Stomach Cancer - My Journey

Radiation treatment #1.

Had the first new chemo treatment yesterday and I see results already. I can eat and talk without pain in my tongue. I noticed this last night. I can also move my tongue more. The lymph nodes under my jaw have shrunk to half the size they were yesterday.

Radiation called today to schedule radiation for next week, but I'm questioning whether we should hold off another two weeks until my off week of chemo instead of interrupting treatment this early.

Radiation doc and my oncologist are going to talk it over and let me know what they think, but it seems my oncologist is thinking like I am and keep going with chemo.

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Nothing like catching some fish.

It doesn't get much better than when the sun is coming up over the trees, the bass are biting and the beaver are out for their morning swim.

Got my pool patch on. 😂 The liver ablation was a success today.

Help advance gastric cancer reseach by joining the Stanford Gastric Cancer Registry.

gcregistry.stanford.edu

Eating After a Total Gastrectomy

I was on a liquid diet for the first two weeks, then on a soft diet for two weeks and then back to solid food beginning of week five.

Eating began with breakfast on day three in the hospital. They served me cream of wheat, apple juice, Italian Ice and coffee. Lunch was tomato soup, applesauce, Italian Ice, apple juice, coffee. Dinner was the same just with a different version of the tomato soup. This was my menu for the remainder of my seven day stay, with ice cream, pudding and mashed potatoes substituted now and then.

The first week back at home I was still on a liquid diet, but I ate anything that was no thicker than pudding. My diet consisted mainly of a variety of soups...tomato, chicken noodle or chicken and stars, cream of celery or chicken. Cream of “whatever you like” goes down well.

Along with the soups, I ate pudding, Italian Ice, ice cream or popsicles/cool pops, apple sauce, Jello, watermelon. Water or fruit juice to drink as I am not a coffee or hot tea drinker. Not a fan of Ensure or Boost either, but would drink one now and then.

Week 2-4 soft diet. I was so glad to move up to soft foods. I never wanted to see tomato soup again. My wife would puree chicken or beef after she cooked it. Not the most appetizing to look at, but tastes the same as if it were whole. I like fish, so broiled or baked (not breaded and fried) salmon, flounder, tilapia etc were a go to. Pasta was back in my diet. I would pop open a can of Spaghetti-O's like I was a kid again, but stuffed shells, ravioli, lasagna and spaghetti are my favorites.

Bread: I could eat wheat bread or a stiffer drier type of bread. White bread would ball up going down and get stuck. Even though I have no problems with white bread anymore, I still mainly eat Honey wheat or whole wheat or a stiff Italian (like a hoagie roll) bread or potato bread.

Eggs and peanut butter are excellent sources of protein.

Fruit: Canned (heavy syrup for calories) peaches, fruit cocktail or fresh soft fruit like watermelon, blueberries, strawberries, grapes.

Vegetables: Well cooked soft veggies are fine. No raw veggies yet. Mashed potatoes or a soft baked potato with shredded cheese, butter and or Caesar or similar salad dressing was a favorite. Pickled beets and red beet eggs...I always have a jar of them in the fridge. I would put butter or Italian dressing on my vegetables for added calories.

I still do this...make a veggie salad (no lettuce) with 3-4 small cans of veggies. A can of diced or stewed tomatoes, peas, chick peas (high protein), kidney beans, carrots, beets, string beans, well cooked broccoli, cauliflower...whatever you like. Dish it up and add grated Parmesan cheese or shredded cheese and top with Italian dressing for taste and calories. Add hard boiled eggs for protein. I add olives, beets or pickles also. Whatever you like...

Week 5...back on solid food. “If you can chew it, you can eat it” is what my surgeon told me. I wouldn't eat raw vegetables that are hard like carrots, cauliflower, radishes, potatoes, turnips etc yet. I stayed away from hard fruits like apples and pears also.
Your connection is still healing, so chew well or stay away from any food that may cause damage. I stayed away from hard taco shells, Doritos, potato or corn chips and hard pretzels for a while...anything that was sharp if not chewed well enough.

3,000 calories per day with a TG – You Can Do It!

When my nutritionist wanted me to eat 3,000 calories per day, I said to her “You do know that I have NO stomach, right?” There is no way I can eat that much...wrong!

I was only 4 weeks post TG and not eating much at one time. I could probably eat a cup sized portion every 20-30 minutes. I grazed all day, concentrating on protein and calories. I would grab a handful of grapes or a half of a pop tart or a cookie or two or a spoonful or two of fruit or ice cream or peanut butter whenever I was in the kitchen. We have an open room design so I was always near the kitchen...lol.

What put me over the top was my nutritionist suggesting that I add non-filling, high calorie toppings to whatever I could. She wanted me cooking with olive oil or butter. Butter, no problem...olive oil...I don't like the taste. Using whole milk, lactose free in my case. It is not uncommon to become lactose intolerant after a TG or PG. I can eat processed dairy products, but not drink regular milk straight.

I add mayo or Miracle Whip, salad dressing, grated or shredded cheese, sour cream, jelly...anything that would add calories, to whatever I was eating. It's not a lot at one time, but a TSP or TBSP here and there add up. Two TBSP (1 serving) of peanut butter is about 200 calories (give or take depending on the brand) and 8 grams of protein.

