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So appreciate your encouragement and feedback last time I posted! I'm a 46-year-old Chinese American woman with no smoking history, diagnosed with Stage IV lung cancer on 1/22/2024, started chemo and Tagrisso on 2/6/2024. I completed 4 rounds of chemo and continue to take Tagrisso and just did MRI and PET scans. Brain MRI showed the met is gone. Other MRIs show some abnormalities in my spinal cord and bones are showing improvement. My PET scan showed decreased but still metabolic activity (SUV) above 2.5 in two bone spots. Primary lung mass is now below SUV of 2. I was disappointed that there is still active cancer in my body after chemo and Tagrisso. I'm hoping that I wouldn't need radiation. My doctor said the scans are all good news, but it's very rare for someone in my stage to ever be cancer free. I re-read Radical Remission about radically changing diets, to eliminate meat, dairy, refined carbs, sugar, leaving only organic fruits, vegetables, beans, seeds, whole grain. I didn't follow that during chemo because I needed nutrition to get through chemo. Now I really want to get some advice on diet. A troublesome side effect I'm experiencing is diarrhea. Most days it's loose stool once a day, but sometimes it's frequent diarrhea, likely caused by certain foods. My worry is that my body isn't absorbing nutrients that I tried so hard to get down even though I don't have much of an appetite, and I would like to treat it naturally before starting to take Imodium all the time. Would so appreciate your advice!

Two years in with that diagnosis. Tagrisso for two years now. That stuff works fast. I didn't do any radiation//chemo for lung cancer. Mayo Clinic in Rochester MN also did not prescribe radiation/chemo. I had mets in the brain, rib and back. You wouldn't even know I had cancer, except when I nearly died from Chemo/Radiation from a seperate cancer I had in the Esophagus which was Stage II. Lucky me to have Stage IV Lung and Stage II esophagus.

Thank you for your feedback last time! I finished four rounds of chemo and it’s been three months since I started treatment for Stage IV lung cancer (chemo and Tagrisso). I just completed MRI and PET scans. Brain MRI showed the met is gone. Other MRIs show some abnormalities in my spinal cord and bones are showing improvement. My PET scan showed decreased but still metabolic activity in lung and pelvis. Is this expected? I was disappointed that there is still active cancer in my body after chemo and hoping that I wouldn’t have to do radiation.

Sherry, Welcome here. My severe joint pain was due to Taxol and Carboplatin-infused chemotherapy. The side effect occurred like clockwork starting about 24 hours after infusion and lasting 2 days. Then things would return to normal. Like you, I could hardly walk at all and when I did, I suffered great pain. Nothing, even narcotic medication, relieved this side effect. I had a total of 18 infusions in three years of treatment and once my treatment stopped, so did the joint pain. Stay the course. Tom

Hi, After some advice or experiences. The story is below but my mum was admitted to hospital under no particular doctor. They found her a lung doctor and we are being given no information, her oncologist hasn’t visited once and the diagnosis she was given at the beginning of the year is now the complete opposite and no one has bothered to explain what she now has it’s like a “you’ve been there done that situation” but she hasn’t and she has no idea what she is dealing with. My mum (64) had a total thyroidectomy in December last year. No lymph nodes in her neck showed any signs of active cancer and there was only a small cluster found near the muscles in her shoulder which were completely removed. A scan after surgery showed spreading to her lungs (several small spots under 1cm no active cells). Treatment is Lenvatinib with a hopeful outcome to block them from spreading anything further and potential shrinking / disappearing. She started this in March this year and has 2weeks on it before developing a cough. Her oncologist took her off it and onto some antibiotics in case she had caught something (cough is apparently not a side effect of the drug). Antibiotics didn’t clear the cough up so she was prescribed a suppressant which helps. She then developed shortness of breath and it got worse over the next few weeks and she admitted to hospital on the 8th April and has been in since. It was finally discovered she had pleural effusion and drained a massive 4L (2 from under each lung). Her breathing has gotten a lot better. She has days where she is really good and days where too much activity has tired her out. She is also now a lot more mobile again (hospitals keep you in bed etc), showering everyday and going for walks up the corridor unassisted with the physio. So somehow we have gone from spots under 1cm no activity and hopefulness the Lenvatinib would keep them inactive and not spread to stage 4 MPE. The news that she won’t come out of hospital to the news her medication seems to be working quickly, producing very minimal fluid output and planning for discharge home by the end of the week. Emotions all over the place! She has only just gone back on her medication less than a week ago after being off it since half way through March. She still is still on oxygen at the moment but they have dropped that and are hoping to get her home without it or to a point she can use it if and when needed. So that’s counting for some of the shortness of breath as well. Will the cough get any better? It gets quite bad and she has a suppressant every 6hours… She has gone from fun, playground/park nanna for my grandkids, working 7days a fortnight and babysitting to such horrible odds and it’s so devastating. Everyone’s story is different I know and we are so very thankful she is still here just after some experiences or questions I should be asking? We really are getting nothing from her doctor.

Hope nodes are clear and surgery is curative for you!! Appreciate your update and will wait to hear on your final path..... Hang in there - this waiting is hard too...

I had a 17 mm lung nodule in early March 2024. On April 22 I had another ct and they say I have nothing there. I also had a 6mm nodule on my right lung for years and they say that is no longer there. it was noted as a -“17 mm focal irregular opacity.” My question is do they just disappear that fast ?

