BOT Squamous Cell Carcinoma w/3 lymph nodes: Week by Week

BetsyW

Greetings,

I've never posted on this site, but I've read it often over the past several months as I've gone through cancer treatment. It's been so helpful. I can't thank everyone enough. I know the following is long, but this is the type of information I was looking for when I was first diagnosed. I found it on this site and I wanted to do the same for others looking. So here goes:

CANCER TREATMENT TIMELINE

 

I am a 61-year-old female in good health. I first noticed a lump in neck mid- to late-December 2017. I had been sick with a respiratory infection in November and December, so I thought the swollen glands were a result of infection. On New Year’s Day, I had a retired nurse feel my neck. She advised me to go to the doctor, which I did the next day.

My general practitioner  prescribed a 15-day round of high-powered antibiotics, went ahead and ordered a neck ultrasound the day those ended and scheduled an appointment with a head/neck cancer/ENT surgeon, for the end of January. The antibiotics had no impact, the lump was still there, and the ultrasound raised alarm bells with the GP. I received a telephone call after returning home from that test to come back and have a CT scan, which showed something.

I didn’t want to wait the two weeks to see the ENT surgeon and made an appointment with another ENT, who pulled a biopsy, although he didn’t see anything when he ran the scope down my throat. The biopsy came back positive for malignant cells, but didn’t offer any definitive cancer diagnosis.

 

I called my GP and she immediately made arrangements for me to have a PET scan on Friday prior to my appointment with the ENT surgeon on Monday, which would put us ahead of the game. When I saw the surgeon, he said his first, second and third guess was that this was HPV, originating as a tumor on the base of my tongue (which he could not see with the scope) and moving into my lymph nodes. (I had my tonsils removed as a child, so it was not located in the tonsils.) Surgery was scheduled on Feb. 16. The biopsy, which was somewhat uncomfortable but not intolerable, confirmed the surgeon’s suspicions.

Surgery went as expected; fortunately, the surgeon did find the tumor, which was quite small at 1.2 cm, and he robotically removed that plus other tongue tissue surrounding, as well as three lymphs that showed signs of malignancy extra-nodal encapsulation, meaning that the cancer could be spreading throughout my lymph system. A total of 30 lymph nodes were removed from the left side of the neck. So, despite negative margins within the originating tumor, it was recommended by the oncology team that 30 rounds of radiation and 6 rounds of chemo would be needed. Path Report: Base of tongue squamous cell carcinoma 1.2 cm, HPV-16 Positive; negative margins; 3 lymph nodes involved with extranodal extension (the largest of the three was 1.7 cm), stage was not defined.

Recovery from this surgery is not for the faint of heart, and it is extraordinarily painful (but it is worse with the radiation, so get ready). They inserted a feeding tube during surgery up my nose; I was not happy about this, and the next morning, I demanded that it should be removed. It was, and I was able to eat grits and eggs immediately afterward. Things went downhill from there for the next several days in terms of eating; as my throat became swollen, I could not swallow any pain or constipation medication. I lost about 10 pounds during this two-week period, but eventually put all of that weight back on after my appetite returned and my throat healed. I did have some unexpected bleeding, and the doctor did re-admit me to the hospital for an overnight observation about 10 days after my surgery, in the event the bleeding became excessive. Nothing more eventful occurred.

Once I was ready to start treatment, because I already had tinnitus, I had a hearing test, and the oncologist was not happy with the results. Thus, my chemo regimen included carboplatin (as opposed to cisplatin, which increases the likelihood of tinnitus and possible hearing loss but is used more often because it is more effective) and Taxal.

The week prior to beginning treatment, I visited my dentist and was fitted for a fluoride tray, which I began using immediately, putting the fluoride in the tray and wearing the tray for 30 minutes each night. I am continuing to do that after treatment has ended, and I’m not sure if/when I will stop it. Radiation can have negative impacts on teeth and jawbones. I also met with the swallow therapist, who gave me exercises to better engage the muscles in the my throat and to strengthen my tongue. This was extremely beneficial.