I ate and still eat yogurt everyday. 6oz. Walmart brand has 130 calories and 5 grams of protein. 4oz. Activia brand yogurt has 90 calories and 5 grams of protein. Greek style yogurt is higher in calories and protein than regular yogurt. I buy whatever is on sale. My favorite is Yoplait OUI” french style. It has 170 calories and 5 grams of protein per 5oz. Serving.

I usually have two eggs for breakfast, along with two slices of toast with butter and jelly now that I can eat that much at one time again.

Boost and Ensure...she wanted me to drink 2-3 of these a day. Sorry...lucky if I could choke down one. I just don't like protein drinks in general....neither the taste and/or the texture/thickness. Thinning them with milk helps, but still not my cup of tea. I would eat extra peanut butter to make up for the protein in these drinks.

Below is a sample menu for one day. 3,104 calories with 126 grams of protein. Utilizing toppings accounts for 634 calories. You will say there is no way, but if you graze all day, it is easily accomplished. You may not be able to eat the entire meal at one time yet, so eat what you can and come back in 15-30 minutes and eat some more. Nothing says you have to eat the entire yogurt at one time...a spoonful every so often and it will be gone before you know it. A few grapes throughout the day adds up to a full serving eventually.

Eating is your new job for now. If you eat breakfast at 8:00am and don't go to bed until 10pm or midnight...you have 12-14 hours to eat. Pace yourself.

We’re excited to support Patient Advocacy Organization (PAO) Action Week from June 10–14. This first-ever grassroots initiative is dedicated to raising awareness and connecting patients to relevant PAOs.

Follow and visit bit.ly/4bJXdU6 to learn more.

If anyone is interested in helping with a research project and making a few dollars... click the link below to be prescreened.

From the Patient Experience team at CorEvitas. The project we are recruiting for now is a long term advisory board, so this would be a few virtual focus group like meetings over the course of a year. And of course all time in the focus group is paid as well as any “pre work”—meaning if we would ask participants to read anything beforehand or anything like that!

Patient Advisory Panel Screener Patient Advisory Panel Screener.

This event will feature the latest updates to the clinical guidelines for hereditary diffuse gastric cancer.

Penn Medicine Penn Medicine - Abramson Cancer Center

My Personal Ramblings/Insights

Some may not consider this a success story because of the recurrence, but I certainly do. October 2022, I walked my daughter down the aisle, but had to go back to the hotel before the reception was over. After we ate dinner, I was just so exhausted that I couldn't go any longer. We weren't even sure that I would be good enough to walk her down the aisle. I was not even strong enough to ride my lawn mower around to cut the grass. Last summer, it took everything I had just to think straight and eat. My days mostly consisted of laying on the couch watching tv and my wife getting me up to walk around the block.

This summer (2023)...I am pretty much doing my normal activities...just slower. I have been splitting firewood, gardening, lawn work and working on our cars again. In the last month, I have been repairing our roof replacing plywood before the roofers come to reshingle it (cheaper for me to do it), replaced a couple of windows and installed a new front door yesterday.

Last year, I was exhausted just pushing a shopping cart through the grocery store for an hour. This year, I am pretty much unstoppable. My wife still keeps an eye on me and lets me know when she thinks that I am doing too much.

If there is any moral to this story, it's stay positive, surround yourself with expert doctors and caregivers. I wouldn't be here, let alone doing all that I can now do again, without an excellent group of doctors. I wouldn't be here without my wife, who took care of me and made all of my appointments and drove me to every appointment last year and took care of the bills and the house and everything else.

If I had to offer any advice, it would be to stay positive!! I never questioned why I had cancer. Instead I focused on beating it!! Educate yourself, ask questions (no matter if you think they are silly) and push for answers from your doctors if they are not forthcoming. Most cancer patients that I know will gladly share their experience with you...just ask.

If you are a religious person...lean on your Faith. When this all started, I had a long chat with God and gave it all to Him. Basically, I can't fix this on my own. If you have plans for me on earth, then it's in your hands.

I know this a scary. There are so many unknowns, but your MUST keep a POSITIVE mental attitude. You must believe that you will beat this. I know too many patients that never get over the “oh woe is me” or “why me” mindset and they are the ones that struggle. I have seen it and continue to see it. I wish I had the answer to snap them out of it and make them fight.
Life isn't always fair, so get that out of your head and fight. I'm not saying that it isn't ok to have some down times. God knows that I used to hate nights. Lying on the couch...all of the thoughts swirling through your head. Uncertainty, worries...heck, I admit it...there were nights that I bawled like a baby after everyone went to bed. You just can't allow those thoughts to drive your life or incapacitate you. You need to find a way to file them in the back of your mind and move on so you can make the decisions that you need to beat this. If I can do it, you can do it.

Get mad at the cancer if that helps you...tell it that it's not going to beat you. You will beat this awful disease!!

Yes, you will need to push yourself. This will not be easy. It's not easy for you, it's not easy for your caregivers (make sure they take breaks to re-energize themselves or just a mental break from it all)...whether they are family or friends. You will need to lean on them. That was hard for me. I am used to doing things myself. Don't push them away, they want to help.

I had a friend and co-worker ask me for my PayPal account. I said no. She yelled at me that she wanted to help and sending us a few dollars was what she could do. I got the message.

I found that I had more friends than I thought I had. It's a great feeling!

I will stop rambling now. I hope my story shows that stage 4 cancer doesn't mean the end. You can beat this and get back to enjoying life.

