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Post by jumperhop on Oct 22, 2015 23:50:23 GMT
Considering the odds of it coming back or not are so close to each other I wouldn't do it. Jen
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melissa
Pearl Clutcher
Posts: 3,912
Jun 25, 2014 20:45:00 GMT
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Post by melissa on Oct 22, 2015 23:53:21 GMT
am curious if this gene mutation is something that happens during a lifetime, or if it is something you are born with? This is a acquired mutation of the tumor cells. It is not inherited from one person to the next. If this information was not completely in when she saw the first oncologist, then his or her information would not have been as accurate. I hope they can go back for a second consult at Mayo and get their questions answered. It is very interesting to me that the new medication is currently being used only for stage 4 disease. This is the way it usually works. They treat those with stage 4 disease and learn even more than they did in trials. Next, the medication trickles down. They begin trials on those without stage 4 disease to see if they can prevent recurrences. However, from a super quick review for this mutation and lung cancer, shows that there are concerns about resistance. I suspect that is why this medication is not being used yet or at all for lower stage disease. One thing she could inquire about is clinical trials. Mayo may very well be participating in some appropriate trials.
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Post by Karmady on Oct 23, 2015 0:24:20 GMT
My mother had Stage IV non-small cell Adenocarcinma. She went through 3 rounds of chemo. After the first two rounds, the tumour shrunk and started to grow again after a few months. She entered treatment knowing that this was not a cure for her but rather maintenance or treatment to prolong her life. Mid-way through the third round, the cancer had spread to her brain. They stopped chemo and started radiation.
My mother was an active "young" 74 year old and she lasted for a little over 2 years. The first year and a half was good. She had her chemo, stayed home for a few days to recover and was off and running. She didn't lose weight or her appetite. She drove to the mall, the casino, out of town and went out with her friends.
It really is a personal choice. Would I do the chemo? Probably.
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Post by Penellopy on Oct 23, 2015 0:33:51 GMT
My husband was diagnosed with Non-Small Cell Lung Cancer Stage IIIA, 3 years ago at the age of 65. His oncologist recommended radiotherapy and chemo at the same time. His cancer was too close to bronchial tubes to do surgery. I told him it was his decision, but would support him either way. He chose to do it.
According to him, the chemo was the easy part. The radiation was the worst. Chemo was 5 days, off 7 days, on for 8 days, off for 8 days and on for 5 days. The radiation was 37 treatments and only off on the weekends. The radiation made him tired and unable to eat more than soup and protein drinks do to the burning. They were able to give him something to numb his throat and esophagus so he could eat, but he said that was worse that trying to get down soup and protein drinks.
He was cancer free for 2 years and a small spot showed up on his scan. He was given the option to do another round of Chemo or do nothing. He choose the chemo. Again his choice even after he told me he would never do that again. Radiation was out this time due to the location and it was too close to the time he had it done. This chemo was combination of cisplatin and navelbine. And it was evil. With this combination, they did the chemo every 3 weeks for a 5 hour drip for 4 treatments. But it worked. He is now cancer free again but will continue to be monitored every 3 months. We knew this was going to be a brutal combination due to my Mother had been on the same combination in her battle with Ovarian Cancer.
In fighting cancer, I told my husband as long as he stayed positive and looked to his faith, he would pull through. His oncologist told him the same thing. He is strong and very active. Once he decided to go through with all the treatments, we just rode the waves of what the chemo/radiation brought. While going through the treatments the 2nd time, he said he just felt like he had a bad case of the flu. A couple of weeks after the last treatment he felt back to normal. When we got the all clear again, he was glad he did it again.
I will keep you and your family in our prayers.
