jack14

Glad to hear that! I had to stop taking it because it caused bilateral pneumonitis. I was experiencing shortness of breath with mild exertion, like walking short distances. I bought a pulse oximeter from Amazon to keep an eye on my oxygen levels and it was dropping into the lower eighties! 
I ignored it as I was scheduled to get an oxygen needs evaluation through the VA.
Anyway, I went to see my oncologist to get my check up and after I walked in with the nurse from the waiting area to the exam room, I was breathing so much that she sat me down and went to get my doctor. They were in a near panic, and ordered an emergency CT scan! They were thinking, PULMONARY EMBOLI. I sure was hoping not. That is a killer. The staff in the cancer center stayed past closing to take care of me. 
The results of the scan ruled out a PE, or an exasperation of my disease. It did reveal significant bilateral pneumonitis. The Tabrecta, which was helping to reduce my tumors, was immediately discontinued. I was given steroids and allowed to go home.    I was given a healthy dose of steroids and slowly got my breath back, thank the Lord.
So watch her breathing, and notify her doctor right away if it worsens. Good luck, and I hope it doesn’t give you guys any trouble.

Good Bro,
Has anyone had progression in treatment and remained on an unchanged treatment plan? Yes, I've had that situation. Do doctors switch treatment at the first sign of progression? That is a complicated question and my best response is it depends on a myriad of factors, way too complicated for me to elaborate on.
Be mindful of liver lesions. They come in two general flavors: hyper dense and hypodense. Interpretation of each type as to cause is an art form. The size increase may be caused by chemo agents. New abdominal lesions are of greater concern. Do you know the location of these?
Stay the course.
Tom

Anytime one hears about growth of lesions/nodules/tumors it's not a good thing.  But more important will be what the ONC has to say about the scans, potential treatments, and anticipated outcomes.  My prayer is for hope in the discussion and always remember; anytime your brother feels the need for a second opinion he should get one.

Lou

So, after 7 months of Taxotere and Cyramza, I think there's a good chance my brother might be onto a 3rd line treatment.  Got his scan results back late last week and meets with his onc to go over them tomorrow.  However, he sent them to me to review and I didn't see the word "decrease" or "reduced" anywhere.  In fact, more than 10 of the lesions in his liver have increased in size and he has 2 new ones in the abdomen region (report didn't specifically state where).  Also mention of Pancreatic Atrophy.
Definitely not the results we were hoping for but maybe the oncologist will state that it's not as bad as it sounds.  That has happened before.  Anyway, crossing our fingers for tomorrow's discussion.  If they do switch up his treatment, hopefully this next one will be the one that finally works longer term.
Has anyone had some progression while on a treatment plan and your doc kept you on that treatment still?  Or, do they switch it at the first sign of any progression whatsoever?
 

My wife is now on week 13 of Tabrecta. So far tolerating well. Fatigue and minor stomach issues from time to time. She has also just started getting some swelling in her ankles. Very minor so far and is alleviated by simply raising her feet when relaxing. 
She also had a follow up brain MRI for numerous brain Mets. This was her first follow up since diagnosis 
The two large lesions were greatly reduced in size. The 15 minor lesions were gone and there were no new lesions. 
We are hopeful that the Tabrecta played some role In this since she also had WBRT in April
She has her first PET scan next week since starting Tabrecta in May. Keeping our fingers crossed

Kamoto,
Two concurrent cancers are a tough row to hoe but the Mayo Clinic is, as you mentioned, a world class hospital. Let's hope for the best treatment outcome.
Stay the course.
Tom

Chemo today is not like it was in the past. I had chemo and radiation before starting Tag. For me, radiation was hardest because it treated lymph nodes near my esophagus and caused esophagitis. If you do elect for chemo, get a palliative care specialist on your team beforehand. I'm sure Mayo has that resource. 

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. 

