Kamoto
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Posts posted by Kamoto
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Brain, right rib bone, back and lymph nodes. All gone except the lung mass which is probably there but extinct.
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So went to dermatologist. You won’t believe this. I have a 3rd distinct cancer. Basal cell skin cancer. They want to cut the rest out, but I said no cutting until the oncologist says it’s fine. I see him Monday. Wonder if he will allow it.
Stage IV Lung
Stage II Esophagus
Basal Cell Skin
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Yet to see oncologist, as driving over there is a nuisance. I finally had some dental work done. I’ll go in the new year. I’m less worried about the scalp issue. I think my Tagrisso is affecting the healing of anything. I sharpened my knives for the holidays, and cut two of my fingers. The dam cuts won’t heal either. I was squeezing lemon juice into my apple pie mixture, and it burned like heck. I think I’ll call the pharmacist for Tagrisso and ask her what to do. Merry Christmas to everyone.
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I had my chest and abdomen CT scan last week, and no evidence of disease. However, I have a sore on top of my head which bleeds daily and hasn’t healed for almost a month now. I see Oncologist next week, but was wondering if anyone had this metastatis. I’m guessing this is a symptom which will necessitate a PET scan. Seems 19% of Stage IV NSCLC jump to scalp.
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Before you go down any "surgery" or "Chemo/Radiation" road, think about whether you want to confirm your Oncologists treatment plan with one of the nationally recognized cancer centers (IE, MD Anderson Houston, Mayo in Minnesota, Denver Jewish in Colorado, etc). A hospital Oncologist has to treat every cancer which comes through their door, whereas the national centers have specialists who ONLY deal with lung cancer. I'll vouch for Mayo Clinic, who did my esophageal ultrasound and mapped out where the cancer was so the local hospital could zap it with precision radiation.
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I see that peritoneum tumors can also induce nausea. These are on the inside of stomach. I guess this could be my 1st symptom which could prompt oncologist to order the PET scan. He said no PET scan without a symptom. I also see that brain tumors can induce nausea. I’ve had a brain met,from the lung cancer, so who know if it’s come back. Let’s see what scans say in a few weeks and I’ll discuss with oncologist
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Hi All. Winter has hit in Montana. But I’m experiencing something odd. I’m having morning dry heaves like I had post chemo. Since April of 2023 I’ve been fine, gaining weight enjoying the summer, then wham, it’s like I’m having chemo again. My daughter who is an RN says it’s likely PTSD. Anyone else have this ten months after the end of chemo? I have a scan in a few weeks, so I’ll tell Doc about this new issue, but wondering if others have psychosomatic remembrances of the toughest time in their lives. Hope everyone is well.
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Thanks all. Well, I’m no Oncologist. He looked at me like I’m nuts. He said the mass they see on the left lung area is right where they were zapping the esophagus tumor. It’s a byproduct of the radiation and yes it grew, because the scan they did in January was right after radiation ended. So he told me I don’t have any new tumors. He also said the original lung cancer mass may be dead tissue. The only way to determine if that is still cancer is via PET scan and there is zero reason to order one. Until I have symptom which worries him, he isn’t worried about that Mass right now.
was also interesting in that he said the esophagus cancer may come back. Yes it was stage II, but it might have entered the blood stream before they killed it. So have to monitor that. So all in all, I’m going to live for now and Tagrisso resistance isn’t here yet. I failed as an oncologist. So thankful for all the support
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Thanks Lou. Hi Karen. Sure let me know what you can dig up. I meet with oncologist on Monday to see what his plan is. Kindly
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My main tumor in the right lung has shrunk 80% but is no longer shrinking. In fact, it has widened by .03 Cm. I also have something growing in the left lung. 3.2 by 3.7 Cm now. Rest of the chest area is still clean. Appt with oncologist on Monday, but looks like Tagrisso is barely holding off the inevitable advance. Oh well, maybe a new drug, but I like the zero side effects with Tagrisso. I’ll advise what oncologist plan is
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Yikes. i have zero side effects at 80MG. i had a pencil eraser brain met, and tagrisso whacked that within six months. i'd be afraid of my heart at such a high dose. who is your 2nd opinion center? i use Mayo Clinic in Rochester MN and they agreed with my local cancer centers plan for 80MG. My Montana oncologist was on the team at Denver Jewish hospital which helped get Tagrisso approved. Be careful with Oncologists who want to toxic dose you. the repercussions can be worse than the hoped for cure.
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I wouldnt go past 80mg. just because you increase the dose doesn't mean you accelerate the reduction or removal of tumors. my brain tumor was the size of a pencil head, and within six months was gone on 80MG. my lung is reduced by about 80% and i'll now more on tuesday as i have a scan scheduled. Tagrisso can have some serious side effects. If she tolerates the 80mg does well, as I do, stay with that. i have zero side effects. I wouldn't want the heart issues which could come with a higher dose.
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He just started. I sure do hope that when he hits his bottom, you don't stick to this no sugar nothing good diet. i wanted to be able to taste. i was getting only 400 calories a day, and a box of sweet tarts may have helped me stay alive. sometimes my only tolerable food was a McDonalds Filet o Fish. he will need anything he can tolerate. Being naturopathic while battling chemo radiation sounds good, but staying alive is more important. Tread lightly down this road.
