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LOVEMAMA

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  1. Like
    LOVEMAMA got a reaction from bes in Symptom alleviation with Keytruda - quality of life   
    Hello Dr Bee,
    If your husband's PDL1 score is 99%, it worth to try it....
    My mothers score is 10%, we tried it and hope it could work!
    She got fever and feels tried.... but we should try it...
  2. Like
    LOVEMAMA reacted to Steff in Keytruda, 1 year later   
    Hi all,
    Since my other discussion thread was getting quite long and it's been 1 year since my mom started Keytruda, I decided to start a new thread here, where it might be better seen by those who are looking for information on immunotherapy.  
    So, the 1 year update on my mom....she survived and lived to talk about it!!!  She got her CT results yesterday and it was all good news....area around the cancer is stable and may look better (inflammation-wise).  We have not been able to see the mass on the back of her trachea since October (2 months after beginning chemo + Keytruda).  It still could be there, but it is not causing any problems.  I don't know if the term NED will ever be used with her since we cannot get a perfect picture of where the mass was, so we are just using the term "stable".  So, for us, "stable" is great news!!!  There is a "shadow" that is showing up in her left lung that appeared out of nowhere.  Her pulmonologist thinks it is most likely some inflammation or infection - he will keep an eye on it, but is not alarmed by it.
    Her shortness of breath still persists, she has 1 more heart test to do to see if that is the problem.  If it is not, we are to the point where we will likely accept shortness of breath as a new normal for her.  Luckily, her pulmonologist does not believe that Keytruda is the culprit, so we plan to stay on it as long as possible.
    Keytruda side effects: severe itchy skin - it drives her crazy especially at night.  She currently takes Benedryl at night if itching is out of control and she has also found an Aveeno excema cream that relieves itching for a bit.  Although the itching is bothersome for her, she would rather deal with it than cancer.  Other side effect, but it is controlled by meds is her thyroid.  She had a slow thyroid to begin with. It got slower, she just increased her meds and it is now controlled - no big deal.  Docs keep an eye on it and increase/decrease thyroid med dose when needed.
    This time last year, I felt hopeless.  My mom's lung cancer recurrence was a punch in the gut.  I was heart broken when we were told that due to the location of the mass, it could not be surgically removed, nor was it recommended for the first treatment attempt to use radiation (some of the mass was in the original radiation field from her previous bout of lung cancer).  So came the recommendation of Keytruda + Alimta/Carbo.  I was unhappy and scared of this new "immunotherapy stuff".  But this"immunotherapy stuff" is the best thing that has happened for my mom's lung cancer.  If you are a newcomer to lung cancer and/or immunotherapy, do know there is hope.  My mom has more hope now of surviving cancer than when she was originally diagnosed in 2015.  And it is all due to continued lung cancer research and development of new treatment options.  
    My main take away from this last year is: 1) My mom is tough as nails, 2) Even in the darkness of a lung cancer diagnosis, there is hope.
    Take care,
    Steff
  3. Like
    LOVEMAMA got a reaction from Steff in Keytruda, 1 year later   
    "stable" is great news indeed!
  4. Thanks
    LOVEMAMA got a reaction from Steff in Keytruda, 1 year later   
    Really happy for your mother, my dear friend!
    Really proud for you too!!! It must be not easy for you too...
  5. Like
    LOVEMAMA got a reaction from Steff in Finding hope in my mom's cancer journey   
    PLEASE SAY HAPPY BIRTHDAY TO YOUR MOM FOR US  
  6. Like
    LOVEMAMA got a reaction from DrBee in Into the Fray!   
    Good luck for the treatment DrBee...
  7. Like
    LOVEMAMA reacted to DrBee in Into the Fray!   
    Dearest Dorothy, I think with the immunity, everyone has things at work for them that might not work for others, but it seems like it's worth throwing as many things at this as possible, right?
    I am so glad to hear that everything is being coordinated so well without oncology team. Clearly that sound to you as I can tell that you are extremely organized and on top of things. I do hope that he will be a good candidate for surgery - and that there won't have to be any break in his treatments. That's definitely one of the blessings about these being every 3 weeks as opposed to say every week is that I would imagine things can be done in the break.
     
