Johnny
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Johnny got a reaction from LouT in Diagnosis
Hi tgif,
Thank you so much for responding!
I had a bag of Pemetrexed followed by the Pembrolizumab and finally the Carboplatin. It took about 90 minutes.
I go again in 3 weeks for the same.
I’m taking folic acid and ferrous sulfate, since the are telling me I’m anemic. I also need to take steroids the day before and after treatment. they also give it to me by IV the day of. I also am getting the b12. The team has been really good about explaining my blood work and your links are great!
It’s been 6 days and I feel blessed because so far I am doing ok. A bit more tired than usual but I think that is the way this works. I did wake the day after treatment with crazy chills, but they subsided in about 2 hours. No nausea so far but I sure am constipated and nothing I’ve tried so far is working. . I am losing weight like crazy but appetite is good and I’m eating everything. :)
Thank you again for sharing your journey and your well wishes, it certainly made my day.
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Johnny got a reaction from tgif i guess in Diagnosis
Hi tgif,
Thank you so much for responding!
I had a bag of Pemetrexed followed by the Pembrolizumab and finally the Carboplatin. It took about 90 minutes.
I go again in 3 weeks for the same.
I’m taking folic acid and ferrous sulfate, since the are telling me I’m anemic. I also need to take steroids the day before and after treatment. they also give it to me by IV the day of. I also am getting the b12. The team has been really good about explaining my blood work and your links are great!
It’s been 6 days and I feel blessed because so far I am doing ok. A bit more tired than usual but I think that is the way this works. I did wake the day after treatment with crazy chills, but they subsided in about 2 hours. No nausea so far but I sure am constipated and nothing I’ve tried so far is working. . I am losing weight like crazy but appetite is good and I’m eating everything. :)
Thank you again for sharing your journey and your well wishes, it certainly made my day.
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Johnny reacted to tgif i guess in Diagnosis
i had the same chemo - carboplatin and pemetrexed (alimta) mixed one day - pembrolizumab (keytruda which is immunotherapy) the next day - 3 week cycle
third day i had a neulasta type shot to boost white blood cells
i did that for about 8 months until remission (i was stage 4) - after 2 negative pet scans, he dropped the carboplatin and neulasta
i do take folic acid pills daily, b12 shot monthly
on chemo day i take steriods the day before, day of and day after (the carbo and alimta day)
when you get infused, they mix other stuff in the bag - like steroids or Benadryl or nausea meds - sometimes a separate bag
i have tolerated it well - no nausea or hair loss - blood work was normal and it has me in remission - my biopsy (lymph node) showed the cancer is genetic rather than smoking - my guess is it is either mesothelioma or something akin to it - so yes, there is a difference
i hope the regimen is as easy on you as it has been for me - and it works for you too
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Johnny reacted to tgif i guess in Diagnosis
oh - and blood work every 10-12 days
always a cbc - usually a cmp - about every other tine a cea
you can get all your reports online and read them yourself - they have your reading for each catagory of the tests and show the normal range - not too mysterious
i like the cea - i call it the cancer test for dummies - a cancer test (though there is more to it than that, im sure) normal is 0-something - for smokers its 2-4 (or something like that - i started at 55.8 and now back to normal range
i like this site for an explanation
cbc
https://labs.selfdecode.com/blog/cbc-blood-test/
cmp
https://labs.selfdecode.com/blog/comprehensive-metabolic-panel-cmp/
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Johnny got a reaction from tgif i guess in Diagnosis
Hi Karen,
I'm assuming the needle biopsy I mentioned and the tissue biopsy you mentioned are the same.
I start Carboplatin/Pembrolizumab/Pemetrexed treatment on Wednesday. I have it again 3 weeks after then a CT to see if the tumor shrinks.
J
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Johnny reacted to Karen_L in Diagnosis
You know, Johnny, I read your post so quickly I overlooked that initial phrase-- sorry about that. Yes, I would assume that needle & tissue biopsies are the same, especially given the doctor's comment about waiting for results. (Tissue-based biopsies take several weeks.)
Fingers double-crossed that the infusions go well and that they deal the tumor a mighty blow.
Karen
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Johnny reacted to Tom Galli in Diagnosis
Johnny,
Rikkie's suggestions are good, especially about what caused your lung cancer and survival statistics. All that matters now is how to treat it.
