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Adenocarcinoma - newly diagnosed
Hello. I am new to this group. Thank you in advance for any guidance and or support you have to offer. I have been diagnosed with adenocarcinoma of the upper right lung. Have had a bronchocoscopy, x-rays, CT and lung biopsy - which determined the diagnosis. I have an appointment this Tuesday for a PET scan to determine staging, and a breathing test will follow. The only symptom I have had is hoarseness in my voice. Otherwise I feel fine. I am simply terrified and still in shock.
Pixiedust
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Wow, it sounds like everything has been falling into place so far. MD Anderson would be ideal.
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1 ReactionIt will be if necessary. We will know more after Monday.
Been there done that. A nurse at Mayo Clinic suggested I rinse my mouth with !/2 teaspoon baking soda and 1\4 teaspoons salt with warm water. Never got mouth sores but throwing up was frequent daily for 5-10 days. Wore baseball hat with hair loss. It comes back. Maybe not same but mine was a little curly. Stick with Dr. You like believe me it’s worth it.
Prayers and good luck.
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2 ReactionsMy chemo hasn’t started yet, but I’ve been prescribed meds to combat nausea. Decamethasone 2x the day before chemo and 2 a day for 3 days starting the day after chemo. Also ondansetron and prochlorperazine as needed for nausea. My chemo
starts Apr 26, so no idea what to expect. I’ve read that ice chips during chemo infusion helps reduce mouth sores, but I have no experience with that. Good luck. I’m grateful for this group.
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2 ReactionsHas anyone tried Enterade for side effects of chemo and rad? I keep seeing ads for it - appears to cost $60 for 12 bottles...just curious!
Thanks
Sandy
Hi Sandy,
I was diagnosed with NSCLC one year before you(Feb 2022). Mine was stage 3B. I couldn't have surgery because it had spread from the lung tumor into two lymph nodes, one Hilar node and one Mediastinal node. But I did have radiation and chemo similar to your plan. The radiation I had was proton radiation though instead of photon radiation(x-rays). If that is an option for you I definitely would recommend it.
I had 6 weeks of radiation 5 days per week and 6 weeks of chemo 1 day per week over the same 6 week period. My chemo was same as yours, Carboplatin and Paclitaxel. You have to infuse the Paclitaxel first before the Carboplatin but they will know that. The first time I had a bad reaction immediately to the Paclitaxel. They had to stop it and give me some other meds and wait for 45 minutes so I could tolerate it and then it proceeded OK after that. The meds were just stuff like benadryl, famotidine, some steroid and Tylenol. For the following weeks they would just give me that stuff first and the whole series went well.
For side effects I was pretty lucky. They gave me prescriptions for anti-nausea drugs, Odansetron and Prochlorperazine, but I did not take any since I didn't get nauseated enough. They gave me quite a few sample bottles of Boost and Ensure in case I had trouble swallowing because of the esophagus reaction but I didn't have very much trouble with that either. I was able to eat chew-food the whole time. I did have fatigue from the chemo and a vague feeling that I wasn't "normal" during the whole six weeks and beyond but that fades away.
I did get an area of "sunburn" on my back in the later weeks of the radiation treatment since about two thirds of my radiation came in through the back and one third through the front. I couldn't reach it well but the techs here would put lotion on it for me so that wasn't too bad either and it faded over a few weeks after the radiation was over.
I did not lose my hair. I might have had more thinning but it was thinning before anyhow. It was impossible to tell if the thinning trajectory changed at all. I didn't try doing anything about hair so I am no help there.
I just finished one year of immunotherapy. Just a one hour infusion every four weeks. This drug was targeting my specific cancer genetic mutation and was much easier to tolerate than chemo. Just some fatigue which I hope will start fading away pretty soon.
During this last year I did lose my gallbladder but that was probably completely unrelated to the cancer or treatment. I also lost most or all of my thyroid gland function and that was caused by my immunotherapy drug. This happens to about 20 percent of patients taking that drug and I was one of them. In the big picture that is a small price to pay for the cancer killing protection of the immunotherapy.
Now I am all done with therapy and just have followup CT scans. These followup CT scans become extremely important to cancer patients. That is the only way you learn what good and what bad is going on inside you.
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1 ReactionHi nonobaddog, as I sit here hysterical reading your message, it means so much to me to hear from you and how similar we are on this wretched road. Just having a really bad day today - just found out how much radiation and chemo will cost, so working to possibly get my insurance plan changed. Not only do we have to battle cancer, but all of the nonsense and monetary outlay that goes with it. Please tell me how people stay so positive throughout this? The onco and surgeon have still not ruled out surgery, but I'm not convinced it will happen, especially since I'm 77. I was curious about where they would target the radiation - front or back, but you had both? Did you have a port put in for the Chemo? My onco says I may not need one if they can get the vein - I figure I've got 2 arms and 2 hands they can look for veins without having to go thru surgery to have a port put in 🙁 I will also be on immunotherapy but not sure if onco mentioned after the chemo & radiation or after the surgery...I also have thyroid issues - had the left lobe removed about 50 years ago, so being on medication for life was no big deal for me. I'm so happy you are through it all and having your f/u CT scans. And thanks so much for sharing with me...you def made me feel better! (p.s. assume you have a dog? we have a little toy fox terrier named Pixie..she is now 12 and I swear she knows I have cancer)!
Hi Sandy,
I am 74 and I was hoping they could do surgery and remove this cancer. They didn't tell me my age was a problem but because of the involvement of the Mediastinal lymph node they said the surgery outcome isn't that great. That node is close to the spine so maybe that is why.
With the radiation, the beam does damage some good tissue on its way to the target tumor so they use beams from multiple angles that all meet at the target. That way is does most of the damage to the tumor and spreads out the damage to the good tissue which can then recover. There are also sensitive tissues that they have to avoid so they choose the angles carefully. I only had 3 angles but I heard of quite a few more. It seemed that the proton radiation used fewer angles than the photon radiation. The machines that do the radiation are pretty big and impressive.
I did not have a port put in, they just used my veins and I was happy about that. In total there were 6 sticks for chemo and 13 sticks for immunotherapy but these were spread out over 14 months so that wasn't bad.
I wish I had a dog but I do not and I sure miss that. When my last one passed away a few years ago I decided not to get another one. That might have been a poor decision. I do get to see my son's dog pretty often so that helps.
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3 ReactionsThanks again...you are inspirational to me! Somehow you make it seem not quite so bad (in the scheme of things)! I so appreciate your understanding and caring. I hope I can get through this as well as you seem to have! (attached is our little Pixie girl - of course she was younger in this picture, but you can get the idea)!
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1 ReactionMy case was similar. I had a mass in my upper right lobe that had spread to one nearby lymph node. I had the same chemo drugs you mention, but I had radiation simultaneously as my Oncologist felt the chemo would be more effective that way. Both at once definitely made me tired, but I never missed a day at work. 🙂
Enterade appears to help with diarrhea, but that wasn't my reaction. I took Metamucil 3 days before chemo and continued afterward for a couple more days, which worked for me.
I did not have mouth sores. My hair did not fall out. Like Franciekid, I took Dexamethasone 2 days before and 2 days after, plus I noticed that the first bag they used during chemo was more Dexamethasone. No problem with nausea.
I did have the surgery and was cancer-free for two years. Then it came back, but that's another story. To end on a positive note: after the second surgery, I've been cancer-free for two and a half years! Good luck, and you're right, one day at a time.
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