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Post by iamkristinl16 on Oct 22, 2015 16:17:11 GMT
Thanks, everyone. I know that it is her decision and that any one of us can only speculate what we would do unless we have been in that position. I am sure our family will be supportive of her no matter what. I think the only person that will have any influence over her decision would be my stepdad. I have a feeling that my mom would choose not to do the chemo--she is very active and vibrant, and wouldn't want to have the side effects that she is being warned about unless there was a higher chance of it helping. I also have a feeling that my stepdad would urge her to try the chemo, but I could be wrong. We will just have to wait and see, and get more info. She said that they have more questions after talking on the ride home from Mayo, and I have some questions as well. I am wondering if she would have to do the chemo now or could they wait to see if the cancer came back? If it did come back, would surgery be an option again? What is the likelihood of the side effects? I assume that since more than one doctor has suggested that she not do the chemo, that the side effects really are unbearable. I also wonder if she would start it and then stop, is there any benefit that she would get from the amount that she did do?
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Post by jenis40 on Oct 22, 2015 16:17:25 GMT
I had acute myeloid leukemia which is a very aggressive cancer. I did 9 months of chemo that I tolerated very well. Fatigue was my biggest issue. Then I relapsed and ended up having a stem cell transplant that I had a 60% chance of surviving. My overall chance of survival from the disease is between 25 and 50%. I went through a month of hell post transplant and came out of it very weak. I lost 100lbs (through the whole ordeal not just post transplant and I had it to lose) and pretty much all my muscle mass. At one point i had gained 40 lbs due to edema and my legs were so swollen I couldn't walk. I got a side effect called mucositis and couldn't eat or drink for 2 weeks.
Today I am a year post transplant and I have some myopathy in my feet (nerve damage), my appetite and digestion are still not quite back to normal and my stamina is nil. It's a good day when I can get around the grocery store. I take a lot of pills every day and recently developed joint pain due to graft vs host disease, a common issue for transplant patients that has different side effects for different people. Mine is joint pain kind of like arthritis.
I am 42 years old and feel like I'm 80 some days. But I would do it all again if I had to because today I am alive. And I am so grateful for that. So I would do the chemo knowing I could stop it if I felt it wasn't worth it anymore. For me, it was worth fighting with everything I had.
TL;DR - I would do the chemo even though I know first hand that it's not a walk in the park. But everyone is different and reacts differently so my experience is not a one size fits all. I respect each persons decision to do what's best for them.
ETA I'm sorry your mom is facing this. My thoughts go out to you and your family as you are going through this.
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Post by mymindseyedpea on Oct 22, 2015 16:19:02 GMT
I've found non-resistant ways of healing Cancer so I would go those routes.
Sorry she is going through this.
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Post by lucyg on Oct 22, 2015 16:22:38 GMT
Deleted. *sigh* Never mind! ETA oops, sorry to those who liked my post before deleting.  |
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Post by KelleeM on Oct 22, 2015 16:25:11 GMT
That would be a really tough decision.
I had breast cancer with positive lymph nodes. Chemo was a given. It wasn't quite as horrible as I expected but it was tough. But six months of my life in exchange for (hopefully) many years was a fair exchange I think.
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Post by 950nancy on Oct 22, 2015 16:26:43 GMT
I lost my mom to lung cancer when she was 58. It is an awful cancer. I would try chemo.
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Post by iamkristinl16 on Oct 22, 2015 16:29:25 GMT
I just got an email from my mom after asking her about the gene testing.
She said that she does have the ALK (anaplastic lymphoma kinase) mutation, which causes about 1% of non-small cell adenocarcinoma lung cancers. If she does chemo now, it will be with a harsh combination of cisplatin and navelbine. The ALK inhibitors are currently only used for stage 4, and the doctor said he would have no idea how much to give her at this point, or for how long. So, it sounds like they are saying that could be an option in the future, but right now she needs to decide whether or not to do the chemo. They said it needs to be started in the next few weeks if it is going to happen, which sucks even more since we are going into the holiday season.
I am curious if this gene mutation is something that happens during a lifetime, or if it is something you are born with? Should my brothers and I be concerned that we may have it as well? We have a pretty high rate of cancer in our family. My mom's dad died of brain cancer at age 50. His only sister died of cancer at a young age as well (not sure what kind). Their dad (my mom's paternal grandfather) had colon cancer. My mom is one of 6 children (second to oldest). One of her sisters has had two types of tumors (one behind her ear and one on her leg). Two other sisters have had benign tumors as well. My mom has had basal cell carcinoma (skin cancer). One of my cousins (on my mom's side) has a benign tumor on her arm. My son has a benign tumor on his leg. My dad died of leukemia at age 54.