So true Tom. But isn't that the case with all hardship? Nobody escapes them. Thanks for sharing. Lou

Good to hear. Early diagnosis is a real benefit to success. Lou

https://www.si.com/nfl/2017/10/24/chris-mortensen-throat-cancer-recovery Mort passed not long ago.Worth the read. NFL draft tonight reminded me when they payed tribute. Cancer cares not if you are rich and famous or poor and lost. A vicious disease. Peace Tom

Hey all, just wanted to follow up. Had surgery Monday. As diagnosed it was adenocarcinoma. Dr removed a wedge of my lobe and said cleared margins. He also removed lymph nodes. Feeling lucky for the incidental find and choosing the surgical biopsy . Waiting on lymph node results. I have a Follow up may 9th. Thanks for the support.

I have severe joint pain. Hard to get around at times. Very hard to walk upstairs. Do any others suffer from this. What or how do you treat. Thank you very much. I have had chemo and radiation and now immunotherapy Almost done. Thank you.

I've been away from the discussion and this may have resolved itself, but, frankly, I think your situation is completely unacceptable. I would strongly suggest you get yourself to a facility specializing in lung cancer. I see you're in Maryland-- you have to be near a reputable cancer center specializing in lung cancer. Yes, I'm emphasizing a place with a specialty in lung cancer. That's because our cancer field is exploding with new research and a generalist cannot stay on top of the new developments. All you need is a starting place. It's kind of like being a detective and may take a little effort on your part. I don't have any comments pro or con the following places, but they may be good first steps. Potential resources: two NCI-designated cancer centers in MD. You can find them here:https://www.cancer.gov/research/infrastructure/cancer-centers/find I also found a lung nodule clinic affiliated with U of MD, which may be worth checking out. https://www.umms.org/uch/health-services/cancer/cancer-services-and-treatment/lung Keep at this. Keep us posted!

What a crappy situation! I am really surprised no one has suggested a PET scan now, rather than wait. You might suggest that to your pulm doc. Especially since you had existing nodules. Best wishes Tom

I understand your frustration with the not hearing and the waiting. Yours led to even more delays when you know biopsy is warranted now, let along next steps....About 7 weeks went by before I heard from my pulm after my December 2023 scan! I met with local onc in mid Feb who told me she believed I had a slow growing lung cancer. Heard from pulm by portal that evening (mid Feb-first time since Dec 2023 scan) - assuming onc contacted pulm? though could've been coincidence.... I already decided to wait for a 6 month scan so and pulm was ok with that.... Wishing you the best waiting for that appointment - surprised they wouldn't have just set that appointment AND also either referred you for biopsy or meeting with that expert (unless that is the May 29 appointment) or PET/CT if that's the route they end up going. LIkely what you all will talk about in May. Keep in mind calling for a cancelation prior to 5/29.... Hang in there.

Are you joining us in Atlanta May 3-5 for HOPE Summit? Saturday night is looking like lots of fun! From 7:15-9:15pm you'll be able to choose from the following activities: Sip and Paint with The White Ribbon Project: Join founders Heidi and Pierre Onda for a meaningful “Sip and Paint” session. Complete a ribbon for yourself to keep, give to someone else, bring to your community, or make available for someone newly diagnosed. Check your email for the RSVP link for this event. Improv Your Life with Sheryl Katzovitz: Join Sheryl— a medical training coordinator, seasoned theater performer, Atlanta native, and devoted mom and grandma— as she leads you through a series of fun games and exercises to expand your creativity and bring your playful side out of hiding! Zero theater experience required, just a willingness to try something new and be in the moment. Fun Zone with Epic Experience: Hosted by an organization that empowers adult cancer thrivers and survivors to live beyond cancer. Enjoy games such as Rumikub, cornhole, and Umali. Having a difficult time deciding? Don't worry, you'll have enough time to check out all of the activities! Learn more about the HOPE Summit Agenda and register for free by visiting lungevity.org/HopeSummit24

Bob, The waiting is one of the worst things about this disease. Hang in there. Lou

Thank you to all the good thoughts. i had the CT on the 1st of April and waited a week for the doctor to call. Nothing, I already saw the results on my Advanced Radiology portal. it Grew to the 8mm as they wanted so i called the doctor's office and they set an appointment for May 29th. Two months after the CT scan and then they may eithe schedule a biopsy or a PET scan. 2 months not knowing what the next action is can drive someone insane. I am looking things up and everything says to get these things as early as possible. That is hard to do with waiting 2 months for a doctor's visit.

@Anthony, a friend of mine has an Exon 19 mutation, with lots of mets to the bones. He was diagnosed 16 years ago. 16 Don't quit before the miracle....

I'm late to the party, but my congratulations are still BIG! What a heckuva time you had!

I'm always envious when surgery is an option for someone. It offers such a measurable outcome. For myself, starting into year 4 of this nonsense, I will will act aggressively and decisively the moment there is a change in the status of my scans. YMMV-- we all have different approaches and priorities. Best of luck.

Hello. I had a 1.2 cm round nodule in my RLL discovered in 2006. Had annual scans for 5 years and then forgot about it. Fast forward to 2020 (early) and that nodule had grown to the size of a lime. Upon reviewing my past surveillance scans I found that it had indeed been growing very slowly, but growing. No alarms were set off. Also the SUV uptake wasn't high but wasn't nothing at 1.8 My message is to not forget about it if you go the surveillance route. I ended up with 3 nodes involved and staged 3. Had a RLL VATs, chemo and radiation. Turned out to be Large cell NET (rare for LC) so the stats were scarce. They treated it as if it was small cell. I feel lucky to have had surgery because if it was known to be large cell protocol for surgery is sketchy. I would have it removed. I wish I had in 2006 (was given the option but doc suggesr a PET scan instead). Suffice it to say I was not a happy camper and made them very aware of that fact. Best of luck. Probably ok to go either way...if you keep cognizant it is there.

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These are tough decisions! It is important whatever you decide you are comfortable with it... wishing you the best as you decide.