Also prior to beginning radiation, we had read about a clinical study where patients utilized a saline nebulizer, which was thought to keep the throat moist. We opted to invest the $50 into the nebulizer and whatever it cost for the saline tubes. The money turned out to be a minimal investment; the much much larger investment was time, as this treatment was not shown to be effective without a minimum of four hours a day spent hooked up to the nebulizer. We made the investment, and I think it really helped. While we would follow everything in the study, we did adapt it the best we could, and I think it was still effective. https://www.oncologynurseadvisor.com/web-exclusives/humidifying-mouth-and-throat-during-radiotherapy-reduces-mucositis-and-hospital-stay/article/339034/

Except for two weeks immediately following surgery, I continued to work throughout the recuperation and the chemo/radiation. My treatments began 39 days following surgery, which at least one clinical trial we came across shows that starting treatment within 42 days of surgery garners better percentages, at least in the two- to four-year term immediately following treatment. http://www.ascopost.com/issues/april-10-2018/delays-in-radiation-therapy-for-head-and-neck-cancer/

About a week prior to treatments starting, I was fitted for my head mask and went through the scan to pinpoint treatment areas. I scheduled my radiation appointments for early morning, so that I would have to get up, get showered and dressed and be ready for the day. This also enabled me to contact my team in the event something happened later in the day, which it never did.

Week One: I began treatments on Tuesday, March 27, 2018. While the mask was uncomfortable and I was pretty mad about having to go through this, it was uneventful for the first four days. I tolerated the chemo well the first week. A bare amount of nausea, but it did not last. I was continuing to eat solid food. During the course of Week One, we read about MuGuard, which has been shown to coat the throat and protect it somewhat during radiation. I also began physical therapy this week to address the extreme, burning pain I had in my shoulder and arm from the surgery. I have continued this throughout the treatment period, until I temporarily stopped during the seventh week after beginning because of the neck burns. More on that later. I also signed up for thrice-weekly acupuncture, a calming and helpful experience, and I began sleeping on an elevated wedge pillow to help my lymph system drain properly. I also started acupuncture three times a week, which I continued until the sixth week, when I stopped because I couldn’t work anything else in to my time schedule.

Week Two: On Monday evening, I lost my sense of taste. This was after one chemo treatment the previous Thursday and five days of radiation. I still continued to eat solid food, despite not being able to taste it, for the next five or six days, then had to move to liquids only because my throat was becoming too sore and too swollen to tolerate solids. Toward the end of week two, the pain began to be significant when I opened my mouth in stretches and conducted my swallow and tongue exercises (but I still did them). It was also during this week that my radiologist gave us a sample of the MuGuard. It was extremely unpleasant but helped significantly. I began by using it just prior to the treatments, and for a few days, I also swallowed it two other times a day. However, while I did continue using it just prior to radiation treatments, I eliminated the other two because its taste was abhorrent (even without having any taste!!) and I could not make myself swallow it. Depression also began to set in toward the end of this week, thanks to no taste and going on liquids. During this week, I began taking a daily liquid multi-vitamin and three daily doses of Il Glutamine, an amino acid to help muscles.

Week Three: This began to be my worst period, and I considered stopping treatment because I just didn’t see how my poor little throat would be able to tolerate 15-20 more treatments. I met with the radiologist, who of course encouraged me to continue but also noted that it was my choice to stop at any time. It was at this point that I just steeled myself to stand up, act like a grown-up and play the cards I had been dealt. I tried several different drugs for pain at the end of week two into week 3, including morphine (I took this once on what is arguably one of the worst days I had and did not like it at all), hydrocodone with tylenol and tylenol 3. I tolerated the hydrocodone and took this over a four-week period about three times a day. I upped the usage of the salt/baking soda rinse to around 50 times a day, and continued to do that into the eighth week. The phlegm and mucous were increasing to intolerable levels, and life was pretty miserable. No taste, no appetite, mouth pain, throat pain and fatigue. This was also the week I began losing my hair up the back of my head, which was due to radiation. At this writing, it is unknown if that will return.

Week Four: Mucositis sets in, the plague of phlegm and mucous continues, and I need a little more rest. However, it seems that the chemo treatments, with their weekly steroid cocktail, are giving me a bit of a bump on Thursday nights and Fridays, with the crash coming in on Saturday. This was the week I saw the oncology nurse practitioner, who had the most practical advice and was no-nonsense in prescribing drugs I needed, including something that helped significantly with the phlegm and mucous. While it didn’t completely eliminate it, it did reduce it, and at night I had no problem with this. I also was given a mild steroid to take each morning. Water has become intolerable to drink at this point (it was very stringent on my throat), and the staff prescribed thrice-weekly hydration infusions at the infusion clinic. This meant I was getting infusions four times a week. Time for a PICC, which was done at the end of week five, since my veins were going away and I was tired of getting stuck multiple times for an IV. This procedure was quick and painless, and it saved me over the next three weeks.

