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LOVEMAMA

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Posts posted by LOVEMAMA


  1. On ‎7‎/‎23‎/‎2018 at 10:24 AM, Steff said:

    Well, the good news is that there is ABSOLUTELY NOTHING WRONG with my mom's heart. The bad news is there is ABSOLUTELY NOTHING WRONG with my mom's heart.  I feel weird saying that. 

    It only took 10 minutes for the doc to see there is no plaque build up and no need for stents. All looked good with her heart.  When I asked why the stress test showed there was an issue with the bottom of the heart, the doc replied that stress tests are about 85% accurate while the procedure she had was 100% accurate.  Soooo, back to the drawing board on why she is having shortness of breath.  The next issue I will bring up is her low TSH for her thyroid. It continues to drop and really dropped back in February when this all started. Her oncologist doesn't want to listen and says everything is fine so I will wait until the regular doc is back from maternity leave and address they thyroid with her.  I am looking for ANYTHING to blame this on besides Keytruda.  She is doing too well on it and we are scared to switch to something else.  If anyone has any thoughts or advice on where to look next or switching from Keytruda, I welcome it.  She does have a CT in a few weeks and a follow up with her pulmonary doc to see how things look.  Maybe there will be an answer there.

    But, since this is a post about finding HOPE, here is the bright side:

    Next weekend, my mom is selling her handmade gifts just outside a local concert venue.  There is a 3 day country music festival happening and she has made a bunch of red, white, and blue tutus.  All money made goes to Lungevity!!!

    August 3rd is my mom's birthday, she will be 64 years young!

    In September, we have the Rod Stewart concert. My mom may be dancing with oxygen, but she will be dancing!

    My mom attending a sewing club that meets monthly and she made a new friend! Her best friend died 6 years ago and she has been pretty lonely since. It's so cute to hear her talk about her new friend!!

    These are the things I think of when I get down. My mom is living her best life despite the challenges of health issues.  

    Take Care,

    Steff

     

    PLEASE SAY HAPPY BIRTHDAY TO YOUR MOM FOR US :) 


  2. On ‎6‎/‎29‎/‎2018 at 11:16 AM, ThePurplePlace said:

    Dennis,

      I was not on Keytruda but was put on Opdivo, after first having Chemo (back in 2015).  I had done quite well on Chemo (Carbo and Alimta) for some time, but then had progression, so I had Radiation and quickly moved on to Opdivo.   At the time the Immunotherapy drugs had just received FDA approval and because I had NOT been tested for PDL1 (at biopsy, as is now done), my Oncolgoist choose Opdivo, so I could start right away.   She did not want me to have to go through a new biospy have to wait for results, because the cancer was quite aggressive.   At that time, to use "Keytruda" you needed to have a high PDL1 expression, but that was not required for Opdivo and that's the major reason she chose it for me.   

     Happily, I had an excellent response to Opdivo and it quickly shrank my tumor/nodes.    I did develop low-grade Pneumonitis (known side effect) and eventually had to stop treatment, but have now been "Stable" ever since (22 months and counting).   Needless to say, I am very thankful and very happy with my results despite the side effects.  I feel Opdivo saved my life.

      Please be very cautious about the side effects (they will most likely provide her with a long list of potential side effects) and advise if/when she should call in, they ALL should be reported as these treatments are still considered "new" and we are still learning a lot about them.  Immunotherapy for some has amazing results, and for others there are side effects and/or results that are not as promising.   I sincerely hope your MOM will be an excellent responder. 

    Best of luck,

        Lisa   

    NOTE:  I am Stage IV NSCLC patient and also started with a Brain Met, Pulmonary Embolism and the tumor/nodes in my Right Middle Lobe.  Today, I am stable with only a tiny "under 12 mm" spot in my right lung.  My Brain MRI is clear and has been ever since I had Cyberknife back in 2015.  I still have "lingering" signs of Pneumonitis (totally asymptomatic) which moves around in both lungs, but causes me no problems.   My PE is also clear and I'll be on blood thinners forever, but am doing well on Xarelto.   

    The new "Triplet" (Carbo/Alimta and Keytruda) was also not available when I was diagnosed, but has become very popular and seems to be working great for many.  This combo was FDA approved in May 2017.  

    GREAT UPDATE! REALLY HAPPY FOR YOU!!!!!! Hope the PD1 treatment could save more life in the future!