Kamoto, 
Oh damn and double damn. You’ve hit some weird cancer lottery, haven’t you? So sorry to hear this. 
You’ve been clear-eyed and action-oriented since you began recounting your cancer experiences here. Your response to the most recent events is no different. You seem to have established the most important parameter for you: avoiding treatment, i.e., chemo, that would affect your life in the way it did your mother’s. I think it’s just as important to know what we don’t want in our treatment experiences as it is to know what we do, so I commend you. 
Give Mayo a chance. They may come up with something that surprises you. 
Meanwhile, thank goodness for Tagrisso. I am so glad you are not in pain.
Karen
 
 

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Thank you so so much for everyone replying and kind advice. 
past week has been hell , we are all in denial, I’ve been asking everyone to test again , maybe a mistake has been made .
Update… 2 days ago , her breathing got worse and cough too , she started coughing up yellow and green colour phlegm. And could not keep anything down , felt nauseous and vomiting and stopped eating.
she was admitted to hospital and they did chest X-ray and confirmed the fluid has returned to the right lung and her left lung had bacteria infection.
Now she is on a drip to take all her medication, anti sickness , antibiotics Levofloxacin twice a day and sodium solution for dehydration. Antibiotics are helping the cough but breathing is still a major concern.
Spoke to her consultant today, he has arrange for a indwelling pleural catheter IPC. (Tomorrow afternoon)so that it can drained when needs be . This will help with the breathing.
our fingers are crossed at the moment in hope for the suitable pill for target therapy. The result will be know in a weeks time.
thanks again
regards
sajid
 

 

For six months my wife complained of back pain and shoulder pain and night sweats. Doctors prescribed muscle pain tablets and exercises. 
2 months ago her breathing became heavy. She was out of breath doing even minor things .
we took her to A&E where the did a chest X-ray and found fluid in her lungs. Also they did CT scan on her back and chest.
for results we were referred to lung specialist nurse, we got the biggest shock of our lives when they said they suspect cancer. 
they did further tests of the pleural effusion liquid to see if it was cancerous.
another shock , it was malignant pleural effusion. Cancer cells were present and it has spread.
primary was Lung cancer , tumour on her right lung 2.5 cm. Has spread to lymph nodes and lower back spine. See picture below .
how is this even possible, she is 44 years old , never ever smoked in her life , not overweight (55kg) .
our world just fell apart !!!
they said surgery is out of question because it has spread . 
we are to see a Medical Oncologist on 25th April 2022 . 
the malignant pleural fluid has be sent to a laboratory to be bio gene tested I think … if she is suitable for targeted therapy.
while waiting for this appointment and result. Her condition seems to getting worse . 
her breathing got worse , so they drained the fluid from her lung and which helped slightly. But the cough is the major problem . Every two house she has a cough fit , and starts to bring up phlegm (thick white colour) can she take anything to relieve this . 
she is on a low dose of OraMorf 1.2ml every 3 hours, for pain and cough relief. But it’s not working. Her O2 level drops to 83 . 
we got oxygen in house and when she takes that , o2 level goes up to 88 or 89 , never higher.
I feel so helpless, can’t do anything for her. 
what I want to know is will the cough ever go away .
is it curable with target therapy or treatable ? 
 
 
 
 
 
 

So sorry to hear that. I remember how I felt hearing that I had stage 4 adenocarcinoma NSCLC. That was a bit over two years. I had immunotherapy, target therapy, and now chemotherapy. I would get a second opinion if I got anything I didn’t like in regards to the treatment plan. I have been told to find a “comprehensive cancer” center if possible, as they typically get better results than those who lack that designation.

Immunotherapy and targeted therapy is a game changer for many of us! Trials are also a promising bet, as  I have been told. I think it’s also a wise idea to ask about palliative care to be added to the plan.
 
Last of all, I am getting my fifth chemotherapy infusion (three months so far),  as I am typing. It has not been that bad, hair loss and fatigue for a few days after my infusion. They have found ways to eliminate the agony many experienced in the past, so if they offer it, it’s worth trying. You can also halt it at any point.
 
Lastly, I would ask for a panel of genes from Foundation One to reveal any targetable gene mutations, if you haven’t gotten this information yet. It needs doing before any treatment.
Good luck to both of you!

So sorry to hear that. I remember how I felt hearing that I had stage 4 adenocarcinoma NSCLC. That was a bit over two years. I had immunotherapy, target therapy, and now chemotherapy. I would get a second opinion if I got anything I didn’t like in regards to the treatment plan. I have been told to find a “comprehensive cancer” center if possible, as they typically get better results than those who lack that designation.

Immunotherapy and targeted therapy is a game changer for many of us! Trials are also a promising bet, as  I have been told. I think it’s also a wise idea to ask about palliative care to be added to the plan.
 