Your genetic testing will reveal if your cancer can be treated with Targeted Therapy or Immunotherapy. The former only works with a small percentage of those with adenocarcinoma. Immunotherapy can work with all forms of lung cancer and I know folks who take it with MS. So let us know what the biomarker testing reveals.
I have too much experience with pain and I try and avoid opioids also. My avoidance challenge is sleeping. My doc prescribed Xanax to be taken about 30 minutes before bedtime. It relaxes me enough to allow sleep, sometimes. When my post-treatment symptoms combine to elevate my pain level to intolerable, I use Tramadol. It is easier for me than other pain meds, and I concurrently use laxatives to avoid constipation.
Stay the course.
Tom
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Johnny reacted to Tom Galli in Couple of things
Welcome Johnny,
You've already received cogent advice about treatment and family involvement from some of our very knowledgeable members. At this junction, my only suggestion is if I can live, so can you!
Stay the course.
Tom
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Johnny got a reaction from Tom Galli in Introduction
I'm Johnny from the Pacific Northwest. CT came back yesterday and it doesn't look good. Glad to be here though.
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Johnny reacted to LouT in Couple of things
Johnny,
I just finished responding to your first posting in "Introduce Yourself". There I asked for more details which you've provided here. The needle biopsy is the real indicator of whether or not you are dealing with cancer. The PET and MRI are to determine the extent of the cancer, (e.g., could there be brain mets). At this point you're still in the diagnostic stage (which we all find to be long), but once you have a treatment plan things will feel better.
Telling your family is such a personal matter I hesitate to provide any counsel on it. For my part, I waited until I had a diagnosis and then shared it with my children (except one daughter), and family. My wife was already ill and not capable of understanding the situation. You know your family best and next week sure is close so you need to think about what you want the family to know. I will say it is good to have support at a time like this. In my case the daughter living close to me is the one who went through the diagnostic process with early on.
Please keep us updated as you go through this process. There is a lot of information to share with you if you receive a final diagnosis of LC.
Lou
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Johnny reacted to RJN in Couple of things
Hi Johnny,
Sorry to hear you are going through this. For what it is worth, it will probably be the mentally toughest part of the ordeal. Once you have a diagnosis and have shared with those who need to know, you can move on to the “action” part. As you will see in this forum, lung cancer need not be a downhill spiral. Many do really well on modern treatments.
Only you will know who to share with. I have a very big circle of friends and family, so I split mine into a few different groups: 1. Close friends who I told immediately as I needed their support 2. My dad who I told when docs were fairly certain, but before final results (he is a doctor so knew he would want to be part of the process) 3. After diagnosis and once I knew my treatment plan I talked to remainder of my close family and friends, as I wanted to be able to tell them with a clear plan, so they didn’t have to wait and worry 4. Everyone else (personal contacts) - made a Facebook post. It made it easier for everyone to know, and not be the subject of rumours and misinformation. And 5. Work network, only some people know, as and when it feels necessary. I think most of my network know now, but as it has been almost 2 years and I have seen most people in person, there is no longer much shock and drama…
Personally, I think it was a balance between my need for support, but also not having to carry other people’s worry and grief. But it did help me having a bit of a strategy (this is what I do for work, so guess it is ingrained).
All the best, Rikke
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Johnny reacted to BridgetO in Couple of things
HiJohnny, I'm a survivor of three primary cancers. I don't have any living close family except my wife (and her mom and sisters). I've been open with people I know from the time I was being diagnosed. I've found that being matter of fact about it makes it easier for others. Cancer, especially lung cancer has a bad reputation. So far as it being an illness, and a hard one, that rep is justified. But there's also a stigma, for lung cancer especially. I think that talking about it helps demystify it and helps reduce the stigma.
My mother, who wasn't a role model for me in a lot of things, was a role model in sharing and being matter of fact about cancer--she had two of them. Her openness about this helped me be less fearful and anxious about my own cancers. It seems to me that illnesses that are hidden or secret can create more stress for the patient and for loved ones
I know that all families are not alike . I know someone who went to great lengths to hide her cancer from her mom, who was ill and fragile. She went so far as to get a hairstyle that could be easily duplicated and then got a wig that duplicated it to wear when her hair fell out from chemo. So I understand that all families are not alike and we each do what we need to do and who and when to tell what is a personal matter.
All the best to you in dealing with your cancer and your family.
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