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Steff last won the day on July 19

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  1. Helpingmom, I was just thinking - Is your mom also doing a chemo "cocktail" with her first 3-4 doses of Keytruda? According to my mom's oncologist, at a national cancer convention last month, they (I'm assuming the Keytruda people involved with research) announced that mixing Keytruda with Chemo increases the chances of treatment "success" from 30-50% to 55% for people with PD-L1 mutation. I'm not sure if it's the same for EGFR or ALK mutations. If you are interested in what chemo "cocktail" my mom is on, let me know - I don't have the information with me at work.
  2. My thoughts are with you and your mom. I hope her scan shows positive results (no growth or shrinkage). My mom just had her first round of Keytruda w/Chemo cocktail last Friday. I hope that you are able to share any updates with us throughout her treatment as I am sure it will benefit many on the forums. As a fellow caregiver, I hope that you are finding ways to care for yourself in the face of all of your stress. Take Care!
  3. Hi Helpingmom, I feel your pain! I am relieved that my mother quit smoking prior to her lung cancer diagnosis, but it was a big challenge for her. It has been an even bigger challenge for my father. He has attempted to quit over 20 times. Finally, he hasn't smoked in a little over a year (that we know of!) but only because he is disabled and it is too challenging to get himself outside to smoke and hold still long enough to light the cigarette (he has a neurological disorder that causes him to shake). All that being said, addiction to nicotine is tough for many to overcome. It is different from illicit drug addictions because the products are readily available and it has less stigma attached to it than someone who is using illicit drugs. Please be patient with your mom. The lies come with the addiction. The justification and ignoring other issues that are related to smoking comes with addiction as well. I finally decided that I was going to stop confronting my dad every time I knew he was smoking. All it would do is lead to more lies and more frustration on my part. Although he has not been diagnosed with cancer, so every puff he takes does not possibly make his health worse, as with your mom, it's still dangerous for him to sneak out of the house to smoke. Perhaps having one last discussion with your mom to let your know all of your thoughts and feelings about her smoking could help you to feel you've made every attempt to help. And then think about leaving the issue alone. After all, the stress of dealing with a cancer diagnosis would be enough to drive many non-smokers to smoke! On another note, if your mom is ever ready to quit, my dad had good luck with Chantix. He now takes a reasonable dose of Wellbutrin which I guess helps with the urge to smoke.
  4. Marcie, I'm happy to hear your dad has a treatment plan! I would love to hear how he does with Keytruda. My mom will be starting Keytruda this Friday with chemo and we are all a bit nervous about it because it is not the same 'ol treatments we've all come to know. Best wishes for you and your family!
  5. C.J, I'm sorry to hear that you are having to deal with all of this, especially at such a young age. My mom had her right, upper lung lobe removed in January 2016 (she is 63, obese, and has multiple other health issues). I realize it is not an entire side of her lung like your proposed surgery, but I can tell you that could breath better post surgery. We learned that the doctors really couldn't tell us whether or not she would be able to breathe better after surgery - we just had to wait and see -, which was frustrating for us just as I see it is frustrating for you. In looking for people who have had lobectomies, I came along several young people in their 30's who had their left lung removed. Most were active prior to the surgery and were able to resume most of their activities after surgery. A question we ended up asking ourselves to decide on my mom's surgery was: is a longer life (we definitely new she had cancer) worth the possibility of continues breathing issues? Our answer was YES. As far as the surgery went, yes it's a major surgery, but my mom did really well despite all of her other health issues. She was in the hospital for 6 days (a few days longer than anticipated because they removed the drain tube too soon and fluid built up in her lungs) and she did fine at home afterward. I wish you the best in choosing what choice is right for you. Please know that everyone on these forums have been really helpful to me and their inspiration and kind words help during the times when I am questioning what is best for my mom or when I am just feeling blue about the whole situation.
  6. Pearl, I am so very sorry you hare having to go thru all of this. My suggestion is to tell your husband how you feel when he isn't supporting you the way you need him to. Whatever his reason for responding to you the way he does, he needs to know how you feel about it. Many of us don't know how to respond and shut down at the thought of losing someone we love. I am not making excuses for him, but this may be the way he is currently dealing with your situation. Best of luck at your doctor's appointment today.
  7. Tom, I did receive you response before the appointment and it helped me to just come out and ask versus sugar coating it. Thank you!
  8. I think many of us are right there with you. I am a daughter/caretaker of my mom who is currently going through a diagnosis of a recurrence of lung cancer. The unknown is the worst for me. Once we had a treatment plan in place, we were able to look toward the future (we will hopefully have a treatment plan today for the recurrence). I hope that you will find the same as you go through this process. Statistics are grim, but know that they are OLD statistics. I find solace in hearing from those who are survivors on these forums. It gives a bit of hope in all of the darkness. As a caregiver, please remember to take care of yourself in all ways (easier said than done, I know!). It's okay to take time for yourself. It's okay to cry or to be pissed off. Active members on these forums are here for you and have been a big help to me. I hope you are able to stay in touch as time allows and keep us updated.
