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.

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

Thank you for the replies

Also unfortunately medical scans like MRIs can’t detect microscopic cancer cells.

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!!!


!!!***!!! ******* LINK TO THE CDC'S CORONA VIRUS WEBSITE >>>>>> CDC's Corona Virus website ******** !!!***!!!

Thank you both for your recommendations! I guess we will have to see what will work best as we go along.

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.

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.

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.

thanks for all the words. i do appreciate them

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. 🤦🏼‍♂️