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Post by papercrafteradvocate on Oct 22, 2015 16:31:17 GMT
Odds are odds and that it just it--a best guess for the effects of chemotherapy and cancer returning.
I think the question you (your mom) might want to ponder is this :
Am I ready to fight this and live as best that I am able to considering the effects of chemo...
OR
Am I content with how it is now, knowing that the cancer could come back (with or without treatment) and not be affected/deteriorate by chemo.
My grandmother opted not to have more chemo. She was older than your mom, lived a very full life and did not want the chemo to end her life. She passed within 6 months of turning the chemo down--but again she was 20 years older and different cancer. She was happy about not having chemo again!!
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Post by iamkristinl16 on Oct 22, 2015 16:34:13 GMT
I like the idea of talking to people who have had this type of chemo. I thought chemo was the same for everyone, but apparently it is not. My stepdad's mom had colon cancer and chose the more aggressive form of chemo and tolerated it well. She has been cancer free for several years now. My stepdad brought this up with the doctor and was basically shut down. The doctor said that the more aggressive form of chemo that his mom had is like the light version that my mom could have, and nothing like what they are proposing.
It is good for them to give her the information about side effects, but I also feel like if she chooses to go that route, her mindset will be negative against it (rather than seeing it as a positive option) and it will make it that much harder.
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Post by Fidget on Oct 22, 2015 16:38:09 GMT
What a hard decision to have to make, best wishes to your Mom whichever course she decides to take!
Personally for me, the odds are not great enough to go through chemo. But, like others have said, I may feel different if I'm ever in the situation.
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Deleted
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Post by Deleted on Oct 22, 2015 16:56:45 GMT
iamkristinl16 and @peasville, I'm sorry for your family situations.  What a tough choice to make, I hope she finds peace with whatever decision she makes. For myself personally, I wouldn't do it. I've always said that chemo is not an option for me under any circumstances. Why would you make such a blanket statement with no knowledge of an actual medical situation? I spent six months on chemotherapy 18 years ago and most of it was relatively easy. I had a virulent form of breast cancer and two kids still at home who had already lost their father. The chemo has extended my life at least this long so far with no end in sight. My hair grew back, there were no permanent effects, chemo is a dim memory, and damn, I appreciate being alive. If I'd had your attitude, I'd probably be dead now. Why would anyone make such a pronouncement with no information about the specific medical issues, your age, your family situation, the quality of the chemo, how hard (or not) it may be to take, lasting effects, likelihood of knocking out a killer disease ... it just seems foolish.  It seems foolish in your opinion. I don't have to share my reasons with you nor is about not appreciating being alive. You do what you think is best for YOU and I'll do what I think is best for ME. |
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Post by pierkiss on Oct 22, 2015 17:10:14 GMT
I have seen what lung cancer and the treatment does to the body and the person. It's harrowing. At that age, I'm not sure I would do it. And that they got all the Cancer out with surgery? That would sway me even more not to do it. But I can't really say for sure as I have never had to make that decision.
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Post by papersilly on Oct 22, 2015 17:20:38 GMT
wow, there is only a 5% shift between chemo and no chemo? that's a toughie. I would say yes, because she is young and otherwise healthy. but, if the side effects are that severe, what quality of life would she have after? toughie decision.
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likescarrots
Pearl Clutcher
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Post by likescarrots on Oct 22, 2015 17:24:45 GMT
iamkristinl16 and @peasville, I'm sorry for your family situations. What a tough choice to make, I hope she finds peace with whatever decision she makes. For myself personally, I wouldn't do it. I've always said that chemo is not an option for me under any circumstances. Why would you make such a blanket statement with no knowledge of an actual medical situation? I spent six months on chemotherapy 18 years ago and most of it was relatively easy. I had a virulent form of breast cancer and two kids still at home who had already lost their father. The chemo has extended my life at least this long so far with no end in sight. My hair grew back, there were no permanent effects, chemo is a dim memory, and damn, I appreciate being alive. If I'd had your attitude, I'd probably be dead now. Why would anyone make such a pronouncement with no information about the specific medical issues, your age, your family situation, the quality of the chemo, how hard (or not) it may be to take, lasting effects, likelihood of knocking out a killer disease ... it just seems foolish. i agree, it's crazy to say you wouldn't do it under any circomstances, when tons of people have successful treatment with chemo. Honestly i thought i was reading that wrong at first. And i'm not the kind of person who believes in 'life at any cost', but it doesn't make any sense to say no chemo ever no matter what.  ? |
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Post by jenjie on Oct 22, 2015 17:25:00 GMT
that is a difficult decision. i don't know that there is a right or wrong answer. Just a sucky decision she shouldn't have to make.
