Kamoto

Blood test was pretty bad. About five things were high or low. I’m anemic and possibly have an infection. Could explain why I feel awful.

Oh if you wanted some mystic spirituality, head up to Sedona. The red rocks have magical powers.

Getting ready for my CT scan today. I’m still miserable, see my update in chemo forum. But hoping to be cancer free in the esophagus. I’ve missed about three Tagrisso pills as I was just too sick to swallow them. Arizona is home to one of the finest hospitals in the country my Irish friend. Mayo Clinic has a big operation in Scottsdale on the Fountain Hills border. They also opened a new hospital in North Phoenix on the Scottsdale border. They have a proton therapy center there so all state of the art. Not as good as Mayo in Rochester, but pretty close. Feb and march are gorgeous in the desert.

Hi All, so I’m almost five weeks post my last radiation treatment. I’m still dealing with daily wretching, vomiting at times. I started to be able to eat some things, and once I did, I no longer throw up yellow bile. But if a certain smell hits me, there I go wretching. the biggest problem is the smell of my feces. It is beyond bad. What could be causing it? My daughter says bacteria causes this smell. Is this from the esophagus repairing itself, chemo damage, anyone had this problem. I’m doing a CT scan today and meet w oncologist tomorrow to see if esophagus tumor is gone. But I still fell like cramp and see no end to my misery thanks

Wow Judy and Lily, we had the same reactions. To avoid Monday, I did two on Friday. Slowly recovering now, but the dam dry heaves in the morning are draining. So glad I have many CDs of 70s shows I watch all day while resting. I’m 6 Ft and my weight has gone down to 164 from 197. I look malnourished but the Dr says I came in healthy so the weight loss isn’t an issue. I take baths now versus showers as I can’t stand for long periods of time. My Christmas prime rib came out fantastic, but I can’t stomach meat at all right now. Happy Holidays to all on this forum

Had to get forced into hospital by my daughter for hydration. I was miserable. Had two days of hydration which helped immensely. Last two days of radiation are here. Radiologist insists I finish. I loathe him but appreciate his forcefulness. Food taste is coming back as I’m 1.5 weeks off chemo. But this better not come back, as I’m one and done for chemo.

Thanks for the encouragement. I was in the waiting room the other day and a stem cell replacement patient was there. Poor guy had seven months of chemo and countless replacement therapy cycles. I got a sense of my pain isn’t nearly as bad so mind over matter. Two weeks in now, no hair loss and swallowing is fine. As you say, five weeks of hell for years of health. I’m trying, just had a mental meltdown. Love everyone’s encouragement. Kindly

To not choke from the esophagus cancer, I started chemo on Monday. The dry heave, excessive smells, low food taste are wearing on me one week in. Not sure this is worth it. Five weeks of this to ruin my Thanksgiving And Christmas. What if I don’t get another holiday shot. lung cancer with tagrissso and this one are wearing me down. Sorry to be so pessimistic but I don’t deal with being I’ll well. Kindly

Wow Robert so sorry to hear. I’m on chemo for my esophagus cancer w the lung cancer in remission. But I’m not a fan of chemo and want to stop. If my stage 4 lung is going to come rearing back, I question the point of chemo. Hang in there

Lung tumor has shrunk from 2.5 x 2.1 cm to 1.6 x 1.4 cm. Minimal activity on brain tumor so that is basically gone. Left rib tumor gone. Spinal tumor gone. I believe the esophageal tumor is gone as well but need oncologist confirm. All the paratracheal and hilar adenopathy is done. So astra zeneca is a life saver.

Go to Moffitt right in Tampa for an urgent 2nd opinion. https://moffitt.org

Thanks all. I could never be on a Keto diet. My sweet tarts and sugar baby candy are calling me from the cupboard. And the sonic burger commercials were making me nuts. Lol

As many know I’ve been on Tagrisso since July 4th. Tomorrow I’ll know if tumors are gone or reduced. Especially hoping the esophagus is the same cancer and Tagrisso has shrunk that. Otherwise I have to consider chemo radiation. Yuck. Now I sit without anything good to eat for 24 hours.

None of this makes sense to me. Stage IV and they did brain surgery? I have a pencil eraser sized tumor on my brain, and Bozeman MT health system as well as Mayo Clinic In MN both said they wouldn’t touch the brain tumor. Is it true that there is no bio marker? Didn’t know that could be possible. What hospital system are you at? There is a great cancer center in FL. I’d go there pronto. Surgery with stage four is bad. You flood the blood system with cancer cells and potentially wake up dormant cancer cells waiting on organs with no evidence of disease.

Thanks Michelle/Judy. I'm a fan of Indica, which makes you sit on the couch like a log and I usually get the munchies. Maybe I'll pick up some gummies this week. I also with experimentation figured out in no way shape or form can I skip the anti diarrhea medicine. If I do that, it takes me a few days to regain control. I take Morphine twice a week which helps with digestion and ensuring no diarrhea. I take my anti diarrhea medicine and Tagrisso at night. Even my nose acne has gone away, so I'm at zero side effects. Who do I kiss at Astra Zeneca? LOL

I’ve always enjoyed cookies, cake and other unhealthy snacks, but no matter how much I eat these days, I’m dropping weight. About 2 lbs a week. Since may I’m down about 10 lbs. I’m 6 ft, 187 which is close to ideal weight, but I know the doctors won’t like this weight loss. On hold for the chemo radiation as radiologist wants to see if the esophagus tumor has miraculously shrunk on Tagrisso. Since I have zero swallowing issues, he isn’t in a hurry. Now I wait for the next PET scan.

