post rads mucous or what a great many OC patients have... the thick ropey gunky mucous that feels like its impossible to cough up.
During the beginning of the recovery phase most OC survivors feel horrible!!! Around 3 weeks after finishing rads they will notice they're beginning to feel slightly less crappy one day. Thats the point many term as "crawling out of the tunnel". Its a sign the worst is finally behind you now and although its not completely over yet, your partner is on the right track and showing improvements. Recovery can be a long, frustrating time, patients recover at their own pace. Dont be surprised if you see days, maybe even weeks of improvements then out of nowhere you see the patient go backwards with other recovery issues blindsiding him. Set backs can and will happen to almost every person going thru rads for OC. The only thing any of us are able to do is focus on the controllable which is his intake and ensure a minimum of 2500 calories and 48-64 oz water are done every single day no matter what for at the very least the first year after finishing rads. A total recovery takes 2 years so there is a tremendous amount of healing to go thru. Focusing on intake when patients struggle to eat or keep anything down is NOT easy but its necessary to get the patient thru their recovery phase. One issue many go thru is when patients throw up or have diarrhea, everything that comes out must be put back in. Skimping a day here and there is a common issue many in recovery will experience.... BUT!!!! If skimping, thinking they will make it up the next day instead turns into a vicious cycle of playing "catch up" and tomorrow never comes so the patient is unable to take the extra calories in as they thought they would do. I cant stress the importance of a higher intake enough, it is what can make or break patients. From what Ive seen with hundreds of patients who start the "make it up tomorrow" game... in the end they ALL greatly suffer far more than they should. If they had listened and followed the daily bare minimums as directed to do their bad days would be very, very few where they would begin to feel better and have a significantly easier time with their recovery.
Im wishing you all the very best with everything you both are going thru!!! Hoping your partner turns around very soon and gets to go back home. One other very important thing I forgot to mention is your partner is a VERY high risk patient!!! After just completing rads his resistance is nil!!! Im sure the blood work would show he has a severely compromised immune system at this time . Its imperative you need to keep him isolated, far away from people, stores, etc. Frequent hand washing, limited expose to the general public, using hand sanitizer and all the other precautionary advice thats been given on how to avoid contracting the Coronavirus must be followed to keep him safe.
that's possible. He was so glad to not have all the pain in his face which has kept him from sleeping for a couple of months now. But today...it's 9:30 and he hasn't even gotten up to take his dog out yet. I think the tiredness of the chemo and/or Keytruda has kicked in. He went from an 11 in energy on Tuesday and started really slowing down yesterday and seems to be out of it today.
Peggy: Regarding your question of "how long", when first diagnosed with leukoplakia it took several years before it went to cancer (and it was always called, in my case, leukoplakia-I first heard of PVL from you). If your experience is like mine, steady monitoring with any necessary remedial work will keep it under control. My leukoplakia was first diagnosed late in the last century, maybe 1998 and the first cancer was found in 2003. Unlike you, I've never experienced any mouth pain (except after the 2015 operation, of course).
Thanks Christine. It was a rare side effect (only person in the trial) to have this stomach inflammation. Ahh well. I take lanzaprazole which helps with other stomach issues.
Well I've been doing well. My weight has been stable for 2 weeks now. I've not used the feeding tube in neatly a week. I'm mixing foods and ensures (dinner tonight is soup, ensure and ice cream). I'm hoping that a few more weeks of this will mean no more tube. Then, once isolation has lifted, I can go swimming.
I'm keeping safe at home during this awful time. I hope you all are too
Unfortunately theres a great many long term survivors who struggle with a wide variety of late effect issues from their OC treatments. Issues with heart, kidneys, blood pressure, thyroid, poor circulation, osteoradionecrosis, baroreceptor failure (blood pressure regulator), motor neuron disease (ALS), are a few of the more common issues long term survivors notice but theres a great many other ailments doctors attribute to OC and its treatments..
If you had a neck dissection or surgery to check lymph nodes that could be whats behind your lightheadedness and range of motion issues. Almost every person who underwent that kind of surgery has similar issues along with limited motion on the side of the surgery. Biggest noticeable issue is the arm is not able to be raised making getting dressed a daily challenge. Stiffness with limited range of motion are difficult to improve even with doing lots of PT. Ive dealt with this since 2007 and I actually feel pretty lucky to not have much else popping up besides my regular daily challenges.