I'm here if you have questions or wish to chat.

Just received today's PET scan report...not what I wanted to see. The recurrence to my lung, rib and chest wall is still NED, but....

Focal area of activity in the right liver concerning for a small metastatic lesion. SUV of 5.3.

Focal increased uptake in the central anterior tongue region. For those that have had metastasis to their liver, what was your treatment? Radiation? Surgery?

Anyone have metastasis to their tongue? About 3 months ago, the right side of my tongue shrunk and I can't stick my tongue out passed my lips or make it turn down...like when you lick your lower lip. I had a brain MRI back on Feb 16th to see if there was metastisis to the portion of the brain that controls the tongue...it was clear. Was thinking it was neuropathy from the Folfiri or Opdivo...guess not.

Thanks for any input!!

https://ccr.cancer.gov/surgical-oncology-program/clinical-team/patient-resources-for-hereditary-diffuse-gastric-cancer?fbclid=IwAR29Ubos85kihkv42VKHxE_xqFmQDVuNtrLZ4b5qcFzkeVYuNNVC67r-YFs_aem_Aea84HJBLu8zwA5AB8XicinBM1qIuVCUok0h13TZ52TYTDMUWGa59tvrUnmdjJ2zLd7cC2B0ybPtJe51JhHlrOhW

Patient Resources for Hereditary Diffuse Gastric Cancer | Center for Cancer Research Download PDF We know that there are a lot of things to consider from the moment you think you may have hereditary diffuse gastric cancer, so we’ve collected patient resources for you to use every step of the way. If you have questions or suggestions for additional resources, please email foregut@m...

Party Time!!
Today's PET Scan came back clean...still NED!!!

If you wish to participate in a stomach cancer research survey and be paid to take part, I have posted a registration link below. It's legit. I participated in one hour long interview survey and was paid $125 via a Visa gift card.

If you register, Pillar Patient Advocates LLC (https://www.facebook.com/PillarPatientAdvocates/?fref=ts)
will contact you when a survey that you qualify for is available.

Gastric Cancer Survey Registration Web survey powered by Research.net. Your feedback is appreciated!

https://stocan.org/

Hope For Stomach Cancer - Gastric Cancer Patient Advocacy Movement Hope For Stomach Cancer is the dba for the Stomach Cancer Awareness Network. Hope creates and facilitates programs that enable those affected by stomach cancer to take actionable steps to live the best possible life through each phase of the disease.

Update, October 27, 2023 PET scan shows no changes since July's scan. Still NED.

My Stomach Cancer Journey -The Reader's Digest Version
Randy Geisel

**Updated Continuously**

October 2021, I started having pain when swallowing. Like having a potato chip stuck, where you can feel it going down. Progressed to a shooting pain in my right side and radiating up my back to between my shoulder blades.

Due to employer changing health insurance, I held off until early January 2022 to see my P*P. He referred me to a GI doctor for an endoscopy.

February 8, 2022, a date I will never forget. Went in to have the endoscopy and left being told that I had esophageal cancer. Waited a week for pathology confirmation...yep, cancer.

I wasn't happy with the hospital the GI/Oncologist doctor was associated with, so he arranged for me to see an oncology surgeon at Penn State Milton S. Hershey Cancer Center. We, my wife and I, met with Dr. Peng and arrangements were made for a ct scan, ultrasound endoscopy and then an exploratory laparoscopy where she installed my chemo port at the same time.

The ultrasound endoscopy showed worse than originally diagnosed. I had adenocarcinoma of the stomach. There was a tumor in the upper portion (Cardia) of my stomach that had spread to the lower portion of my esophagus, along with some lymph nodes. Cancer at the GE Junction. Classified as stage 3.

Treatment plan: 4 rounds of FLOT chemotherapy, a total gastrectomy (TG) and 4 more rounds of FLOT.

Dr. Peng referred me to Dr. Judson at Wellspan Ephrata Cancer Center to do the chemo since it was closer to my house than Hershey. I began chemo on March 4, 2022. All went fairly well. There were days where I was so fatigued after treatment when the steroids wore off, that I couldn't lift my head from the pillow and the chemo brain had me so foggy headed that I couldn't answer questions my wife asked of me, but that only lasted a few days usually.

Before treatment started, it had gotten to where I could only eat/drink liquids. Anything thicker than pudding would get stuck and even pudding would not go down sometimes. After the first round of chemo, I could eat solid food again without pain or it getting stuck.

Finished chemo in May and had my surgery in June. She, Dr. Peng, removed my stomach, the lower 2 inches of my esophagus, 28 lymph nodes and a small section of my diaphragm where she found the tumor had grown into. Because of this, pathology reclassified me to stage 4a. Dr. Peng was able to remove all of the cancer. Pathology came back with clean margins and only two of the lymph nodes were still malignant. She installed a J-tube for feeding also.

The surgery was a breeze. I had open surgery, so expected to be in pain, but Tylenol took care of it pretty well. I did take Tramadol before I went for walks. I didn't take any pain meds at home. I was released from the hospital on day seven. I was eating and drinking on day three. I was up and walking most of the day. They had to come look for me when they needed to give me meds or take vitals. They had to disarm the alarm on my monitor because I would go walk around the hospital parking lot and it would set the alarm off when I would leave the floor that I was on.