When Dh original chemo stopped working he was offered a couple of other options, none of which had more than 10-15% chance of working. He determined those odds weren't worth going through chemo again. IIRC the doctor said between him and his wife, both health care professionals, one would go for it and one would refuse.
Your mom is in a different situation altogether. Why are they in such s hurry to begin chemo if she is considered cancer free?
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Deleted
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Post by Deleted on Oct 22, 2015 17:35:58 GMT
i agree, it's crazy to say you wouldn't do it under any circomstances, when tons of people have successful treatment with chemo. Honestly i thought i was reading that wrong at first. And i'm not the kind of person who believes in 'life at any cost', but it doesn't make any sense to say no chemo ever no matter what. ? 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. |
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Deleted
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Post by Deleted on Oct 22, 2015 17:38:16 GMT
For a 5% difference in outcome, I do not think I would opt for an especially brutal course of chemo.
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Post by mymindseyedpea on Oct 22, 2015 17:40:44 GMT
iamkristinl16 and @peasville, I'm sorry for your family situations. Why would you make such a blanket statement with no knowledge of an actual medical situation? I spent six months on chemotherapy 18 years ago and most of it was relatively easy. I had a virulent form of breast cancer and two kids still at home who had already lost their father. The chemo has extended my life at least this long so far with no end in sight. My hair grew back, there were no permanent effects, chemo is a dim memory, and damn, I appreciate being alive. If I'd had your attitude, I'd probably be dead now. Why would anyone make such a pronouncement with no information about the specific medical issues, your age, your family situation, the quality of the chemo, how hard (or not) it may be to take, lasting effects, likelihood of knocking out a killer disease ... it just seems foolish. i agree, it's crazy to say you wouldn't do it under any circomstances, when tons of people have successful treatment with chemo. Honestly i thought i was reading that wrong at first. And i'm not the kind of person who believes in 'life at any cost', but it doesn't make any sense to say no chemo ever no matter what. ? There's been tons of people with successful treatment of non-aggressive ways as well and too many I know that had unsuccessful experiences with chemo. I guess I'm one of the "crazies" because I personally would never choose this route for me either. |
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likescarrots
Pearl Clutcher
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Post by likescarrots on Oct 22, 2015 18:27:42 GMT
i agree, it's crazy to say you wouldn't do it under any circomstances, when tons of people have successful treatment with chemo. Honestly i thought i was reading that wrong at first. And i'm not the kind of person who believes in 'life at any cost', but it doesn't make any sense to say no chemo ever no matter what. ? There's been tons of people with successful treatment of non-aggressive ways as well and too many I know that had unsuccessful experiences with chemo. I guess I'm one of the "crazies" because I personally would never choose this route for me either. Yeah, i don't think anyone on this forum would take seriously any medical advice given by you. |
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Post by mymindseyedpea on Oct 22, 2015 19:02:52 GMT
There's been tons of people with successful treatment of non-aggressive ways as well and too many I know that had unsuccessful experiences with chemo. I guess I'm one of the "crazies" because I personally would never choose this route for me either. Yeah, i don't think anyone on this forum would take seriously any medical advice given by you. That's because I go by my resonance and inner knowing, and not everyone is ready to explore these avenues, which is ok. |
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Post by iamkristinl16 on Oct 22, 2015 19:10:23 GMT
I've been reading "Anticancer" and think there is a lot of good info there, particularly in regards to food, environmental factors, and state of mind and how they can affect outcomes. However, I personally don't think that they can take the place of all other treatments. In my dads case, it was evident that chemo was the only option for trying to save his life. He was very sick and his cancer was aggressive. It was a no-Brainer (to me) to do it. However, in my moms case, it isn't as clear. She is supposedly cancer free right now and might stay that way. To willingly make yourself feel horrible and with possibly lasting side effects that will change your lifestyle, with little chance that it will help in the long run, is different. I still
Don't know what I would do, and will support her I whatever choice she makes. I do have to admit that the idea of this chemo makes me scared.