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Post by jackie on Oct 23, 2015 12:07:26 GMT
Not that it's anyones choice but mine. The condition that I already suffer from has led me to my decision so unless you know all about that I wouldn't comment on the craziness of it. I'm sorry you have a medical condition that precludes the use of any chemotherapy, ever, for any reason. What you originally expressed did not appear to include anything about a medical condition, but rather, personal preference: "For myself personally, I wouldn't do it. I've always said that chemo is not an option for me under any circumstances." "I wouldn't do it," not "I couldn't do it." Whatever. Your choice. I will continue to have opinions about people making apparently arbitrary choices based on no knowledge of the actual situation they may end up involved in. Right. I had the same reaction Lucy did to such a strong blanket statement against something that has saved so many people's lives. Obviously you can choose to share or not share your personal info, but when someone asks for advice about doing chemo, and you make that kind of statement without at least a little bit of explanation, it's not really helpful. For me, and this may seem naive or oversimplified, but for my ovarian cancer I asked "What would you do if this was your wife --would you advise her to get the chemo?" I felt (hoped) that we had the kind of relationship where he would be honest. My situation was different though--I was not given those kinds of side effects. Being in my forties with teenagers at home, I felt anything I could do to possibly prolong my life, I would do. Yes, I suffered during chemo, but I'm glad I did it and would do it again.
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Deleted
Posts: 0
Apr 28, 2024 12:17:08 GMT
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Post by Deleted on Oct 23, 2015 12:11:52 GMT
The OP asked if we would do it, I answered based on that. What I choose to share is my business, what you choose to read in to it is yours.
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Deleted
Posts: 0
Apr 28, 2024 12:17:08 GMT
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Post by Deleted on Oct 23, 2015 13:12:55 GMT
I pray I am never in that position. But, I don't know if I would subject myself to that to raise my odds by 5%. So sorry your Mom has to be in that position.
Ann
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Post by iamkristinl16 on Nov 4, 2015 19:10:28 GMT
Update in OP
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Post by peasapie on Nov 4, 2015 19:16:54 GMT
I hope this is a very positive development for your mom and that she will be eligible. I've heard about new, targeted treatments for lung cancer.
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Post by mikklynn on Nov 4, 2015 19:24:42 GMT
Sending prayers for your mom. I hope she gets the medication.
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Post by jeremysgirl on Nov 4, 2015 19:31:40 GMT
If she can get the med, that's great! I will keep her in my prayers that all goes well.
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Post by evelynr on Nov 4, 2015 19:57:06 GMT
Wow, such tough choices in life. I went to doctors with my sister when she had breast cancer and I remember thinking the same way - it seemed like the treatment choices only improved the success rate by such a small percent. But on the other hand, you stand to lose so much its worth the fight.
Best wishes to you and your mom. I like the idea of the clinical trials. My sister in law works in clinical trials, and she says they monitor you so closely that in the end, you end up receiving much better care. And you always have the option to stop the trials when you want to.
Hugs.
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Post by iamkristinl16 on Nov 4, 2015 20:07:54 GMT
The Dr. told her that the targeted treatment was showing better success than the chemo as a first line treatment, even in stage . The Dr. at Mayo said he would still recommend the chemo, but then when she questioned it, he asked a "senior" dr, who said that at his age (around the same age as my mom) and level of hearing (my mom said she already has hearing loss now, and that is one of the side effects of the chemo) he would just do the pill.
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Post by mymindseyedpea on Nov 4, 2015 20:30:30 GMT
I find it interesting that the day the clinical trial rep talked to the Dr. was the same day that your mom planned to tell him that she chose to do the chemo. ( unless I got that misinterpreted ) I see that as a meant to be and a go with the flow kind of thing. So even though I personally wouldn't choose either form of treatment if it were me, I would definitely pick the med over the chemo. And in this case it sounds like the flow of choice. So I will send positive vibes that this will work out for her!