I was on a liquid diet for two weeks, then a soft diet for another two weeks and back on solid foods at 4 weeks. I was told “If you can chew it, you can eat it” by Dr. Peng. During this time, I was also on the feeding tube at nights. At 4 weeks, I was off of the feeding tube and it was removed at about 6 weeks. Dr. Peng wanted to leave it in, but Dr. Judson and I wanted it out...we won.
I started the last 4 rounds of FLOT in July and finished in early September. These 4 rounds were way worse then the surgery or the first 4 rounds of chemo. I had an allergic reaction to the Oxaliplatin during the first post surgery treatment. Had to stop treatment that day and take Benadryl. Came back the next day to finish treatment after they gave me more Benadryl before finishing the Oxaliplatin.

I developed drop foot after the next treatment, so the Oxaliplatin was stopped. It took several months, but I did regain use of my foot. My right foot is still weaker than my left foot, but I can walk normally again and can feel the pedals in my car so I can drive. Thank God!

After surgery, I was declared cancer free...you're back to being a normal person..said my oncologist.

September CT scan came back clear.

December CT scan came back clear, but showed a nodule in my lung. Nothing to worry about...I was told.

April 2023 CT scan came back with a growth in my right lung.

My oncologist and surgeon both thought it was a new lung cancer, not a recurrence of the stomach cancer. Plan was to just remove the middle lobe of my lung and the cancer would be gone. Nope...

Dr. Judson, sent me for a PET scan. Not good...along with the growth in my lung, there was a growth on my 12th rib and straddling in my chest wall. Straddling is cancer cells all throughout my chest wall.

May 4, 2023 - ASSESSMENT AND PLAN

This patient has recurrent gastric cancer. This is despite having neoadjuvant and adjuvant chemotherapy with Taxotere oxaliplatin and 5-FU also known as FLOT. He had neuropathy and allergic reaction to the oxaliplatin. He had 8 cycles so had a fair amount of Taxotere.
I think it is reasonable to treat him with FOLFIRI and nivolumab. We are sending his tumor off for next generation sequencing and it will be going to OncoExtra. We are work working on that at present.

We did discuss that this metastatic disease is rapidly progressive and not curable. I do not know how long he has to live although if he does get treated it would be several months to up to 6 months maybe. We discussed FOLFIRI and nivolumab. A consent was signed. I do think we need to try to get on top of this as best as we can although in the a.m. it is not a curable process.

Off to a thoracic surgeon for biopsies. He confirmed the PET scan results and found malignant fluid building up around my right lung. It got to the point where I was having 2 liters of fluid drained every 2-3 days.

All of my doctors were surprised at how soon and how quickly the cancer had grown back. Dr. Peng and Dr. Judson first thought it was new lung cancer and not a recurrence of the stomach cancer. Pathology proved them wrong.

I was given 3-6 months without treatment and 6 months to maybe a year with treatment. Dr. Judson jumped on it quickly and I began my new treatment of Folfiri and Opdivo in May. After 4 rounds, the fluid buildup started slowing down and only had to be drained every 7-10 days. After a few more rounds, the fluid stopped. The lower few inches of my right lung is still collapsed and will never reinflate. It's because it was collapsed for so long that the alveoli have stuck together and are stuck together like Velcro. So, I do have a little shortness of breath when I do strenuous activities, but it's getting better.

Three month PET scan...July 2023...surprised everyone again!! NO cancer!! What was there in April is gone. The treatment has killed it all. The PET scan department kept calling and texting me...you need to talk to Dr. Judson, you have significant changes. Nobody could believe that I was now NED again. I still have to do the Folfiri and Opdivo treatment forever because nobody can guarantee there are no microscopic cancer cells floating around.

I can live with that. Except for see-sawing between constipation and diarrhea...I have no other side effects. Maybe a day of slight fatigue after the steroids wear off, but I feel great and pretty much living like I did before cancer. I admit, I am not as strong as I once was and need to take breaks when doing certain things...so it takes me longer to get them done.

October 27, 2023 PET scan: All clear, still NED. Feeling good and have been doing some home renovations such as replacing windows, exterior door and resheathing our roof.

February 2, 2024 PET Scan: I was worried about this one. Both of my cancer markers, CEA and CA19-9, have been creeping up slowly. CEA jumped above the normal limit to 3.23 this week. CA19-9 bumped up another 1.6 points to 14.2, but is still in the normal range.

Thankfully, my PET scan came back clear once more. So the Folfiri and Opdvivo treatment is still working. I'm feeling great and have been doing interior renovations...hanging drywall and painting our dining room. I have also gained 12 lbs since Christmas. Back up to 162 lbs. I'm not eating any differently, so I'm kinda puzzled as why I am finally gaining weight.

February 26, 2024: During my pre-chemo appointment, I mentioned that something has changed with my tongue. I can't stick it out past me lips and it will takes work to go down, like when licking my lower lip. My oncologist ordered an immediate MRI of my brain to see if cancer has invaded the area that controls the tongue. I had the MRI at 9:00pm that evening and at 11:30pm I had the results...all clear.

UPDATE: February 26 bloodtests show my CEA has dropped from 3.82 to 3.69...still above normal. My CA 19-9 had risen from 15.9 to 17.7, still in the normal range. Still 162 lbs.

March 11, 2024: A strange happening with my tongue. I noticed that I can't stick my tongue out past my lips anymore and the right front has shrunk. It's narrower and thinner than the left side. I can lick my upper lip, but I can't lick my lower lip...my tongue won't go down. This has everyone baffled. Neuropathy?