Week Five: Continued rocking along through week five, with symptoms not seeming to worsen with any major significance. Continued with the Muguard prior to each radiation, continued with the pain management/phlegm pills, increased bed rest by a couple of hours, continued with the nebulizer, and continued to feel the effects of everything.

Week Six: I was tolerating things fairly well through Week Six and the end of my chemo/radiation treatments. Because I had started on a Tuesday, I still had one more to go (the 30th) on a Monday. After speaking with my healthcare team, I opted not to subject myself to the 30th treatment after taking the weekend off. If the timing had been different, I would have finished, but the reward of one more treatment was not worth the risk. I have not regretted that decision.

Week Seven: Treatments are completed, but as noted by previous people, radiation is the gift that keeps on giving. The burn just continued to roll in, both on the exterior and the interior, and by Thursday, I was pretty miserable. Throughout my treatment, I consistently used organic aloe vera (without citric acid) first on my neck, followed by candula (marigold) oil, hemp oil and when I could stand the smell (it was very very strong), lavender. I also did use the Aquafor they recommend. And that week, they prescribed the SSD (1% Silver Sulfadiazine) cream which I used for about three days to hit the areas that were kind of weepy and open. To add insult to injury, the mucositis escalated to its very worst point on Thursday of this week, and it was (and has been) at its worst right at where my gag reflex is located. Talking for too long makes me gag; brushing my teeth makes me gag; swallowing can make me gag. I stopped PT and acupuncture this week because of the severity of the neck, but plan to resume both of those within two weeks.

Week Eight: Still no taste, although I have begun to occasionally taste the salt in my mouth rinse, and my shakes will also taste a little sweeter. This is hit or miss, but I am hopeful the taste will return sooner than later. My neck burns started clearing up pretty well by Monday of this week, and I am continuing to treat this three times a day with the aloe and oils. I am still dealing with gagging and at this writing, I still have mucositis and my speech is affected by the swelling in my throat around my larynx. I have asked for appointments with the swallow therapist and a lymphedema specialist. I want to be proactive in doing everything I can to eliminate the lymphedema, and I most especially don’t want interior lymphedema, which is more difficult to manage.

So, now I am ending week nine of this process. I have begun light work-outs on the Total Gym (mainly to regain some muscle mass) and to work my shoulder and arm. Once the neck is completely healed, I will begin slowly working back into my walking, stair-climbing, modified push-up routine, which was my “hour of power” prior to all of this occurring. I have lost somewhere around 20 or so pounds, and for the most part I have been consuming 700-1000 liquid calories a day through organic vegetable shakes, almond milk and chicken bone broth. (Dairy products seemed to increase the phlegm, and ice cream made it too thick.) Pot butter and melted marijuana gummies, plus pot brownies ground into my shakes while I could still drink that, have been of immense help with my psyche and my pain.  Taste is beginning to return in spurts, giving hope that it will return to normal or nearly so in the coming weeks. I have also begun moving to pureed soups and will meet with the swallow therapist to see how quickly I should proceed to soft, solid foods.

Most Helpful:

--MuGuard drinking immediately prior to radiation treatments. If you have friends in the UK, ask them to get this and send it to you. This prescription costs $1500 (yes, fifteen hundred dollars) in the US. It can be purchased over the counter in the UK for around $30 a bottle. (I will refrain from comment on what should be considered a criminal practice by Big Pharma.)

--Nebulizer: It was a hassle, but the nebulizer really helped my throat feel better. It is critical that the unit is ALWAYS clean prior to using it. I stopped doing it for the full four hours about the fourth or fifth week, but I continued to do it at least two hours a day, usually when I awoke around 4 am.

-- The salt/baking soda rinse. I cannot stress how important this is. At the peak, I was using this 40 or 50 times a day, and most of the time I swallowed it to help my throat.