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Post by iamkristinl16 on Nov 4, 2015 20:56:35 GMT
I find it interesting that the day the clinical trial rep talked to the Dr. was the same day that your mom planned to tell him that she chose to do the chemo. ( unless I got that misinterpreted ) I see that as a meant to be and a go with the flow kind of thing. So even though I personally wouldn't choose either form of treatment if it were me, I would definitely pick the med over the chemo. And in this case it sounds like the flow of choice. So I will send positive vibes that this will work out for her! Thanks for sending positive vibes! She almost cancelled this appointment because my stepdad thought it was a waste of time, since they were going to go with the Mayo Clinic doctors for the chemo. But, they kept the appt. As the nurse was checking her weight, the nurse made a comment about other treatments. My mom told her that she was actually going to start chemo next week. When the doctor came in he said, "So, I hear you have news for me, but I have news for you!" He had just talked to the drug rep that morning (yesterday). My mom had been researching trials and found the one they referred to, but thought maybe she was reading it wrong since the mayo dr hadn't mentioned it. The main thing now is the time crunch. She was told that she need to start chemo this week or next if she was going to do it. They also said that it could take 10 days to get confirmation from the drug company in regards to the cost.
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Deleted
Posts: 0
Apr 28, 2024 12:17:08 GMT
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Post by Deleted on Nov 4, 2015 21:07:34 GMT
Hoping and praying it works out with the trial!!!! Let us know!!!
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maurchclt
Pearl Clutcher
Posts: 3,614
Jul 4, 2014 16:53:27 GMT
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Post by maurchclt on Nov 4, 2015 23:44:20 GMT
Certainly hope the meds can work out for her, sounds like it's falling into place, keep us posted please.
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Post by LavenderLayoutLady on Nov 5, 2015 10:32:57 GMT
So, keep your fingers crossed that the rep wasn't giving info that he shouldn't have, and that it turns out well! Fingers crossed! (((hugs))) to you & your mom.
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Post by Spongemom Scrappants on Nov 5, 2015 11:54:13 GMT
If the drug trial seems the most promising for her, then I hope she gets approved. It always feels hopeful to at least have other options.
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Post by gailoh on Nov 5, 2015 12:25:10 GMT
hugs and prayers that all goes well...remember to take care of yourself as well...
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Post by iamkristinl16 on Nov 5, 2015 13:36:04 GMT
Thanks everyone. I will definitely update when I have new info.
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~Susan~
Pearl Clutcher
You need to check your boobs, mine tried to kill me!!!
Posts: 3,258
Jul 6, 2014 17:25:32 GMT
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Post by ~Susan~ on Nov 5, 2015 15:25:46 GMT
I will definitely be keeping my fingers crossed for your mom.
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Post by iamkristinl16 on Nov 7, 2015 20:32:13 GMT
She was approved for the medication! Her insurance is even covering it, which is surprising since it is not an approved drug yet. So, instead of $10,000 a month she will pay a $10 copay. So, no chemo!
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Post by jenjie on Nov 7, 2015 20:38:07 GMT
She was approved for the medication! Her insurance is even covering it, which is surprising since it is not an approved drug yet. So, instead of $10,000 a month she will pay a $10 copay. So, no chemo! Ohhh I hope this will be her answer! Praying.
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Post by NanaKate on Nov 7, 2015 21:09:09 GMT
(((HUGS)))
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Post by uksue on Nov 7, 2015 21:58:26 GMT
This was a huge decision for me earLier year, as I was told the radiotherapy was likely to destroy my ileo anal pouch ( created after my first cancer 6 years ago.) that would seriously alter my quality of life. Because the odds were better than your mothers I decided to opt for the chemo and radiotherapy because I have a young child. In my case I had such severe side effects the treatment was terminated 17 treatments into 25. I was very ill and am just starting to feel more my old self .
With the odds your mother was given I doubt I would go ahead with the aggressive regimen but the trial sounds promising - I pray it will come through for her.
ETA Sorry I didn't read to the end before commenting- but I'm so happy she has been approved ! Prayers she will gain great benefit from it and stay feeling well.
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Post by iamkristinl16 on Nov 7, 2015 22:15:33 GMT
Thanks! Uksue--I am glad you are feeling better. I hope things keep improving. Cancer sucks.
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