CEA is 3.52, down from 3.69 (still high), CA-19-9 has risen to 20.6 from 17.7. Still in normal range. Weight is 164 lbs.

March 25, 2024: CA19-9 has risen again to 25.4. CEA remains at 3.52. Weight is 166 lbs. Dr. Judson is stumped as to why my cancer markers are slowly rising while my PET scan shows no cancer. I asked what happens if the markers both go above normal? Is there a 3rd line treatment? “There is no 3rd line treatment until I figure one out, so we continue on this plan as long as your scans show no cancer.” He may have another endoscopy performed if the numbers keep rising with no answers as to why. My next PET scan is due in a few weeks at the end of April.

April 8, 2024: CEA dropped to 2.53. CA19-9 rose again to 27.3. 165lbs

April 22, 2024: CEA rose to 2.90. CA19-9 now up to 32.7. 163.5lbs

May 3, 2024: PET scan today. Not the results I was looking for, but was kind of expecting to not have a clean scan because of the rising cancer marker numbers.

Focal area of activity activity in the right liver concerning for a small metastatic lesion. SUV of 5.3
Mild increased uptake in the left adrenal gland. Mild increase uptake right adrenal gland or adjacent liver.
Focal increased uptake in the central anterior tongue region .

I have an appointment with my oncologist on Monday, but it looks like another recurrence to my liver and tongue.

May 6, 2024: Met with my oncologist this morning. He is still not sure what is going on with my tongue. Says it's very rare for stomach cancer to metastisize to the tongue. Wants me to see an ENT. He ordered an MRI and biopsy of my liver along with a biopsy of my tonge by my ENT. Tongue biopsy and meeting with my ENT is this Friday May 10th at 1:00pm.

I also had the usual blood tests today. CEA dropped a little to 2.8. 165 lbs.

May 7, 2024, Treatment #26 today. Ultrasound tonight at 7:00pm. MRI is Thursday at 4:00pm. CA19-9 dropped a little to 31.9. Still in the normal range.

May 9, 2024: Chemo pump removed this morning along with blood work for Tuesday's liver biopsy at 8:00am. Had an MRI of my abdomen.

May 10, 2024: Saw my ENT today. He couldn't do a needle biopsy in office because the mass is too dense. He wants to cut out a slice under general anesthesia in the hospital. Waiting for that to be scheduled. He also wants a CT scan of my tongue.

Yesterday's MRI results show a 1.6 x 1.6cm lesion as the PET scan showed. Need to biopsy to determine if it's malignant. Biopsy scheduled for Tuesday the 14th.

May 13, 2024: Had a neck CT scan for the lump under my tongue. Have not heard from my ENT yet, but report appears to be inconclusive because of interference from fillings in my teeth. Never had this issue before.

May 14, 2024: I had the liver biopsy this morning at 8:00. Pathology should be in tomorrow or Thursday. Ablation will be scheduled once pathology results are back.

Had an echocardiogram at 12:45 this afternoon. Report shows some mild heart wall thickening and slight valve leaking (regurgitation). Heart is normal sized. Will go over this and other reports with my oncologist at my next appointment.

May 15, 2024: My Journey oncologist called this afternoon to let me know the pathology report came back and the liver lesion is a recurrence of the stomach cancer. I should hear from my thoracic surgeon to schedule a consultation to go over the ablation procedure. I have chemo next week, so unless the ablation is next Friday, I would imagine we are looking at the following week.

A sample was sent out for genetic testing again.

My oncologist also contacted a cardiologist because the echocardiogram shows decreased heart function. I am waiting to hear from him, but at this point I don't plan on doing anything about the leaking valves until they get worse or at all.

Still waiting to hear back from the ENT.

May 16, 2024: Cardiolgist office called and scheduled an appointment for June 12th.

Interventional Radiology called and set up a meeting with my thoracic surgeon for May 23rd after I get my chemo pump removed at the cancer center to go over the liver ablation procedure.

ENT wants my P*P to certify that my heart is able to withstand general anestesia. Asked if I had an EKG...no had an echo that showed leaking valves and slightly diminished heart function. Asked if I have seen a cardiologist. Not until June 12th. Has to get back to me as to whether anestesia department will put me under. Argghhh!!!

May 20, 2024: Cardiologist moved my appointment up to June 6th. Had prechemo appointment with Jaenell. She is going to call the ENT to try to get them moving. Weight is 165lbs. CEA dropped to 2.59.

May 21, 2024: Treatment #27. Chemo port acted up again and did not want to draw blood. Had to use Activase so it took an extra hour today. CA19-9 rose above normal to 40.8. A jump of 9.1 points.

May 23, 2024: Met with Dr. K., my thoracic surgeon to go over the liver ablation. It's an outpatent procedure. Just have to stay in recovery for 4 hours to watch for bleeding. He wants to do it next week or the week after...asap. He is going to talk with the anestesia department to see if there are any concerns over my echocardiogram and let me know. Still waiting on my ENT.

June3, 2024: Still 165 lbs. CEA jumped back up to 3.29 from 2.59. CA19-9 increased another 6 points to 46.8. Results from genetic testing didn't show anything new, except that my PDL-1 dropped from 40% to 10%. No trials or alternative treatment. The chemo and Opdivo, that I am already on, is the suggested treatment. Treatment #28 tomorrow. Will finally see the cardiologist on Thursday June 6th.

