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Steff

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Posts posted by Steff

  1. Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...

    Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  

    My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.

    I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  

  2. Katum31,

    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.

    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.

    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  

    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  

    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.

    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.

    Take care,

    Steff

  3. Hi Susan

    I'm very sorry to hear about your diagnosis. A cancer diagnosis is a punch in the gut for everyone involved. So many unanswered questions and so many unknowns.  You are in good company here.  There are many late stage lung cancer survivors who will be introducing themselves soon.  The diagnosis, staging, and other various testing always seem to take forever. That was the worst part in dealing with my mom's diagnosis - the waiting.  I am glad you found this site. The Lungevity site has a lot of helpful, easy-to-read info that most of us here have benefited from.  We are here to help you navigate through this challenging time in your life.  

    Take Care,

    Steff

  4. Simeon,

    Lobectomies are a common treatment for cancer, the fact that the lymph nodes were clear of cancer is really good news!!  My mom had a right, upper lobectomy as well, she was 61 years old at the time and has multiple other health issues.  Her recovery from the surgery was a long road, but she recovered fully and had been breathing better than she had in a long time because most of the COPD that she had was in the lobe they removed.  As far as being active to help recovery, "active" will probably look very different for her for awhile.  Her body needs to adjust to not only having a portion of a major organ removed, but also will learn how to deal with having less lung capacity - for many people, they do just fine with a lobe or entire side of a lung removed.  She just needs to get used to it.  She also just went through major surgery, so there will be pain and loss of energy just from the surgery.  She also may be affected by the infection, so be patient with her.  Be sure that if she isn't up and moving much that she is doing any breathing "exercises" that her doc suggested or that were being done while in the hospital - this will help from getting pneumonia.  If she get's a tiny bit better every day, that's moving in a positive direction...it's just a long process.

    Helpless is a feeling we all feel whether we are the patient or the caregiver.  Every. Single. Thing. is taken out of our control when we are dealing with cancer, we've all felt as you do and many of us still feel completely helpless.  Will your girlfriend be receiving any type of treatment for the cancer in her breast?

  5. Don't worry Simeon, we will get any message that you post on these forums. Many of us use the "Unread Content" button on the forum's main page. So no matter what topic you post in, we will see your message. We are in all different time zones throughout the world, so there may be a short delay in someone responding to you, but we will respond. Hope all is okay.

  6. 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

  7. Hi Carolyn, glad you have shared your story. Another member called "All Over the Place" was just asking about Afatinib as her mom will begin her treatment with it soon. I have recently heard great things about the drug and am so happy to hear it is assisting in your battle and I am doing my official goofy NED dance for you. I hope all goes well with your next MRI.

    Take care, 

    Steff

     

  8. Diamond,

    Was your dad receiving radiation near his throat or vocal cords? If so, that could be a reason for loss of voice. My mom's current cancer is on her trachea. Her voice has been affected since July. She didn't have a voice for an entire month. Come to find out she had a large pleural effusion and a bad case of pneumonia. So be sure to keep an eye on your dad's blood counts...every sign of infection was there in her blood counts but the doctors didn't pay much attention because she wasn't running a fever. 2 other reasons why my mom loses her voice - breathing troubles/low oxygen level and persistent cough causing everything in her throat area to become inflamed.  Currently her treatment regimen is working and her cancer has not progressed, but she continues to battle cancer related ailments.

    So, what I'm saying, my mom usually loses her voice due to things caused by cancer, but not because the cancer has progressed. I'm not saying that your dad's loss of voice isn't related to something more serious and that you shouldn't be concerned, but it may just be yet another symptom of dealing with a chronic health condition. Definitely follow up with you dad's oncologist as they may have an explanation as well.

    Take care, 

    Steff

  9. Hooray! Things are looking up!  I hope that the two of you can have a restful weekend after receiving good results.

    Like you said, reaction to radiation is different for everyone.  My mom was dealing with a very small area that was being radiated and her pain was much less after the first week or so (5-7 sessions).  She was also receiving chemo while receiving radiation.

  10. Bes,

    I think you said it best when you said the 2 hour test for your husband is grueling.  The entire cancer journey is grueling, for all of us involved. For that I am so very sorry.  I understand pain, my mom has had pain throughout her 2 lung cancer diagnoses. One thing that I have learned is to begin taking a laxative or fiber to keep things regular since it sounds like your husband has been an maybe taking narcotics for a bit. I've also learned through my mom that her pain was relieved rather quickly when she underwent radiation.  I hope that is the case for your husband as well.

    With my mom's diagnosis of NSCLC recurrence, it has seemed like it's been an uphill battle for several months.  But I can tell you that she has finally plateaued for now.  With the treatment options available to your husband, I bet he will have a plateau in his battle as well.

    I wish you both the best. Take care.

  11. Hi Holly,

    I may be completely out of line commenting on your post because I am a caregiver, not the warrior.  My mom lost her hair about 2 years ago when going through her first fight of lung cancer.  She's always had short hair and really isn't attached to it, so losing it was not a huge deal for her.  I shaved her head when she couldn't handle the shedding anymore (hair falling into her food was the breaking point for her) and it was the most intimate time.  It was a way to "pamper" her and save her from having to do it herself or go to a salon.  She never lost her eyebrows and her eyelashes fell out after treatment was over and were gone for about a month.  A few things that she really likes now - her hair grew back wavy (which she has always wanted), and her leg hair is still mostly gone (fabulous during swimming season!!).  She got a free wig from an agency that helps with those things, but only wore it once.  The one thing she really used the most was a soft knitted beanie.  Her head got cold easily and she wore it all day at home and especially when she slept.

     

  12. Hi Diamond,

    I am sorry to hear about your father. I too, have a mother battling lung cancer - a recurrence of NSCLC. My mom is quite strong, as many mother are, but there are days that I see she is tired.  She is also a caregiver for my dad who is disabled due to a movement disorder. I feel your pain, fear, and sadness.  I'm not sure if you live in the U.S. but if you do and haven't gotten in contact with a local agency on aging, they can be a big help.  My mom works with our local Aging and adult Care office and they have been really helpful for her - providing various supplies and education on what's available to them.  She still refuses to get a caregiver for my dad as she still wants to do as much as possible, but knows that the option is there.  

  13. All Over the Place:

    Here are the basic definitions of targeted therapy and Immunotherapy - they are different, but both can be equally effective.  I've also included the links to the Lungevity pages that have more information.

    Targeted cancer therapies are a type of biological therapy that aims to target cancer cells directly. They target certain parts of cells and the signals that cause cancer cells to grow uncontrollably and thrive. These drugs are often grouped by how they work or what part of the cell they target. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy

    Immunotherapy is considered a type of biological therapy. It aims to enhance the body’s immune response and stop lung cancers from escaping from the immune system. Immunotherapy is a treatment that strengthens the natural ability of the patient’s immune system to fight cancer. Instead of targeting the person’s cancer cells directly, immunotherapy trains a person’s natural immune system to recognize cancer cells and selectively target and kill them. https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/immunotherapy

    I'm not sure that someone would receive both targeted therapy and immunotherapy, but I have heard of people receiving radiation and immunotherapy at the same time.  And Keytruda (which is an immunotherapy for those with the PD-L1 mutation) is now recommended to have chemo combined with it during the first 8 or so treatments.

    The doctor may not be considering radiation at this point because they are considering surgery.  For my mom's situation, if they would have been able to remove the final lymph node that was involved, she would have not had any follow up treatments.  But be sure to ask why they are choosing this specific treatment plan. If they do not give you and your mom an answer you understand, continue to ask questions until you do understand. And never be afraid of looking for a second opinion.

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