    I do hope those numbers plateau - or even improve - as they did for my friend when she was getting her breast cancer chemo! It does happen. But you're right it seems as though the GI stuff will need to get stabilized for it to be a permanent Improvement.
    I think my most important take away from your whole post is that reminder of this Bittersweet but very important silver lining in all of this. It definitely shows us the beauty and value in the everyday Dash whether that is a short walk, just sitting watching silly TV together or doing a little dance. Every time he smiles, or we laugh at some stupid thing the cat has done, or he gets excited about a bird, my heart lifts. One of my friends who became a widow at age 34 advised me to try not to dwell too much in that place in the future where we might not have these guys by our side. I think it's impossible to not go there sometimes, especially at the beginning when we are in Shock. By the way I think you and I are both completely allowed to still be in shock. But hopefully as time goes on and they get stabilized and we get used to our new normal, we can just dwell in the moments that we have with them and know that we are making new memories for down the road, even if those memories will potentially for a while be painful.
     
    You're obviously incredibly strong. I would have known that regardless, but knowing that you've been through five back surgeries and come out being such a positive and proactive person confirms it!
     
     I am so glad for you that you have such wonderful family! Everything I hear about them just makes them sound better and better
     
     There's some good information about ALK mutations in parts of the lungevity site, but kind of spooky thing for this conversation is that basically we will now be using a t k i a tyrosine kinase inhibitor. This is an oral drug, and I know that folks with mutations like EGFR and  ALK+ positive mutations can use this kind of drug.  It is taken orally, rather than infused. So it arrived yesterday and we were actually able to start it yesterday afternoon! While some people do see differences in just a few days, I'm certainly not expecting us to see anything yet. but we are incredibly relieved to be underway, and a couple days early at that!
     
     I knew you guys might be really exhausted tomorrow after labs and infusion, but when you get a chance, please update on how his numbers looked and how the infusion went yesterday. Sending big hugs and tons of love to you both!
  8. Like
    LOVEMAMA reacted to DrBee in Into the Fray!   
    Hi Dorothy!  
    So sorry to hear about your ER trips and thank you so much for this (as usual, out of "likes" for the day). We have parallels: my hubby was dx'd three days before our FIRST wedding anniversary! ❤️ We too have upper lobe tumor of right lung (I believe 9x4xsomething), right hilar and mediastinal lymphadenopathy, and then stage 4 thanks to the rogue lymph nodes (axillary and supraclavicular). Your explanation of the issues with radiation given which lymph nodes are involved is actually really helpful  and helping to give me a sense of why sometimes the decision is made to not do radiation. (I assume you asked about targetted radiation like SBRT or Cyberknife as well? Not sure if the risks you describe pertain to both conventional  and targetted radiation...)

    Sounds like we will be on the same cocktail too! Just starting about 3 weeks behind you. (Not really my ideal of a fun cocktail, but we'll take it! :))

    I am familiar with ports because my bestie went through breast cancer two years ago and had one. At Northwestern we were told that we could request one but that they like to try without first, just to spare the pt going through an addl invasive procedure of port placement. Weird. I think DH right now is game to try without the port, but it DOES make it all seem a lot easier. 

    Interestingly, they are scanning after just 2 rounds (so in 6 weeks).  If it looks good they will go down to every 9 weeks. So I guess we will be getting a bit more frequent scanxiety than you! But I am ok with that because I know I will be going crazy wondering if it is working, so if it were up to me, I'd be scanning that boy every week!  Maybe it's just our onc's preference to do it more frequently,  or because he said we have  a pretty aggressive tumor on our hands (so he might want to get a sense of what's up sooner rather than later). 

    I think PDL1 of 45 sounds pretty good! 

    Does he feel any better since starting the Keytruda? Or was he not feeling bad to start with? You are SO fortunate not to have had cough or SOB. We have cough and intense GERD-like symptoms that are really wiping him out, we think possibly because of which nodes are inflamed, and we hope the Keytruda will start to work its magic on these at some point soon. 

    I will look forward to following your journey because it seems we are on the same basic treatment path (just a little behind you guys!)