June 6, 2024: Met with cardiologist. He sees no issues with me going under general anestesia, but will not give consent until I have a stress test. Stress test scheduled for next Thursday June 13th. More waiting....

June 18, 2024: Treatment #29. 162.4 lbs...lost a couple of pounds. CEA dropped backed into the normal range at 2.43 from 3.29. CA19-9 stayed above normal and rose again to 53.3 from 46.8.

ENT office called and scheduled my tongue biopsy for Tuesday June 25th. Thoracic surgeon's office called shortly thereafter and scheduled my liver ablation for Wednesday June 26th. Told them about having the tongue biopsy the day before and anestesia won't put me under if I have anestesia the day before. Arghh!!

Keeping the liver ablation and rescheduling the tongue biopsy.

June 20, 2024: Rescheduled the tongue biopsy for Tuesday July 2nd. Supposed to have chemo that day, but will push it back a day or until the following week.

June 21, 2024: Rescheduled tongue biopsy for Tuesday July 2nd.

June 26, 2024: Live ablation this morning. Anestesia told me to arrive at 6:30am, but should have stayed with what the Interventional Radiology department originally said...arrive at 8:00am. Procedure is at 8:30. Arrived at 6:20...nobody around, hospital hallways are empty.

A lady shows up a few minutes later asks what we are doing there. She makes some calls and asks who told us to be there at 6:30. We wait in the waiting room until 8:00.

Robert from IR come to get me at about 8:00. Gets me changed and an IV installed. Find out the ablation machine has not arrived yet. Since this is a small hospital and only do an ablation a few times a month, they do not own their own. They have one delivered by a representative from the company when they need one. The rep is running late. He finally arrives about 10:30.

Ok, now I am taken to the ct room for a preablation ct scan to check to see if the leaion has grown or spread or if there are more lesions since it's taken almost two months to get the ok to go under general anestesia.

The scans are done quickly and I am expecting to be wheeled to the OR for the ablation. Nope...ultrasound tech come in with the ultrasaound machine. The anestesia doc has been there the whole time...I thought that was odd. I look over and there is Dr. K, my thoracic surgeon. Ok, what the heck is going on?

Seth, he is the CRNP, says the ct looked good. Dr. K then says that there is still only one lesion and it may have grown a mm, but nothing major.

Ultrasound tech starts scanning my liver and dr. K directs her to do what he needs. The anestesia doc starts prepping me. Puts whatever med into my IV and places the oxygen mask on me. "Take 5 deep breaths" he says.

Wham...next thing, I'm waking up in recovery. They did the ablation right there on the ct scan table. It's about 12:30 now. Have to stay for 4 hours after the procedure to be monitored for bleeding.

Dr. K is very happy with the ablation as he was able to get the clean margins that he wanted. He was concerned about being able to get the preferred minimal 5mm margin on the one side because of the close proximity to my gallbladder. The lesion was kind of oval shaped. He wanted a 1 cm margin all the way around. He was able to get a 5 mm margin on the side closest to my gallbladder without affecting the gallbladder in any way.

Before he started, he told us that with a 1 mm or less margin there was a 70% chance of recurrence. 1-4mm margin had a 30% chance of recurrence. 5mm or greater...ZERO chance of recurrence according to statistics.

He did have to ablate/cauterize one of the large blood vessels in the liver as it was right next to the lesion and feeding the lesion. Not an issue as there are other large arteries feeding the liver.

Dr. K must have finished the ablation around 11:30 as I was released at 3:30pm.

Other than the patch covering the incision, I feel fine. No pain at all.

Follow up with Dr. K is Friday July 5th at 1:00 after I get my chemo pump unhooked at the cancer center.

I have my next oncologist meeting on Monday July 1st at 3:15 with Dr. Judson.

July 2nd is my tongue biopsy with Dr. Chuma at Chester County Hospital.

So unless my tongue biopsy comes back malignant, I am currently NED again.

June 27, 2024: Still no pain this morning from the ablation. Ran a couple of errands, but taking it easy.

Feeling a little pain or discomfort this afternoon when I cough or am up walking. Nothing that needs any Tylenol. Other than a 1/4" slit in my side, you wouldn't know I had any procedure done. No bruising or swelling.

July 1, 2024: Pre-chemo bloodwork today. 161.3 lbs. CEA dropped slightly again to 237. Tomorrow morning I have the tongue biopsy. Arrive at hospital at 10:00am.

July 2, 2024: My CA19-9 jumped to 86.9 from 53.3. Not what I was hoping for after the liver ablation, but we'll see what it is in two weeks. Maybe it jumped up because of the ablation. Off to the hospital for my tongue biopsy.

Into OR about 1:00pm and discharged around
3:45pm. Biopsy took about 30 minutes. In recovery about an hour and a half. The pain is worse than when I had my TG. I was given Dilaudid 3 times in recovery. LIt helped, but pain is still there. Some swelling of my tongue, but not much. Follow up with ENT is July 8th. Now to wait for the pathology results.

I received a call from the cancer center while in pre-op. Oncologist is scheduling a PET scan because of my CA19-19 numbers jumping up 30 points even after the liver ablation. I was do one in August, so a month sooner.