I agree with Bridget on the 2nd opinion. Did they do an echo cardiogram as a baseline before she started taking Gefinitib? The baseline would absolutely give them an idea as to whether the medication is causing this. I wasn't able to start on Tagrisso without the baseline echo cardiogram. Are you wealthy? Take a trip to the Mayo Clinic in Minnesota if you are. They accommodate international visitors with a plethora of hotel rooms. Do you get better care if you to London? I live in Montana, and the expertise in lung cancer just isn't present here. The Oncologist is more a generalist. Try to find the best lung cancer specialist in the UK if that is possible. Otherwise use your cash to visit the Mayo Clinic.

Hi Mike. Are you going to memorial Sloane Kettering? If not, maybe get a 2nd opinion from them. I’m not a Dr. I just don’t understand starting with chemo when you don’t know your mutation type. This is one of the must haves that the mods on this board will tell you is essential. Can you find out for us if you know your mutation. I’d hate for you to be in such misery when easier solutions are available. My Tagrisso is targeted. Will only kill egfr cells. My rib and spine tumors seems to be reduced or gone in three weeks w no effects from the drug. So I wouldn’t say medicine hasn’t advanced. It has significantly. Even radiation has, which is proton therapy but that isn’t available everywhere

Medicare reimburses nearly all of the 16,600 per month Tagrisso target therapy drugs cost. So denying a round of chemo, which is cheap in comparison, doesn't sound right. Take Toms advise.

Why chemotherapy? You didn't say whether is was Non Small Cell or whether is was Small Cell. Maybe you have small cell thus the chemo right away. Is the lung cancer a certain mutation? Mine is EGFR. So for Stage IV NSCLC with EGFR, I take targeted therapy which is Tagrisso. Zero effects from this drug for the most part. So I'm curious as to why you are on chemo. My lung is the primary tumor, with spots on the brain, spine, ribs.

Not sure if this is noted or buried within another thread, but this was important 1) Pick a hotel around the Mayo Campus 2) There has to be 20 or so very nice hotels. Doubletree was great, good italian restaurant on the 1st floor 3) Fly to Rochester. If the Rochester flight is canceled, gets others to split an uber down to rochester from minneapolis. 40 each. 90 minute uber ride. 3) Walk to Mayo for your appt 4) Note the valet desk on the 1st floor of every building 5) When you checkin for surgery, give the valet as your pickup. 6) when done with surgery, you can get a wheelchair down to valet, or walk yourself. I walked 7) Checkin with valet, call your hotel shuttle, and the hotel picks you up.

Doubletree was a great hotel. Good Italian restaurant on the 1st floor. Lobster Bique and Soy Glazed blackened cod for dinner. Their bread is amazing. Was about a five minute walk over to Gorda building. Checkin, pre-op were all the same as any hospital. But when they wheel you into the room, holy heck batman, what are all these machines. Stryker Corp devices, Seimens devices, monitors everywhere, the operating room was impressive. Mayo is a bit slow to take you into OR though. So the Dr staged my esophagus cancer at stage II. Met with Esophageal cancer doctor today via video, and he said no surgery. Not when another Stage IV cancer which I have in the lung is present. I would likely not survive this demanding surgery. I also talked to them about a difference between Japan (gastroectomy) and US (esophagectomy) and she told me Japan is unique with esophagus cancer in that it is environmental there. She mentioned the diet, and also very hot beverages. Come to think of it, I like my Caffe Mocha at 180 degrees. Wonder if this is my esophageal cancer trigger. So they recommend Radiation/Chemo. Carboplatin and Paclitaxcel. They are discussing the fact that I'm on Tagrisso. Dr. said if I stop Tagrisso while doing the chemo, I could get rebound cancer. So they want to make sure the three drugs in conjunction won't kill me. I don't think I'm a candidate for Proton Therapy since no surgery will be involved here. Radiation at Mayo has to answer that though. All the Mayo Doctors are rock stars. Many haven't even gone to med school in the US. Mayo pulls them in, and they redo their med boards here in the US. So these are some of the brightest the world has to offer. I feel bad for other countries. But these Doctors come here and do so much research as well. My esophageal cancer doctor has over 200 medical oncology citations in professional journals.

Thanks Susanrae. Mayo makes this easy. Each building has a valet. No need to check in with the valet when you arrive. Tell your nurse that the valet is your pickup. They will note it. You can take a wheelchair down to the valet, or walk down on your own. Valet will call the hotel if they have a shuttle, in my case the doubletree. But thanks for offering, I was stressing about this.

I go to Mayo on Sat. I’ll have an endoscopic ultrasound. Anyone at Mayo on Monday want to be my pickup? The ultrasound will let the esophagus cancer doc know how to deal with it. I meet him on wed and fly back to MT on Thursday. Not looking forward to entering an airport. Total chaos these days.

Thanks Karen. The Mayo oncologist is a rock star. She has 200+ medical journal citations. Her specialty is lung, so she is gathering some more data to present me to their weekly meetings, and get Esophagus expert opinions. Mayo doesn't do anything half *ss. I like that in them.