    Hugs and strength, 
    Bethany
  9. Like
    LOVEMAMA got a reaction from Judy M. in Symptom alleviation with Keytruda - quality of life   
    Hello Dr Bee,
    If your husband's PDL1 score is 99%, it worth to try it....
    My mothers score is 10%, we tried it and hope it could work!
    She got fever and feels tried.... but we should try it...
  10. Like
    LOVEMAMA got a reaction from Tom Galli in Symptom alleviation with Keytruda - quality of life   
    Hello Dr Bee,
    If your husband's PDL1 score is 99%, it worth to try it....
    My mothers score is 10%, we tried it and hope it could work!
    She got fever and feels tried.... but we should try it...
  11. Like
    LOVEMAMA got a reaction from Roz in Dad diagnosed Stage 4 lung cancer   
    dd the first infusion of Keytruda last friday... Now we wait and pray together!
  12. Like
    LOVEMAMA got a reaction from Marcie in Father, 59, going through NSCLC diagnosis.   
    As you mentoned, it is important to keep in mind that they will never cure his cancer, but that doesn't mean he can't hang in there for many more years on some treatments
    Hope our family members could hang in here for many many years!
  13. Like
    LOVEMAMA got a reaction from Susan Cornett in NSCLC Round 3   
    good luck for the treatment and your trip in FL Susan!
  14. Like
    LOVEMAMA reacted to Tom Galli in NSCLC Round 3   
    Susan,
    Do this thing! Sizzle that nodule then hit the beach. You got this!
    Stay the course.
    Tom
  15. Like
    LOVEMAMA reacted to Judy M. in NSCLC Round 3   
    Susan
    Have had SBRT on 4 tumors and it is a very good thing! Plus, the easiest treatment I've had so far. 
    Judy M
  16. Like
    LOVEMAMA reacted to Johnny5 in Looking for hope and community   
    Its hard enough dealing with personally, but trying read each specific individual situation is overwhelming. It was mentioned about a "notebook". In 2016 it didnt take long before the Drs started saying "No, I havent heard/seen that and it is something I NEED!" You have to be orchestrator of barrels of monkeys in a chinese fire drill. When someone drops the ball you had better learn to dribble QUICK!
    Now If they aint got it, it is handed to them on the spot. Office Depot sells 3 ring zippered binders,- containing calendar (history) calendar (future). Folder or cover (1) "Urgent Pending," and (2) "Pending". CT & Pet Scan DVDs with the written reports. NEVER LET YOUR ONLY COPY GO! be sure it is returned. Be sure each DVD contains a viewer. A calling card holder. Medical power of attorney*, list of meds. allergies, etc.
    Accessories- YES! a composition notebook, Post It Notes, Highlighter (available in colors), extra pens, Flag tabs, clear page protectors, extra file folders, letter and legal enevolpes. As well as copys of reports, 6 Drs=6 copies.
    Experience is, that worrying about what is missing will gnaw at you just about as bad as the cancer. Keep your self from going Postal and/or crazy!
    You will be amazed if and when you have an unrelated procedure, and the comforting calm you will feel having all of your info at your fingertips.
  17. Like
    LOVEMAMA reacted to DrBee in Looking for hope and community   
    Wow, Susan! I can only imagine what that roller coaster must've been like (actually I can imagine it all too well).  Hey, you have cancer. Oh, whoops, you don't. Oh hey, not only do you have cancer but it has spread further than we thought. Blimey. The more I learn about the disease, the more in awe I am of how well-adjusted the stalwarts on this forum are. You guys are freaking super heroes. (Also, I want to import your SuperDoc!)

    Thank you for all the excellent advice.  

    Of COURSE I googled the stats, freaked myself the F out, then took a deep breath and started disaggregating. (Yay for all those quantitative methods classes I had to get through in grad school.) You are the first one to remind me that they don't take into account all the advances made recently. For some reason this makes me feel loads better. 

    I am fortunate (?!) that we just went through breast cancer with my bff. She is a widow so our other bestie and I were her main care coordinators. So, I've got the google calendar and stuff set up, plus the running Questions document, physician profiles, scans, and a bunch of other stuff in a shared google file.  I trust that more than a paper notebook -- I do everything electronically. Excel spreadsheets make me super happy. Ubernerd at your service. 

    Man, the late diagnoses are the worst! I just had a pal tell me (un)helpfully about two different folks he knew who went in for other complaints, were diagnosed with LC, and were dead within weeks. Really, he could have kept that stuff to himself right now (especially cos he didn't know anything about the type of LC that they were).  But I also realise those kinds of diagnoses are all too familiar. 

    If you don't mind me asking , what kind of LC do you have, and what treatment regimen are you currently on? 