-- Phlegm pills. Took them three times a day, they helped. A lot.

-- Taking enough pain management. I didn’t begin on narcotics until somewhere toward the end of the third week, relying on tylenol and advil to that point. We got a pill crusher and began dissolving all medicine in aloe water. For about four days, I was taking hydrocodone four times a day, but then cut back to three and then to two. Still taking Tylenol 3 twice a day, but expect to reduce that to once sometime toward the end of week 10 or sooner, and then eliminate in Week 11.

-- Continuing the mouth stretches and swallowing exercises throughout the treatment period and beyond. This is critical. I have virtually no problems at the end of the nine weeks swallowing.

-- Aloe water. When I couldn’t drink anything else, I could tolerate that in small quantities.

-- Hydration sessions. These kept me hydrated, feeling stronger, and they kept me from getting a feeding tube.

-- Physical therapy. If you have the neck resection surgery, you definitely will need PT to help rebuild that muscle and all those nerves. I still can’t feel anything much in the neck where the lymph nodes were removed, but that burning, stinging mass of muscle and nerves in my top back shoulder became a never-ceasing source of pain that did not stop until I was about a week into physical therapy.

-- Maintaining aa close to a regular schedule as possible. I own a business that I run from my home, but I also work part-time in an office. I continued working on both of these, and getting out of the house for work was a nice change of scenery.

-- Continuing to brush my teeth and using the fluoride trays at night throughout the treatment period and beyond. I did have to cut out the flossing in the third week, but have renewed that now. I use one of those rubber-tipped pics to run around the my tooth/gumline to keep plaque from building up.

-- I had a top-notch team assessing my condition, recommending and overseeing treatment and offering encouragement. I am extremely grateful for all of them and their gift to me of their expertise and knowledge.

-- Having a life partner who was absolutely dedicated to relentlessly researching everything so that we had the best course of treatment and home healthcare. Kim is the best!

bebo12249

Thanks for sharing; it will

Thanks for sharing; it will be very helpful to new members. Bill

katlou

Thank you

I want to thank you so much for this valuable information.  So far I have only had to have surgery for stage 1 SCC of tongue but I read most of the posts here to learn more in case I have a reocurrence and need radiation and chemo in the future.  Your information will be helpful to many, many people in this situation.  I wish you the best of health.

BetsyW

Solid Food Again!

Just to provide an update -- I went for a swallowing video test this afternoon, and they cleared me for solid food! I do have two places in my throat that have definitely narrowed and could be problems, so I definitely need to take small bites, chew thoroughly and swallow thoughtfully. They also are recommending that I go for the throat dilation in a few weeks. In the meantime, I went out and enjoyed sauteed salmon with buerre blanc and a baked potato! Couldn't eat it all, and my taste comes and goes, but it sure was good to chew and swallow solid food! They also gave me some additional exercises that should help. Hoorah!

 

Thank you for the nice comments on my previous post. I hope it is helpful.

ProustLover

Worthy of Superthread

Thank you for all this info and realistic summary of what could and does happen.  I'm hoping your recovery continues on track.  

BetsyW

End of Week 10

Tomorrow I will end Week 10 since this all began.

Good things: Nasty thick mucous and phlegm have receded significantly and are almost gone. I am eating -- even Ritz Crackers and peanut butter, my favorite snack! -- and other things. I have an affinity for sweets and crunchy stuff, but I am still supplementing food with liquid protein drinks to keep up calorie intake. Swallowing has improved, as has my voice, which was sounding swollen and odd. Still not back to normal, but getting there. Walked two miles yesterday and have continued to increase neck and shoulder exercises.

Challenges: My dry mouth has come in with a vengeance. Fortunately, I can drink lots of water and not choke, and while improving, swallowing can still be challenging. I finally understand what everyone means about food tasting metallic. It is extremely unpleasant. Fatigue gets me toward the end of the day, and I find myself going to bed earlier than would be considered normal. My tongue and left jaw are stiff and it is challenging to run my tongue over the side of my back molars. Working to increase those mouth exercises.

I did have a swallow video done last week to see where the issues were. They found two places and suggested that I am a candidate for throat dilation. Is this painful? What is the procedure? Would like to know from someone who has experienced this!

Thank you all for your wonderful information. Your threads are so helpful and encouraging.