Last of all, I am getting my fifth chemotherapy infusion (three months so far),  as I am typing. It has not been that bad, hair loss and fatigue for a few days after my infusion. They have found ways to eliminate the agony many experienced in the past, so if they offer it, it’s worth trying. You can also halt it at any point.
 
Lastly, I would ask for a panel of genes from Foundation One to reveal any targetable gene mutations, if you haven’t gotten this information yet. It needs doing before any treatment.
Good luck to both of you!

So sorry to hear that. I remember how I felt hearing that I had stage 4 adenocarcinoma NSCLC. That was a bit over two years. I had immunotherapy, target therapy, and now chemotherapy. I would get a second opinion if I got anything I didn’t like in regards to the treatment plan. I have been told to find a “comprehensive cancer” center if possible, as they typically get better results than those who lack that designation.

Immunotherapy and targeted therapy is a game changer for many of us! Trials are also a promising bet, as  I have been told. I think it’s also a wise idea to ask about palliative care to be added to the plan.
 
Last of all, I am getting my fifth chemotherapy infusion (three months so far),  as I am typing. It has not been that bad, hair loss and fatigue for a few days after my infusion. They have found ways to eliminate the agony many experienced in the past, so if they offer it, it’s worth trying. You can also halt it at any point.
 
Lastly, I would ask for a panel of genes from Foundation One to reveal any targetable gene mutations, if you haven’t gotten this information yet. It needs doing before any treatment.
Good luck to both of you!

So sorry to hear that. I remember how I felt hearing that I had stage 4 adenocarcinoma NSCLC. That was a bit over two years. I had immunotherapy, target therapy, and now chemotherapy. I would get a second opinion if I got anything I didn’t like in regards to the treatment plan. I have been told to find a “comprehensive cancer” center if possible, as they typically get better results than those who lack that designation.

Immunotherapy and targeted therapy is a game changer for many of us! Trials are also a promising bet, as  I have been told. I think it’s also a wise idea to ask about palliative care to be added to the plan.
 
Last of all, I am getting my fifth chemotherapy infusion (three months so far),  as I am typing. It has not been that bad, hair loss and fatigue for a few days after my infusion. They have found ways to eliminate the agony many experienced in the past, so if they offer it, it’s worth trying. You can also halt it at any point.
 
Lastly, I would ask for a panel of genes from Foundation One to reveal any targetable gene mutations, if you haven’t gotten this information yet. It needs doing before any treatment.
Good luck to both of you!

After a shocking first oncology visit last week to learn my hubby has metastatic adenocarcinoma, he went Friday to have a port put in and a pet scan.  Yesterday we met with his doctor and were told he has mets to liver, bone, lymph nodes.  Definitely not what we wanted to hear but yet here we are.
Tomorrow he starts chemo (Keytruda, Alimta, Carboplatin).  He goes every 21 days for treatment and after two rounds they will do a CT to check progress.  Praying for a positive reaction to the treatment.  The positive stories on this site are always so helpful and give hope.

Research is still out on RSO.  Yes, it's high in THC, but I look upon a "THC Based Solution" from a cannabis activist with a certain amount of skepticism.  I'd really like to see more evidence of efficacy, but if folks find it useful then more power to them.
Lou

It sure helps me sleep when I have insomnia. That’s a big plus for me. As for curing cancer, I am skeptical.

It sure helps me sleep when I have insomnia. That’s a big plus for me. As for curing cancer, I am skeptical.

It sure helps me sleep when I have insomnia. That’s a big plus for me. As for curing cancer, I am skeptical.

The immunotherapy drug keytruda worked for almost two years. 
Then the Tabrecta was working for a couple of months and then it began causing lung problems. Bi-lateral pneumonitis and almost did me in.
So, now I am in chemotherapy and so far no real bad issues. Second round this week.

I have metastatic NSCLC and have been through immunotherapy and presently on hold after being on tabrecta. So, I am searching for another line of therapy before doing chemo.
 

The immunotherapy drug keytruda worked for almost two years. 
Then the Tabrecta was working for a couple of months and then it began causing lung problems. Bi-lateral pneumonitis and almost did me in.
So, now I am in chemotherapy and so far no real bad issues. Second round this week.

I should know soon. I’m going to try the trial sample next week.