- BridgetO, LovingWife, Tom Galli and 1 other
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Soon as I discussed with Homeopathic Doc, I turned the corner. So I never used her services. Thanks to Jimmy John turkey sandwiches with provolone cheese. Since the Feb 14th post, it is now April 24th, I've put back ten pounds. Once my taste buds returned, it was nice to be able to eat half a package of Chips A'Hoy with zero guilt. Anything to put pounds back on was welcomed. Going to sleep and feeling your skin stretching over your ribs was an uneasy feeling. So to all those who think the residual effects of chemo/radiation last forever, hang in there. Deadened senses when they are reawakening can be brutal to deal with. Just takes time, and eventually you will back. Would I do it again if the targeted drug stops working? No way in hell. That is suffering I wouldn't wish on anyone and I can't do it again. I'm like the people in Naked and Afraid who just get broken down mentally. As someone who had zero illnesses for 57 years, I'm not equipped to deal with health struggles 🙂
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I'm on ten months of targeted therapy. Tagrisso. I'm in the treatable camp, for the lung cancer, and the cure camp for my esophagus cancer. Tagrisso will hopefully treat me for about 3 years before the smart cancer figures out a way around the medicine. If that happens, I'll need a new drug. If the drugs don't work, I refuse chemo radiation as that crap nearly killed me curing the esophagus cancer. Mind over body. Who is in control, the cancer or you? Don't let it define you, and live as long as possible with the advances in modern medicine.
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Dublin CA? Hah, I spent the past 20 years living in East Dublin near Dougherty Elementary. I moved to Bozeman MT to escape the crazy lockdowns of the pandemic. My chemo/radiation trips to Bozeman Health were only 15 mins and six miles away. I can't imagine driving over the bridge every day to get to Stanford from Dublin.
I have to add, your a trooper to go through chemo at 75. The ONLY reason I did chemo/radiation was I would eventually choke to death with no warning that it was about to happen (Stage II Esophagus and Stage IV Lung). Stupid chemo nearly killed me at 58. If I didn't have a forty pound stomach I likely would have been a goner. If the stupid lung cancer requires chemo/radiation the answer from me would be no. I'm one and done with that toxicity. So good on you for going through it at 75. I'm impressed.
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Karen speaks the truth. My oncologist was on the team who trialed Tagrisso while he was w Denver's Jewish Hospital. His initial speculation was EGRF mutation and it most certainly was. But when I informed him that I was getting a 2nd opinion from Mayo Clinic in Rochest MN, he welcomed it, as he was having to deal with every cancer as the single oncologist here in Bozeman MT. He told me he couldn't keep up with advances in Lung, but that Mayo has probably fifteen specialist who only deal with lung. Mayo Clinic agreed to his entire treatment plan, and offered nothing else they would recommend. Why won't they do a biopsy? My lung tumor on CT scan was 3.5 MM and they ordered a biopsy. Once they determined EGFR mutation and malignant, they ordered the PET scan, which I lit up and they staged me at Stage IV with mets on the rib, brain, and back, as well as a seperate Stage II esophagus cancer. People say US Medicine is terrible, but when you have corporate insurance, US Medicine is best in class. Get the 2nd opinion in Germany or if you can afford it, fly into Mayo Clinic in Rochester MN who is setup for international patients.
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HI BBTN. Have you ever read or watched "The Secret". Universe's law of attraction. I've practiced this my whole life, and when cancer struck, I couldn't have cared less. It was just something life throws at you. Stay positive, keep a clear mind when dealing with doctors, and spend energy on productive things. By doing this, every single nurse and doctor I've come across wants to fight cancer for me. At week five of chemo, I was ready to give up, but the Oncologist who I trusted told me he is curing me, not treating me. I brought gifts during Christmas for the chemo staff, as well as the Oncology staff. I was never toxic to anyone, and by being a nice person, I was rewarded with their energies to fight for me. I may be an outlier, and human tendency is to lash out when severely sick, but keep a positive attitude and it will serve you well. I beat esophagus cancer, and currently beating Stage IV lung (last tumor is in the lung but reduced by 70%). Screw cancer. LOL
New Symptoms (Myositis/Rhabdomyolysis) developing from Tagrisso possibly
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Noticed my hands are weak when I pick up my laptop, and even just getting the IPAD while in bed off the nightstand, the IPAD feels really heavy. Been dealing with cramps in the feet while watching TV, and tried to increase my Gatorade intake. Seems to help a bit, but I'm still constantly peeing as well. Today, while working from Starbucks, developed a bad cramp in the back of the leg in thigh area. Although I'm 60, the muscle stiffness seems to be rather pronounced for my age. Rare side effects of Tagrisso are Myositis with Inclusion Body Myositis being of particular concern. This in turn, can cause Rhabdomyolysis, which Rhabdomyolysis causes your muscles to break down and deteriorate. This makes components of your muscles leak into your circulation system (blood). I'll talk to the Doctor, as my normal comprehensive blood panel doesn't screen for Creatinine Kinase, Myoglobin and Urate. Elevated levels of these in the blood would give me some answers to what I'm experiencing. For those not in the know, I'm two years on Tagrisso for NSCLC (Stage IV), and these symptoms began a few months ago. Can't afford for Tagrisso to deteriorate my golf game.