I am improving week by week. Hooray!

hortensiacesar

Swallowing problems

Many thanks for sharing about your ordeal, for giving us so much helpful and detailed information on every step you have walked thru and mostly for your successful life story! Bravo!! 

I am the daughter of a 101 super mother that showed to have swallowing problems in 2017. Yes, I said 101.

I took her back to Moffitt in 2017 in Tampa after 17 years of her last Thyroid surgery which had not spread to the rest of her body. Her genes had been super good. This time, no help from professionals. By now my mother could not speak out for herself or say where it was hurting.

Then, during an ER visit this past January they paid attention to her left breast and ..they did nothing.

Today,August 1, 2018, my 3 siblings, who never participated in her care, have the last word .. and they pushed the morphine cocktail and the cremation arrangement.

Many thanks for this space. Many thanks again for telling us about your survival. Yes, Hooray!!! I love to hear from all those survivors that fight hard, can take their own decision regarding what have helped them or not and do not allow others to push them into things that do not work.

Many thanks also, because we, out here, learn so much from you and we can pass it on!

ericyvonne

Thank you!

This is a GREAT resource!!  Thanks so much.  My husband is on his 8th proton-rad treatment today, had 1 dose of cisplatin (supposed to be every 3 weeks) but started having hearing issues so now will be switched to weekly carboplatin.  So he is mid-way through week 2 (he also had robotic surgery and partial neck dissection in July).  He has a lot of nausea and biggest complaint is the phlegm.  So I am going to ask about nebulizer and phlegm pills (do you have name of pills?).

I printed off your week by week and advice so I can show my husband and use as reference!  Thanks again so very much!!!!

 

kmadlom

ericyvonne said:

Thank you!

This is a GREAT resource!!  Thanks so much.  My husband is on his 8th proton-rad treatment today, had 1 dose of cisplatin (supposed to be every 3 weeks) but started having hearing issues so now will be switched to weekly carboplatin.  So he is mid-way through week 2 (he also had robotic surgery and partial neck dissection in July).  He has a lot of nausea and biggest complaint is the phlegm.  So I am going to ask about nebulizer and phlegm pills (do you have name of pills?).

I printed off your week by week and advice so I can show my husband and use as reference!  Thanks again so very much!!!!

 

Better all the time

Ericyvonne, I am posting this under kmadlom, my spouse and caretaker, because I can't remember my password, but this is BetsyW. It gets better with each passing day. I just returned from a three-week celebratory (and well-earned) trip to France, where I enjoyed great food and magnificent views of a beautiful country. My taste is not 100 percent, and some days are better than others. Often, my taste is pretty good at the beginning of a snack or meal, but then fades away. It's great for portion control, but can be very frustrating. For most of my adult life, I have been an avid cook with an excellent palate who reveled in being able to taste a soup or sauce in a five-star restaurant and then come home to recreate it. Those days are, at least for the immediate future, on hold, as most of the time I think everything needs more salt (which it doesn't). Sweets are my fav (this is new), wine is a no-go because it burns my throat (dang it! -- although I can enjoy the occasional light vodka and club soda with friends), and I still have a gravel voice in the mornings. I recently came down with my first cold/cough, and it wickedly hung on for three weeks before subsiding. My energy level is virtually back to 100%, and we are planning our next vacation for next September/October -- a 90-mile self-guided lakeside walking tour in Northern Italy. The first six months of 2018 were among the hardest I have ever experienced, with the most serious and most affective health issues I thought I would never have. The second six months of 2018 have started much better and promise a return to my normal, very happy life. It's not perfect (I have to exercise my tongue and jaw and do daily neck massages to reduce lymphedema from creeping in), but the improved saliva flow and the promise of returning taste keep me upbeat and positive. I have returned to all normal work activities, and am getting a new take on my social activities (something great to do every night this week!). I will say that, even though I was switched to carboplatin, the tinnitus in my ears has escalated and my hearing has declined as a result of chemo. I am going for hearing aids soon, as I really really hate missing out on so much conversation. Hearing aids are much improved over the ones my father had to wear! I apologize for the lateness in getting back to you on the nebulizer. It's a hassle, but I think it is worth it. And when you don't feel like getting up to do anything else at 4:30 in the morning, why not do it?? It helped me. The phlegm has gone away. I can't find the name of the medication I took for that; it was prescribed by my oncologist, and I took every pill. It can create side effects 20 years down the road if taken for too long, but I took one 30-pill round, and it made all the difference in the world to my quality of life. Everything I read said that short-term treatment with the drug would not cause the side effects later, so I felt like the reward was worth the risk. I still wear a fluoride tray every night, although I have cut it down to 10 minutes. My dentist recently told me this also has impact on my taste buds, so i am much more careful about getting it on my tongue and swallowing the excess fluoride. I am thankful that my experience has been helpful to you and your husband, and I hope you will take heart in knowing that it will be over soon and life WILL be good again. I hope only the best for you! Betsy