As far as looks go... everybody gets older and in time will eventually lose their looks. Even the "amazing" older people we see on tv who look decades younger than they are show the effects of aging. Even the best looking people only have their good looks on a temporary basis. I forced myself to believe this while I was stuck in the hospital for my 2 month extended stay after the mandibulectomy with complications caused me to become disfigured. It was NOT easy to face the truth but I went into the hospital one person and came out another. After waking up from 3 weeks of a medically induced coma, I didnt recognize myself but luckily I had weeks before I was well enough to go home and able to tell myself over and over.... looks fade, everybody ages and doesnt look the same as they get older. Im willing to bet, your crooked smile is not even close to what you think it is. We are ALL our own worst enemies and are the hardest on ourselves. Remember everyone is different and has their own quirks.
Best wishes with everything you are currently going thru!!!
This is indeed a very good question! Ive been thinking about all kinds of Coronavirus questions too. If unsure about where you stand when talking about the deadly Coronavirus, you should ask your own doc as this is a very complex and individualized question. Your doc should know or at least have access to your entire medical history, latest lab tests showing blood counts, etc. Plus they have other medical knowledge about you and about Corona.
The Corona pandemic is getting widespread media coverage in the US. It seems to be everywhere.... Ive seen it as part of the daily news, special reports from the government, regular commercials, plus excessive public service Corona info commercials (every channel, 24/7), online news, even nationwide postcards. With such an onslaught of info given its easy to come across misinformation. The best resource is the CDC. At the bottom of this post, Ive included a link to the CDCs website. There you can find everything you ever wanted to know about the Corona pandemic coming from a reputable source. Theres in depth info regarding who is at a higher risk of contracting Corona. In my area while watching tv, it isnt possible to watch adult tv channels more than 15 minutes without seeing the ads during every commercial break.
OC patient/survivors need to understand during the often brutal treatments or after having cancer, it leaves us with a weakened immune system. This is one of the factors mentioned in what makes someone high risk. If an OC patient/survivor has chemo that further complicates matters making a full recovery take even longer. It takes 2 years of recovery until OC patients/survivors are considered fully recovered. Even at 25, 26 months post rads, some patients have reported having small improvements in their sense of taste and saliva production. After rads, many of us find its taking forever to have our white counts improve and stabilize. With lower white counts, our bodies are not able to fight off even simple ailments (usually its noticeable enough by how we pick up every little thing) so the Coronavirus being as deadly as it is wouldnt be something anyone with a weakened immune system could handle. Taking everything I know about OC, patients, the new Corona virus and what my doc and I discussed, Im fairly certain almost every one like me (an OC survivor) is in the high risk category. Other frequently mentioned issues that people have making them at a higher risk of contracting the Corona virus ... age, being over 65 yers old, currently being treated for cancer (any kind), an already compromised immune system, smokers, asthma, even organ transplant patients are considered high risk.
Even though I am almost 13 years post rads/chemo I still have a low resistance to things. Last I saw my doc, he advised me I am in the high risk category and urged me to take extra precautions to avoid getting the virus as its deadly to someone like me. My doc surprised me by saying that he suspected the chemo I had way back when is now causing me some late after effects. I know of a great many who are long term survivors and have some serious medical conditions pop up out of the blue even though they're over 10 years cancer free. Crazy isnt it? OC patients/survivors can develop many other serious issues with the heart, kidneys, blood pressure etc many years after they're given the all clear.
Best wishes to everyone. PLEASE be extra cautious and follow the advice we're getting in the news, newspapers, online, over the radio, from postcards and every other way we are continually bombarded with tips on how to stay safe. Its a deadly disease, especially to OC patients/survivors. When it first began showing up in the US, I instantly had a very bad feeling. After going thru absolute hell with my 3 rounds of OC, its unfathomable to think a pandemic is what takes my life. Im doing everything possible to avoid people, staying inside even on the nicest of spring days. I hope everyone else is also being extra cautious. Just considering the impact of losing so many people worldwide is overwhelming and difficult to process. I am hoping none of our members of their families are touched by losing someone close to Corona.
Be well, stay safe and best wishes to everyone and their families during these uncertain times!!! Everyone MUST be smart and follow what we are told will help keep us well and virus free. Good luck everyone!!!
Day 8: I seem to be developing an itchy rash on my lower legs. Took some pictures and used a patient app to message one of my team doctors, who I am seeing next week. No signs of a rash on my upper body or arms yet. No fever. No sneezing or coughing. Just an itchy rash. Could be worse.
My tongue seems to be healing well since the end of my radiation treatment last week. The sores are not hurting as much right now. Mucus thickness has declined. Not drooling as much anymore at night. I am eating a pot pie soaked in cream of chicken soup thinned with milk. Able to swallow without choking on small chunks of food. Woo! A few days ago I was limited to cream of wheat and ensure.
My neck burn is not peeling anymore. Happy to keep my daily intake up every day. I try to take a walk when I can and had my bike fixed so I can take a ride the next warm day we get here.