My ENT called this evening to check on me. Pathology took a quick look at the biopsies and from what he saw while he was inside my tongue... neither see any signs of lymphoma, but he still has no idea as to what is causing the issue. He hopes the more indepth testing that pathology will be doing will give him some clues. Pathology results should be done by Monday or Tuesday.

He did tell my wife that any surgery to fix the problem is probably not going to happen because at this point he would have to remove my entire tongue. Radiation or chemo is more likely. If it's not malignant, then why chemo? Plus, I am already on chemo and immunotherapy.

Chemo and follow up with thoracic surgeon tomorrow.

July 5, 2024: Met with Dr. K for the ablation follow up visit after I had my chemo pump unhooked. Nothing new. He is happy with the outcome. He wants an MRI in October.

July 8, 2024: Went to the Willie Nelson, Jimmy Plant, Allison Krause and Bob Dylan concert last night. Six hours of sitting in 90*+ heat. I made it.

Anyway, follow up with Dr. Chuma this afternoon. He has not received the pathology on the tongue biopsy yet and has no idea of what is going on with my tongue. Hoping pathology will shed some light on what's happening. Tongue is healing fine.

The right side is numb sometimes, but burns and really hurts when I eat or talk. I have been putting Anbesol on it to numb it.

Still having problems pushing food to the back of my mouth and forming certain words, but getting better. Stitches have not dissolved yet. He wants to see me in a month.

July 9, 2024: Well today sucked!! Tongue pathology came back and it's metastasized adenocarcinoma...the freakin' stomach cancer spread to my tongue. Neither my ENT nor oncologist have heard of this happening before.

I haven't heard from my ENT yet, hopefully tomorrow. I sent the report to my oncologist and texted with him a few times. He requesting another genetic testing on the biopsy to see if there is another possible treatment. He said we will need to change treatment, but he has to sit down and figure out what to try.

Worse case is a total glossectomy...tongue removal. Although my ENT says he won't do it because of quality of life afterwards. Well, if that's what it takes to get rid of the cancer, then so be it...let's git r done.

PET scan scheduled for August 16th and a follow up MRI for the liver ablation is in October.

July 10, 2024: Received a surprise call this afternoon from the radiation department at the cancer center. Apparently, my oncologist spoke with the radiation doctor and I now have an appointment with her next Wednesday. Soooo, it looks like radiation will be the treatment for my tongue metastasis.

July 11, 2024: Not a happy camper at the moment. Recieved a call from my oncologist's office saying they were cancelling my chemo treatments until my genetic test results come back. Said because the cancer recurred to my tongue, the treatment is no longer working.

BS!!! How do they know it's not keeping the cancer at bay and from not spreading elsewhere or quicker. There was no talk of stopping treatment because it recurred to my liver. Who is to say it won't spread like wildfire without treatment?!

I'm not done with the fight, so I'll be damned if they are going to give up on me!!! We have a meeting with my oncologist tomorrow morning.

July 12, 2024: We met with my oncologist this morning. Dr. Judson is switching me to Ramucirumab (Cyramza) and Paclitaxel as a third line treatment along with radiation on my tongue.

I have a PET scan scheduled for Thursday, July 18th.

Dropped another pound. Down to 160Lbs.

July 13, 2024: CA19-9 results came in this morning. It rose another 50 points to 137.

July 17, 2024: Met with Dr. Hughes this morning. She is the radiation doc. I gained 2 lbs and back up to 162 lbs.

So here is the plan...She doesn't want to stop chemo while I am doing radiation. Instead of radiation every day for 5-7 weeks, radiation will be twice a day for two days. I will have radiation in the morning and then return in 6 hours for another dose for two days straight. Then 3 weeks off.

At that time, I will be re-evaluated and another round of radiation will be done if needed. I can do this 4 times...up to 16 treatments.Radiation will not eliminate the cancer, but is intended to shrink the tumor and alleviate the pain and hopefully, restore function to my tongue. It will be up to the new chemo treatment if the cancer is eradicated.

This won't start for a few more weeks as I have to have a dental check up and cleaningbefore she will do the radiation. This is because the radiation will affect my jaw bone making any dental work afterwards almost impossible as my jaw can become brittle and healing takes longer. I have a dental appointment tomorrow afternoon after my PET scan.

It will also take 7-10 days to make the mask that will hold my head steady during treatment.

She will look at tomorrow's PET scan to set-up the machine to pinpoint the area of my tongue to target.

So I am not expecting this to begin until the beginning of August.

July 18, 2024: A busy day...10:30 PET scan, then 4:00pm dentist appointment. PET scan showed the tumor in my tongue at 1.7cm x 1.7cm. Also shows a possible metastasis to both adrenal glands. Will have talk this over with my oncologist.

Dentis says I need two teeth pulled along with some roots that were left behind when I had my upper dentures made. Two teeth need to be drilled and filled. This will happen August 5th & 6th after we get back from vacation. Have to let the radiation doctor know so she can pln on when she wants to make the mask.

Had a call from palliative care while heading to the PET scan this morning. They will call back.

Heading out in the morning for a week long camping trip. Will deal with this after we get back.

July 31, 2024: I had my new chemo education today with Maray. Weight is 162lbs. All bloodwork came back fine.