    Thank you for your wisdom and generosity with your experience, Susan. You are amazing! 
    With gratitude, 
    Bethany
  18. Like
    LOVEMAMA reacted to Susan Cornett in Looking for hope and community   
    Bethany, my cancer is stage IV adenocarcinoma - the most common NSCLC.  I finished my second line treatment last summer for a recurrence and am not currently in treatment but that will change in a matter of days.  I have yet another recurrence so here we go for round 3.
    I understand your Excel excitement - I work for an actuarial firm (although I'm not an actuary) so even some documents that would make more sense in Word are done in Excel. 
  19. Like
    LOVEMAMA reacted to Judy M. in Looking for hope and community   
    Bethany
    I can so relate to having someone tell you stories about people being diagnosed with lung cancer then being dead just weeks later. Have had that happen also. You stand there in shock (or I did) thinking, "And exactly why was it you thought that would be helpful to me?" They are just clueless. And I'm here to tell you I was diagnosed at stage IV and am still here 1 year and 7 months later. Track record not as good as Tom's, but I'm working on it. 
    Judy M. 
  20. Like
    LOVEMAMA reacted to Tom Galli in husbands update   
    Bes,
    Pain could be a lot of things or nothing. Scans will tell the story. I understand how difficult Keytruda can be for some but if it is working, it is far better than the alternative. 
    Stay the course. 
    Tom
  21. Like
    LOVEMAMA got a reaction from Judy M. in Looking for hope and community   
    DrBee, my mother being diagnosed with lung cancer since March 2018, we did 4 chemo then did the first Keytrua PD1 treatment last Friday.
    We all working on it, be strong, your husband need your support. We are here to support you and each other...
  22. Thanks
    LOVEMAMA reacted to Tom Galli in husbands update   
    Bes,
    If it is any help, I often suffer these chest congestion episodes, especially this year. Although my doctors almost always issue antibiotics, my symptoms likely result from virus or seasonal pollen. 
    Here are some practical ways I deal with congestion. Have your doctor prescribe a “rescue inhaler”. Mine is Combivant but there are many flavors and strengths. I turn my shower on full hot and generate lots of steam. Then I use the inhaler and stand or sit in the shower for 10 to 15 minutes of course careful to avoid the scalding water. This generally leads to very productive coughing that lets me feel better. 
    I do this sometimes 3 or 4 times per day and find the steam very soothing. 
    Stay the course. 
    Tom
  23. Like
    LOVEMAMA reacted to DrBee in Looking for hope and community   
    Hi Johnny5! Thank you for reaching out and for your wise words. Definitely agree - I am glad I like researching things, because this is probably the most important project, personally, I've ever taken on. 

    I totally agree about the importance of organization! I am fortunate (?!) that we just went through breast cancer with my bff. She is a widow so our other bestie and I were her main care coordinators. So, I've got the google calendar and stuff set up, plus the running Questions document, physician profiles, scans, and a bunch of other stuff in a shared google file.  I trust that more than a paper notebook -- I do everything electronically. Excel spreadsheets make me super happy. Ubernerd at your service. My honey loves hard copy stuff, however, so I've also organized a binder for him with tabs approximating those you mention. (I'm a professor so fortunately had a lot of supplies at the ready.)

    Thank you again for the amazing advice, Johnny5!
     
  24. Like
    LOVEMAMA reacted to DrBee in Looking for hope and community   
    Hi LexieCat! Thank you so much for your kind and thorough reply.

    No, we don't know anything further than NSCLC. The biopsy was late Thursday, so prob not a surprise that we didn't hear yesterday. As you note, makes for a long weekend of waiting/worrying/hoping/feeling like the world has ended etc. Sounds like we should get final biopsy results and results on blood tests for the 6 most common gene mutations on Mon or Tues latest. 

    Yes, reading the stories of long term survivors (like Tom's and Donna's)  last night helped me feel the calmest I have felt since we got this news Thursday afternoon.  I am also trying to not get ahead of myself because we don't know yet if what we are looking at is going to follow one of these more treatable trajectories. But finding this community makes me feel like I'm not alone in the wait, and there is a community of support going forward - to which we will hopefully be contributing our own story of hope soon. 

    In terms of self-care, that is hard - but I am blessed in that my hubby is a consummate caretaker (and worrier, perhaps not so great), so he in fact ordered me out of the house to run yesterday because I was getting "too antsy."

    LexieCat, thank you so much for your reply! ❤️
  25. Like
    LOVEMAMA got a reaction from Judy M. in New life chapter: Reality Check~I have lung cancer   
    We are here to support you, you are not alone
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