jack14
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Posts posted by jack14
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On 8/14/2022 at 10:11 AM, Rower Michelle said:
Hi Jack--
On occasion we've heard about people exploring the Joe Tippen protocol; but have yet to hear about anyone who actually went forward with it. Let me know what you think about it.... I've always been curious.
Hi Michelle
Sorry, I missed this until this evening when I decided to check in.
I am still skeptical, and hesitant to try it. But, if I run out of conventional options…..
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Just saw the results from my last CT scan: IMPRESSION:
Radiation changes in the left upper lobe
No evidence of recurrent or metastatic disease.My blood labs however revealed a lower platelet value, of 86. I see my Oncologist later today and suspect that she will probably take me off the Taxol Carboplatin for a month?
- Tom Galli and Justin1970
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And there’s the Joe Tippen Protocol (fenben). Well worth looking into IMO.
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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.
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On 2/15/2022 at 9:06 AM, CH29 said:
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.
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!
- Justin1970, Rower Michelle, CH29 and 1 other
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On 5/23/2022 at 10:11 PM, Pstar said:
Hi Jack,
My son wants me to try the Rick Simpson oil regimen. It sounds a little dangerous to make to me, plus you need a lot of marijuana. I would like to know how you make out if you do start it. Please keep us posted.
Pam
I should know soon. I’m going to try the trial sample next week.
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I want to try the Rick Simpson Oil regimen too. The oil counters the side effects of chemo too, as I understand it. Nausea and insomnia in particular.
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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.
- Justin1970, Roz, Tom Galli and 1 other
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I’m waiting for a VA home visit oxygen needs evaluation. Has anyone had one of these, or know someone who has? What can I expect? Sure hope it’s not involving any arterial blood gas draws. thanks
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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.
- LouT and Justin1970
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Gee Polly that sucks
was it pure durvalumab and was it near the port?
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Thanks Tom. The thoracic surgeon was going to remove the lung nodule by VATS, but the lymph node turning up malignant and as a met ended that. One thing I have learned though, that might be of value in dealing with the VA Mission Act, is that the Community Care department normally takes thirty days to process a request to see an outside provider unless it is expressly requested to be expedited by ones PCP or VA specialist. Of course the provider must be on their approved list or willing to be added to it.
I also learned that one must never give the outside provider their private insurance or Medicare because if they file that, then all sorts of problems will show up. Follow the instructions in the VA authorization to the letter. And our copy of that authorization is not the same as the one that they give the provider. Our copy lacks the information needed to file for reimbursement.
I will indeed pass this site on to those in need as I meet them. Thanks again, and I am planning on staying the course.
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Thank's Tom. I am more than willing to share my experiences with you great folks. Thank you for the opportunity, and thank you for being here to help. I was diagnosed with SCLC after an axial lymph node was removed and biopsied. There was some question as to it's origin, but after sending it to Johns Hopkins in Baltimore for additional examination and a second opinion, it came back as being a probable met from an 8mm lung nodule. A PET scan limited the cancer to some lymph nodes on the left side of my arm pit and the nodule on the right lung apex. Apparently it traveled across my chest to the other side, which they say is rare but happens. One of the Pathologists commented that they saw a cell actually "crawl" across a nerve in the specimen during the biopsy slide preparations! I had no idea that could happen, as I thought our cells travelled about the body by way of lymph fluid or blood. But, now, in retrospect, our cells do have to have the mobility to do their jobs, and must be able to crawl about tissue and interstitial spaces, etc. So, other than grossing me out after I first heard that, I feel a bit better about that part anyway. lol
Since the scan didn't reveal any thing else from the base of the skull to mid thigh, an MRI of the brain was done, with and without contrast. The brain, fortunately, is clear. After that, a PDL-1 revealed a 20% score for immunotherapy. The VA Oncologist I consulted with sugested I ask my civilan Oncologist to have a Foundation 1 Panel of Genes run to determine if there were any targets for therapy. The VA Oncologist got me approved to go outside the VA for treatment and my local Oncologist ordered the panel. We are waiting for the results before starting treatment. Monday will be two weeks since it was sent off. At this time, my Oncologist is not going to administer any chemo. I am looking at Keytruda every three weeks and maybe a target drug or two depending on the panel results. At least that's my understanding.
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I am a Viet Nam era Navy veteran and had my LC first detected by the VA during a lung nodule serial CT scan. I elected to receive my care outside of the VA through the Mission Act (formerly Veterans Choice). I haven't experienced any difficulties in getting care so far, and have used the program before for kidney stones and an abdominal aortic aneurysm open repair. There were some issues in regards to getting the providers paid, although it was finally resolved after the POTUS opened the White House Hotline.
Pet Scan Results and Treatment Plan
in NSCLC GROUP
Posted
Update: I have received nine tri-weekly infusions (paxel / Carbo), and my scan results have revealed no evidence of disease! I am now on a monthly physical exam. My Oncologist says that I could remain clear for months or years.
My prayers are for all of us to beat this horrific disease.