  9. Hi all, My mom finally has an appointment with her oncologist today to (hopefully) discuss a treatment plan. She has asked me for some help in talking with her doctor about why her "mass" was not detected in previous CT scans by her and her team. Here's a bit of history: She has a recurrence of lung cancer. In April she got the 1 year "all clear" based on a CT scan. She continued to have issues breathing, her new pulmonary doctor was looking through her scans to see if he could identify the problem (he was assuming a kink in an airway). He noticed this "mass" and immediately wanted to biopsy (the same scan they gave her the "all clear" with)...turns out the mass was closing her airway 70% and causing the cough and breathing issue. So, we all are quite upset that this was not caught by her oncologist and others who are in charge of looking at her scans. I know it's important to get over our frustration and focus on her future fight, but she wants to ask why it wasn't caught earlier. We don't want to offend the doctor, so I was wondering if anyone had some advice of how to bring it up so that it may not be offensive. Thanks!
  10. Thanks Tom, Yes, her cancer was biopsied and they are currently "studying" it. When we meet with her oncologist (probably next week) I will definitely ask about the biomarkers - thank you for that information as I hadn't heard of it before and will research it more before her appointment.
  11. Thank you, Lauren. My mom had surgery to insert a stent into her trachea last night. It was successful and she is breathing better than she has been in months! She feels so much better today and is ready for her fight. We have no treatment plan yet, but will likely have one soon. All I know now is the "mass" is on her trachea, where it branches off to the bronchus. Her pulmonologist says the location makes it inoperable. It is the same type of cancer she had 1.5 years ago - non-small cell adenocarcinoma (if I recall correctly). I am thankful for these forums and for folks like you to share your knowledge. We were confident with our first treatment plan for the first go 'round, but with this recurrence and it being inoperable, I know we will be second guessing ourselves as to what the right thing to do is. So I will definitely be reaching out to all of you for information.
  12. Happy to hear the positive news, Vicky! Way to be an overachiever!!! I hope that this positive news will help you and your husband to look forward to the future. Best wishes!
  13. Cindy, I am seeing your post for the first time and my response may not be timely, but I have some information on "adult" coloring books. I actually took a class on in at a local Cancer Survivorship Conference I attended with my mom last year. The person who taught it teaches art therapy and provided a lot of research to back up what she was saying. That being said, either coloring is for you or it's not! Her message was that coloring can be very relaxing for some. I personally love "adult" coloring books but never felt relaxed after coloring. Her explanation was simple - she suggests not coloring the fancy coloring pages that are of traditional things (like animals, flowers, etc) for a few reasons...1) many times the coloring page is too involved and you are unable to complete the picture in the time you have to color, this can cause stress because the picture is unfinished. 2) When we color traditional things (like animals, flowers, etc) we tend to stick with the colors we have pictured that are associated with the thing (coloring an elephant gray, water blue, grass green, etc). This does not allow our creative juices to fully flow. So she suggests coloring Mandala shapes (google Mandala coloring pages and a bunch will come up free to print). Mandala shapes are symmetrical, which our brain likes, and can be quite simple. The instructor's point was that simple Mandala shapes can be colored in as little as 10 minutes and there are no "pre-set" beliefs as to how we should color a Mandala; which allows our creative juices to flow. I bought a small Mandala coloring book and do find that it is much more relaxing than the in-depth, fancy coloring books. I actually do feel relaxed after coloring the shapes and can do it in about 15 minutes, which is about all of the time I have to relax! Hope this helps a bit, I found the information she gave very interesting.
  14. Jeffrey, My mom had her upper right lobe removed in January 2016. I've been reading your journey so far through this post and hear some of the similarities. It took her awhile (a month or so) to feel that she "recovered" from the surgery enough to resume some of her hectic daily schedule. After surgery, she had quite a bit of fluid built up and had to have some of it removed at one point. She still has some fluid around her lung from the surgery but it is slowly decreasing now on its own. We are told if may never totally go way, but not to worry - I would still be sure to have it checked as Tim said. Even more than a year later, she still has pain where her incision was, she is told that is normal due to all of the trauma that went on in that area. I wish you the best in your healing process and hope all goes well for you. Take care
  15. Thank you Tom, I really appreciate your response. Today is better than yesterday, we at least know that her surgery to have a stint placed in her bronchial tube will be no later than early next week to help her breathing. We are supposed to have the results of her biopsy this week, so I will definitely post once we know for sure the type of cancer. Thanks again for taking the time to respond. Have a good day.