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Karen Markey

Caring for Mom (trying so hard to be positive)

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Hi all.  I'm so glad I found this site with so many wonderful people willing to share their stories. I already feel like I know many of you.  MY STORY: My beautiful 79-year old mom was recently diagnosed with Stage IIIB adenocarcinoma metastatic lung cancer (to the lymph nodes in the chest area between her lungs) with a small tumor on her upper right lung (origin unknown, even following full PET scan??). The area was deemed too large for radiation and so chemo (carboplatin and alinta) was started.  She received one treatment which made her sick, "woozy" and unable to function from fatigue.  BP also dropped too low and her BP meds were halted.  2nd chemo treatment (scheduled for 3 weeks later) was delayed for blood transfusion to help with low hemoglobin anemia.  Chemo was then halted because new swollen lymph appeared in her neck.  She qualified for Keytruda and had her first treatment 2 days ago.  Dr. said absent a miracle, a "cure" is off the table.  Just not sure what we might expect going forward.  I have read through so many stories and (maybe I am searching incorrectly) but I can't seem to find anyone with the same "story" as mom.  I should also note that my sister and I are trying soooo hard to be a positive influence and keep Mom eating, getting exercise (walking), and engaging with friends.  Other difficulties include her advanced macular degeneration and the fact that she lives 35 minutes from each of us, though we strive to get up multiple times a week, take her out, prepare healthy meals, etc. and stay with her when/if needed.  I should note that she doesn't want to come stay with either of us ... she just wants to be in her own home where she has her friends and is comfortable with her surroundings (as her very poor eyesight has declined even more following the chemo treatment).  I am open to any/all advice and I look forward to connecting/learning from you.  

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Welcome Karen,

I'm very sorry to learn of your mom's diagnosis.  From your description, your mother's first line treatment of conventional chemo (carboplatin and alimta) allowed a progression (new swollen lymph node).  Your mother is now in second line therapy with a new immunotherapy drug Keytruda (I've linked the word "immunotherapy" so you can read about it). 

You are right about not being able to easily find Keytruda survivors on this site and the reason is it is a recently approved FDA drug for treatment of NSCLC. As for evidence of Keytruda's effectiveness, President Jimmy Carter is being successfully treated with Keytruda to combat his metastatic melanoma. He is not cured but the medication is keeping his cancer in check.  We hope your mother achieves a no evidence of disease outcome (NED) from Keyturda.

Your role (and your sister's) as a care giver is very important to your mother's treatment.  You are doing the right things by encouraging your mother to stay active, socialize and most importantly eat.  Macular degeneration complicates her level of activity, understandably.  

My advice -- learn everything you can about NSCLC adenocarcinoma and immunotherapy treatment.  Prepare for common side effects of the drug: fatigue, rash, joint pain, and cough. I'm sure members with first hand Keytruda experience will respond to your post and when they do, ask them questions about their experience.

Stay the course.

Tom

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Karen, 

Although my mom has a different story to begin with, she is now taking keytruda as your mom has started to. Here is her story...

Since my mom's cancer recurrence is unable to be surgically removed, she is receiving chemo + keytruda. Since your mom has had such a tough time with chemo, that is likely why she isn't receiving the combo right now. The chemo this time is really kicking my mom's butt too - severe fatigue and flu-like symptoms and anemia. She didn't have any trouble last time with chemo.

I wasn't happy to hear about my mom receiving immunotherapy versus the original treatment types at first. But now that I have done more research about immunotherapy / keytruda I am happy that she has this treatment option available to her. In fact if her original diagnosis a few years ago would have been today she would have received keytruda as a first-line treatment because it is doing such wonderful things.

With Keytruda, your mom may have the same benefits of chemotherapy without the harsh side effects, that can result in the mass shrinking so that she can have it radiated. And as long as keytruda is working, she can stay on the drug forever. My aunt has been on keyyruda for 2 years, she receives the drug for advanced stage lymphoma. She is in her mid-sixties and is a full-time third grade teacher. The only side effect that she has is skin pigmentation changes and fatigue. But the fatigue is not enough to keep her from chasing after third-graders all day.

My mom just finished her 5th chemo plus keytruda treatment. The side effects that she has battled so far are fatigue, but that is likely from chemo, and skin pigment changes which have been no big deal. And so far the treatment is working, her tumor has shrunk after four treatment Cycles.

I am happy to hear that your mom has you and your sister relatively close. I live a little over an hour away from my mom and when I am able to visit or take her to treatments it makes all the difference in the world. And although your mom's battle has changed its course in treatment, don't give up. There are so many different treatment options out there now for your mom's type of cancer. I am so very sorry you and your family are having to endure this battle but moms are tough and so are daughters.  

I'm glad you found this site and have posted...this site was extremely helpful to me and the forums are wonderful.

Take care, 

Steff

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Thanks for your post, Steph and for sharing your mom's and aunt's experiences. (I actually had to chuckle about your aunt chasing her 3rd-graders.) After hearing their stories and treatment successes, and those of others as well on this site, I am encouraged.  I generally do pretty well but every now and then hopelessness sets in (but never around mom!).  And, yes, I am so very grateful to be so close to her. Now onward to my homework... I'm trying to learn as much as I can (although sometimes it makes my head spin). I wish the very best for you all and hope to hear more continued successes.

Best,

Karen

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