Are you on pain meds? It sounds like you should be on opiates with as much pain as you are in. Pain meds should help alleviate your pain enough to be able to eat. Which leads me to ask if you are consuming enough protein (and calories in general) on a daily basis?
Our bodies need extra nutrition to heal as we recover from treatment. I am 8 days post-rads now my tongue looks much better now than it did last week. I try to get around 3,000 calories per day & consume over 100 grams of protein each day. Make sure you stay hydrated as well.
Mayo was his third opinion. The previous 2 hospitals did not feel they could do much for him but Mayo has a treatment plan.
He is frustrating me through this virus. I am staying home so I do not bring any germs home with me to contaminate him (I am a very healthy individual) but he can't stay home. He's driving to town every day to purchase things. I do not want to have the guilt of thinking I made someone else sick who is already facing a huge mountain ahead but.......the rules don't apply to him (in his head).
Thank you for the advice. I have been researching this as well and that is what scares me the most at this point. I am going to see my GP next week to plan how to monitor it, specifically in terms of symptoms and frequency.
For now, for what it's worth, I've added a whole bunch of "cancer-inhibiting" foods in my diet, like raw garlic, walnuts, green tea, turmeric+curcumin, as research shows that these foods slow down (if not prevent) the growth of cancer cells in the body.
Thanks for taking the time to reply, I am going to keep you updated.
CONGRATS on finishing your treatments!!!! Im sure you are anxiously awaiting being able to finally go home. In case you have anything pop up, your medical team is still working for you so dont hesitate to call for any changes you notice. Rads continues to work even after treatments have been completed. Have patience in your recovery speed. Its still all about the intake, the better you do with it the quicker your will begin to feel a little better. Im sure you've had a very long road with rads and you still most likely will run into some ups and downs during your recovery. At least you will be more comfortable being back home and the worst is almost behind you. In 2 or 3 weeks you should finally be thru the hardest part of the entire journey.
For me, I kept my mask since I completed rads w/ chemo back in in 2007. I actually found a way to put it to good use. The mask is frequently part of my anti-tobacco presentations I do at local schools. Besides my admin duties with OCF, I do several other public service type projects that keep me pretty busy. I'll spare you the details of my post-admin projects. The mask is part of my presentation at schools that are within driving distance from where I live. It always has quite a shocking effect on the audience when I explain how the mask is used to bolt us down to a skinny, cold table for our rads treatment. If I had to put a number on it, Id say 12,000+ students have seen my mask at my school presentations. Im certain the mask was quite a conversation starter when the students told their family about their school day. You never know what your future holds so if at all possible, hang onto your mask. If nothing else, its a reminder of how far you have come since being bolted down to that skinny table.
his only issue is that sweets don't taste sweet. otherwise, food is pretty much the same as he remembered it and remember he didn't take any pain meds through treatment. Hard to believe, I know but he was so afraid of constipation, he refused to take pain meds.
It's just hard to have empathy for someone who has to pave his own way all the time.
Thank you (yet again) Christine. Your comments are both very touching and inspiring. The cancer centre here in Toronto has a fitness centre and classes specifically designed for cancer patients. My “wellness assessment” to test for preparedness for exercise is this afternoon. I think it makes sense to work extra hard to prepare for whatever is coming.
Congrats on finishing treatments, Paan!!! Thats great news hearing you are maintaining your weight and you're already able to eat by mouth again. Recovery isnt easy, especially the first few weeks of it. Best wishes to you for your continued speedy recovery!!!!
I got mine removed. I started 10 years ago with severe dysplasia and have had it removed 5 times. Then had carcinoma in situ removed in December - that was deeper than most removals. However, they had identified my cells around 27 or so... I thought the dentist was trying to get more money out of me. How wrong I was...
Now I have another small lesion... 2 months after the last removal. 🤦🏼♂️
I am going to start a new post but thought I would respond on this one first.
What you mentioned sounds like what they plan on doing after they see how much radiation he has had. he is having a CT guided biopsy in the morning. Then the amount of radiation determines if he does the 5 days or 6 weeks of radiation I believe.
They believe his response to chemo and radiation was so good the first time that this area was probably missed due to it's location and I will say that area was lit up even at his first PET scan and they didn't know if it was cancer or inflammation.
They are also looking at using Keytruda or Opitvo (sp?) for the immunotherapy.
This doc says she has only lost 1 patient who had this similar situation and expects a 80-90% success rate. He would get treatments for immunotherapy an hour away but I believe the radiation would be 5 days or 6 weeks at Mayo since we are 4 hours south.
thanks for telling your story Paul as we had not been told about possibly surgery being a option.
He is so happy with Mayo because they are much more positive than University of Iowa has been.