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Post by Darcy Collins on Oct 22, 2015 19:47:25 GMT
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Post by iamkristinl16 on Oct 22, 2015 19:56:59 GMT
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Post by mymindseyedpea on Oct 22, 2015 20:19:18 GMT
I've been reading "Anticancer" and think there is a lot of good info there, particularly in regards to food, environmental factors, and state of mind and how they can affect outcomes. However, I personally don't think that they can take the place of all other treatments. In my dads case, it was evident that chemo was the only option for trying to save his life. He was very sick and his cancer was aggressive. It was a no-Brainer (to me) to do it. However, in my moms case, it isn't as clear. She is supposedly cancer free right now and might stay that way. To willingly make yourself feel horrible and with possibly lasting side effects that will change your lifestyle, with little chance that it will help in the long run, is different. I still Don't know what I would do, and will support her I whatever choice she makes. I do have to admit that the idea of this chemo makes me scared. Does the book express the combo of food, environment and mindset in substitution with chemo or in addition to? |
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Post by iamkristinl16 on Oct 22, 2015 20:43:38 GMT
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Post by mymindseyedpea on Oct 22, 2015 20:58:45 GMT
There's a program I was introduced to on iheart radio through w4cs.com/that seems to talk a lot about what this book seems to expresses. Someone I knew was doing a radioshow on it over the summer so I would listen to her broadcasts and then I would get interested in the ones that followed it. Maybe there is a discussion somewhere on there about those who have this new edition of the book. |
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Post by iamkristinl16 on Oct 22, 2015 21:03:49 GMT
I had acute myeloid leukemia which is a very aggressive cancer. I did 9 months of chemo that I tolerated very well. Fatigue was my biggest issue. Then I relapsed and ended up having a stem cell transplant that I had a 60% chance of surviving. My overall chance of survival from the disease is between 25 and 50%. I went through a month of hell post transplant and came out of it very weak. I lost 100lbs (through the whole ordeal not just post transplant and I had it to lose) and pretty much all my muscle mass. At one point i had gained 40 lbs due to edema and my legs were so swollen I couldn't walk. I got a side effect called mucositis and couldn't eat or drink for 2 weeks. Today I am a year post transplant and I have some myopathy in my feet (nerve damage), my appetite and digestion are still not quite back to normal and my stamina is nil. It's a good day when I can get around the grocery store. I take a lot of pills every day and recently developed joint pain due to graft vs host disease, a common issue for transplant patients that has different side effects for different people. Mine is joint pain kind of like arthritis. I am 42 years old and feel like I'm 80 some days. But I would do it all again if I had to because today I am alive. And I am so grateful for that. So I would do the chemo knowing I could stop it if I felt it wasn't worth it anymore. For me, it was worth fighting with everything I had. TL;DR - I would do the chemo even though I know first hand that it's not a walk in the park. But everyone is different and reacts differently so my experience is not a one size fits all. I respect each persons decision to do what's best for them. ETA I'm sorry your mom is facing this. My thoughts go out to you and your family as you are going through this. Thanks for sharing your experience. I hope that things continue to go well for you! |
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valleyview
Pearl Clutcher
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Jun 27, 2014 18:41:26 GMT
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Post by valleyview on Oct 22, 2015 21:40:56 GMT
I'm so sorry that your family is being faced with such difficult news and decisions. I can only offer hugs and hope that you can have peace with your mom's choice no matter what. She will need your love and support.
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Post by lucyg on Oct 22, 2015 22:20:28 GMT
i agree, it's crazy to say you wouldn't do it under any circomstances, when tons of people have successful treatment with chemo. Honestly i thought i was reading that wrong at first. And i'm not the kind of person who believes in 'life at any cost', but it doesn't make any sense to say no chemo ever no matter what. ? 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. |
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georgiapea
Drama Llama
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Post by georgiapea on Oct 22, 2015 22:32:15 GMT
I'm 10+ years older than your mom but have decided that if I develop cancer of any type I will not do chemo because of the possible side effects. It's a very personal decision. I knew a young mother with breast cancer who took her chemo with barely any side effects.
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