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!
- CH29, Tom Galli, Justin1970 and 1 other
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It sure helps me sleep when I have insomnia. That’s a big plus for me. As for curing cancer, I am skeptical.
- LouT, Shercares, Rower Michelle 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.
- LouT, Justin1970, Tom Galli and 1 other
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I developed bi lateral pneumonitis. Had to dc it.
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11 hours ago, Tom Galli said:
Jack,
Sorry I missed your question.
I've not had a VA oxygen evaluation home visit. My GP gave me his clinic's O2 saturation recorder with instructions to wear it while sleeping for 3 consecutive nights. When I returned the device, he downloaded the information and called reporting my O2 sat rate was dipping below 90% for periods of my sleep. Therefore, he prescribed supplemental O2. A home medical device company delivered the oxygen concentrator to my home along with all the tubing and mask.
I asked why my O2 saturation rate was dipping while sleeping. He told me it has to do with REM sleep where I go into a higher state of relaxation and don't breathe as deeply. I've been using the concentrator for about 4 months now. I put it in our connecting bathroom and close the door at night. It's noise takes getting used to but I am feeling more lively when I wake up and conclude it works. My O2 concentrator is a rental unit and the cost is 100% covered by Medicare. I didn't go through the VA system to get the machine, but I can't imagine the VA evaluation will be anything more than determining how much connecting tubing needs to accompany the machine.
I hope this answers your questions and sorry I missed your post.
Stay the course.
Tom
Thank you so much Tom!
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14 hours ago, LouT said:
Jack,
Glad to hear that you are improving somewhat. The VA always seems interminably slow...I hope you're able to get better responses from them as well.
Lou
thank you Lou
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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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On 3/26/2022 at 1:45 PM, Karen_L said:
Have you considered consulting a pulmonologist? Our oncologists are well-versed in attacking cancer, and even though they see medicine-related side effects, a pulmonologist offers different, more focused diagnoses and treatment options.
My oncologist first started me on steroids for pneumonitis caused by medicine-- an immunologic, durvalumab-- but my pulmonologist did more testing, got a clearer sense of the scope of the inflammation (pneumonitis), and found a pulmonary embolism to boot. (I hit the jackpot that day.) My treatment amped up considerably from there.
Hang in.
Karen
Thank you. fortunately I am still improving. I will request a pulmonologist if I feel a need. I have seen several over the years and had numerous pulmonary function tests. I also have emphysema and has steadily worsened over the years. I am under the VA and they are slow. I have been waiting for authorization from the oxygen people for over two weeks now.
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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.
- Justin1970 and LouT
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Anyway, she wants me on home supplemental oxygen. When I’m sleeping and for daily use as needed. I should have asked her why nights but I didn’t. Wonder why? I don’t believe that I have any sleep apnea, and I don’t have any trouble breathing when I lay down. Anyone have any ideas as to why? My resting oxygen sats run 92-94%. Before I started Keytruda my sats average 98-100 %.
Also, 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. How about you Tom?
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She also said that she didn’t believe that it’s cancer that’s causing these pulmonary issues. She added the she has seen it before in patients who were on Keytruda.
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13 hours ago, Tom Galli said:
Jack,
I know well those "possibly related to..." scan reports. I'm rooting for prior infection or inflammation.
Stay the course.
Tom
My oncologist is starting me on a two week prednisone regimen. She suspects that it’s related to medication.
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On 3/16/2022 at 12:36 PM, Karen_L said:
Isn’t ground glass also associated with pneumonitis? It was for me. I needed a boatload of steroids to calm that down.
I had an abdominal CT scan Monday and the radiologist said “There is extensive, new fibrotic change in the right lung base,of uncertain nature, possibly related to lung cancer therapy or alternately sequelae of prior infection or inflammation. Considerdedicated imaging of the chest to further evaluate.”
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On 3/14/2022 at 7:38 AM, LouT said:
Jack,
I'm so sorry to hear about these new symptoms. After reading your post I tried to increase my knowledge on GGO's and found a number of references to pneumonia and particularly Covid19. Did they test you for the virus? I'm also glad to see that the nodule you did have has not changed. My prayer is that your meds kick *ss and clear this pneumonia out of the ring. Please keep us updated.
Lou
Thanks Tom. Covid was ruled out by history of present illness, and signs and symptoms.
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.