Not so great news. Something with the Ramicurimab and Paclitaxel and possible bleeding and fear of infection...since I am having teeth pulled next week which is a few days after treatment, Dr. Judson has postponed beginning this regimen another 3 weeks until August 22. That will be seven weeks with no chemo...I'm not thrilled. Recurrence was discovered on May 3rd and still haven't started the radiation or new chemo. Four months of waiting for tests and procedures and having to get teeth pulled because of the radiation is holding everything up.

August 1, 2024: CA19-9 is stable at 135. It was 137 two weeks ago. I take this as good news, that the tongue cancer or whatever is on my adrenal glands is not spreading.

August 5, 2024: Had two molars and five roots pulled today. This hurts worse than when I had my TG. Tylenol with codeine doesn't fully take the pain away. Tomorrow is another appointment to get some teeth drilled and filled.

August 6, 2024: Pain is miraculously gone from yesterday's teeth removal. Had five teeth drilled and filled.

August 7, 2024: Jaw hurts again from getting the teeth pulled. Tyleno takes care of it.

We met with Dr. Arbot with palliative care at Wellspan at noon today. I really like him. Like Dr. Judson, he says that I call the shots. We seem to be on the same page and is proactive. He is looking into a second opinion wih Johns Hopkins or another place about possibly having surgery on my tongue. Gave me more Tylenol w/codeine just incase. Ohhhhh...I like him. lol

Asked about the family and said they are included in palliative care if they need any support. I like that as I feel being a caregiver is just as tough as being the patient...even moreso.

Jodi from radiation called and said tha she was in contact wih the dentist, but needed to clarify something. Dentist said that I was good to go as long as no bone is exposed. If all goes as she thinks, they will make my mask next week.

August 9, 2024: Jaw pain has gotten worse so my wife called the dentist. Diagnosis is dry socket for the two molars and one root that was pulled on Monday. He roughed up the exposed jawbone to make it bleed to form another clot and then placed caps before suturing the gum to pull it over the bone. I think he should have stitched the openings closed to begin with on Monday. At least that's what other dentists have done it in the past.

He sent me home with Amoxicillin just in case.

August 12, 2024: Radiation called today and I wil be having a ct scan and they will make the mask on Friday. Things are finally moving forward.

August 14, 2024: Palliative care nurse called today and said that she put in an order this morning for a second opinion at on my tongue at Johns Hopkins. Expect a call directly from them and to call her if I do not hear from them by Monday.

Jaw pain is almost gone...finally. Now if my tongue would stop hurting...

August 16, 2024: Had the radiation mask made this morning. I checked my weight. Still holding at 160lbs. Chemo starts next week.

August 20, 2024: Had prechemo appointment with my oncologist this morning. Weight is 161lbs.

Asked him about the mention of adrenal glands and neck lymph nodes in my last PET scan. We asked what was next step to determine if they are malignant or not. Biopsies?

Just the chemo...assuming it has metastasized to those areas now. No testing. Would have been nice if someone had thought this was important enough to go over it with me sooner without me having to ask about it. Not thrilled with some things lately.

I said that the Tylenol with codeine didn't do anyhting to take the pain away when it shoots up my neck into my head. Dr. Judson spoke with Dr. Ambort in palliative care. Dr. Ambort prescribed liquid morphine.

Had my magnesium (1.8) and B12 (683) tested along with the usually blood tests. All are normal. My CA19-9 cancer marker rose from 135 to 215. Not good, but chemo starts Thursda and hopefully will knock it back down.

August 21, 2024: Dentist follow up. All looks good and healing. Radiation is a go.

Back to having to take Decadron (Dexamethasone) the day before chemo. Had to take 5 of them tonight at 9:30pm (12 hrs before chemo starts). Next week I only have to take 3. 🤷‍♂️

August 22, 2024: Had my first PAC/RAM treatment this morning. No side effects so far. Fell asleep during the last two hours of treatment. Either the Benadryl counteracted the steroids or only getting 3 hours of sleep last night finally hit me. treatment was about 3 hrs.

August 23, 2024: Had the first new chemo treatment yesterday and I see results already. I can eat and talk without pain in my tongue. I noticed this last night. I can also move my tongue more. The lymph nodes under my jaw have shrunk to half the size they were yesterday.

Radiation called today to schedule radiation for next week, but I'm questioning whether we should hold off another two weeks until my off week of chemo instead of interrupting treatment this early.

Radiation doc and my oncologist are going to talk it over and let me know what they think, but it seems my oncologist is thinking like I am and keep going with chemo.

August 25, 2024: Felt fine for the last three days, but today just felt out of it and tired. I call it chemo crash. Tongue hurt this afternoon while eating at get together that we attended. Some chest pain also. Ramucirumab side effect? Oh, slight constipation. Didn't feel constipated, just no urge to go. Had BM Saturday night. First since Thursday.

Should hear from oncologist and radiation doctor tomorrow as to whether it's chemo or radiation this week.

August 26, 2024: Radiation tomorrow morning sto at 8:45 and then back again in the afternoon for the second treatment. Still not totally in agreement to stop chemo. Seems the decision was more based on me having to go on Medicare and having to get new approvals than logic.

August 27, 2024: Had radiation treatment #1 this morning and have to go back at 3:30 for the second. #3 & #4 are tomorrow.

August 28, 2024: One cycle of 4 radiation treatments finished. Two yesterday and two today. Another cycle of 4 treatments in 3-4 weeks. Follow up is September 19th.

August 29, 2024: The pain in my neck that goes up into the right side of head is back. My tongue hurts a little, but not bad.