 

kmadlom

kmadlom said:

Better all the time

Ericyvonne, I am posting this under kmadlom, my spouse and caretaker, because I can't remember my password, but this is BetsyW. It gets better with each passing day. I just returned from a three-week celebratory (and well-earned) trip to France, where I enjoyed great food and magnificent views of a beautiful country. My taste is not 100 percent, and some days are better than others. Often, my taste is pretty good at the beginning of a snack or meal, but then fades away. It's great for portion control, but can be very frustrating. For most of my adult life, I have been an avid cook with an excellent palate who reveled in being able to taste a soup or sauce in a five-star restaurant and then come home to recreate it. Those days are, at least for the immediate future, on hold, as most of the time I think everything needs more salt (which it doesn't). Sweets are my fav (this is new), wine is a no-go because it burns my throat (dang it! -- although I can enjoy the occasional light vodka and club soda with friends), and I still have a gravel voice in the mornings. I recently came down with my first cold/cough, and it wickedly hung on for three weeks before subsiding. My energy level is virtually back to 100%, and we are planning our next vacation for next September/October -- a 90-mile self-guided lakeside walking tour in Northern Italy. The first six months of 2018 were among the hardest I have ever experienced, with the most serious and most affective health issues I thought I would never have. The second six months of 2018 have started much better and promise a return to my normal, very happy life. It's not perfect (I have to exercise my tongue and jaw and do daily neck massages to reduce lymphedema from creeping in), but the improved saliva flow and the promise of returning taste keep me upbeat and positive. I have returned to all normal work activities, and am getting a new take on my social activities (something great to do every night this week!). I will say that, even though I was switched to carboplatin, the tinnitus in my ears has escalated and my hearing has declined as a result of chemo. I am going for hearing aids soon, as I really really hate missing out on so much conversation. Hearing aids are much improved over the ones my father had to wear! I apologize for the lateness in getting back to you on the nebulizer. It's a hassle, but I think it is worth it. And when you don't feel like getting up to do anything else at 4:30 in the morning, why not do it?? It helped me. The phlegm has gone away. I can't find the name of the medication I took for that; it was prescribed by my oncologist, and I took every pill. It can create side effects 20 years down the road if taken for too long, but I took one 30-pill round, and it made all the difference in the world to my quality of life. Everything I read said that short-term treatment with the drug would not cause the side effects later, so I felt like the reward was worth the risk. I still wear a fluoride tray every night, although I have cut it down to 10 minutes. My dentist recently told me this also has impact on my taste buds, so i am much more careful about getting it on my tongue and swallowing the excess fluoride. I am thankful that my experience has been helpful to you and your husband, and I hope you will take heart in knowing that it will be over soon and life WILL be good again. I hope only the best for you! Betsy

 

Dilation

One thing I forgot to mention. Despite having a strong swallowing reflex from doing all those exercises, my video did show two places where my esophagus had narrowed because of the radiation. On July 29, I had the balloon throat dilation (a very easy procedure where I was in a heavy twilight sleep), and it definitely helped. I didn't think so immediately (throat was swollen and irritated from the procedure), but after a couple of weeks, I could definitely tell the difference and still can. Swallowing Advil, which I take from time to time, is no longer an "experience," and I do not get choked. Some foods still stick in my throat, potatoes in particular, but I can eat virtually anything I want and it goes down just fine. I am now getting back into some spice, and that's taking a little longer but I am determined to do it! Oh, and my hair, which fell out twice (the last time in June), is growing back very nicely. While it is possible it will fall out again, I'm thinking it won't. It's about an inch long so I am hopeful it will hang on this time!