  3. 32 minutes ago, Judy M. said:

    LOVEMAMA

    I also have bone mets and will share what little I know. Had a procedure called Ablation and Cementoplasty on a met in my hip. Basically, they drilled into the tumor and placed electrodes and used heat to try to destroy the tumor then injected bone cement (a substance even stronger than bone) into my hip to strengthen it. I'm seeing an Orthopedic Surgeon next week to deal with 2 more mets that showed up on most recent scan. These are also in my left leg. So, I'm thinking some sort of surgery will be done to remove those and strengthen my bone. Also, is your mom in pain? My bone mets have caused me a lot of pain, but this isn't always true for everyone. If so,  radiation can help with the pain. Just throwing out a few options you might want to check into.  

    Judy M. 

    Thank you very much Judy, My mother feels pain on her left back sometimes, (I think it is the the left 3rd rib).

    Not pain for the rest of the body yet.... The doctor ask the same question about the pain and he said will do the PD1 treatment first to see the response, if the pain raise, he will give some medicine base on it.

    I am really shocked yesterday when I saw the result of the CT which shown Pathologic fractures visualized in the left iliac bone and around posterior arch the left 3rd rib....

    I feels 10 times hurt than my mother to my heart.... feels very bad.....

    I will go to hospital now with my mother and father to do the first treatment of PD1....

    Thanks again


  4. 49 minutes ago, LexieCat said:

    I know Judy M. has been dealing with bone mets.  I'm sure she will be along in a bit to share about her experience.  Some of her treatment was pretty painful, but her doctors have a plan, and she's soon going to be seeing an ortho specialist.  

    Some folks have had great results from Keytruda--hope it works for your mom.

    Thank you very much Lexie, hope Keytruda could do the MAGIC!


  5. Met Dr yesterday, this is the CT update after 4th chemo:

    revisualization of a left hilar mass, resulting in significant narrowing of the upper lobe pulmonary artery and its segmental branches, there is also mild narrowing of the main left and the left lower lobe pulmonary arteries, but this is has significantly improved since the CT in April 2018. The mass encases the left main bronchus resulting in very mild narrowing. it also encases the left upper lobe bronchus with its segmental branches, resulting in obstructing of some of the segmental and sub segmental branches, unchanged, there is further volume loss of the left upper lobe since the previous examination, the mass is difficult to measure due to its irregular shape, but may have slightly enlarged since the examination in May.

    The main left hilar mass seems to have enlarge since the previous examination. Ne pulmonary nodules are seen in the left upper lobe. The rest of the numerous pulmonary nodules have mostly remained stable, although a few has slightly enlarged the interval.

    Mediastina lymph ns have some remained stable and some enlarged in interval.

    Metastatic hepatic lesions have some remained stable and some enlarged.

    Metastatic disease to the bones has progressed in the interval.

    Pathologic fractures visualized in the left iliac bone and around posterior arch the left 3rd rib.

     

    Will start the 1st treatment of the Keytura this afternoon at 3:00PM.

    I am worried about the bones and Pathologic fractures.... what we could do on that?


  6. CT update after 4th chemo:

    revisualization of a left hilar mass, resulting in significant narrowing of the upper lobe pulmonary artery and its segmental branches, there is also mild narrowing of the main left and the left lower lobe pulmonary arteries, but this is has significantly improved since the CT in April 2018. The mass encases the left main bronchus resulting in very mild narrowing. it also encases the left upper lobe bronchus with its segmental branches, resulting in obstructing of some of the segmental and sub segmental branches, unchanged, there is further volume loss of the left upper lobe since the previous examination, the mass is difficult to measure due to its irregular shape, but may have slightly enlarged since the examination in May.

    The main left hilar mass seems to have enlarge since the previous examination. Ne pulmonary nodules are seen in the left upper lobe. The rest of the numerous pulmonary nodules have mostly remained stable, although a few has slightly enlarged the interval.

    Mediastina lymph ns have some remained stable and some enlarged in interval.

    Metastatic hepatic lesions have some remained stable and some enlarged.

    Metastatic disease to the bones has progressed in the interval.

    Pathologic fractures visualized in the left iliac bone and around posterior arch the left 3rd rib.

     

    Will start the 1st treatment of the Keytura this afternoon at 3:00PM


  7. 2 hours ago, Mally said:

    Hi Lovemuma. Sorry to hear about your mum and we all know about the earthquake feeling but we also know how things can settle down once we get treatment started...I had surgery Jan last year and was stage 3A and followed up with 4 rounds of chemo which worked for 6 months and then some lymph nodes were seen to be enlarged in my chest on the next scan and largest measured 26mm so I'm currently on opdivo which is an immunotherepy and today I got the results of my latest scan showing it's only 2mm so I'm hoping next scan that it cant be seen at all so you have a good reason to be hopeful with the new treatments available today ...

    That's great news Mally, so happy for you.

    Hope Keytuda could work for my mother too.

    We will go to see the doctor tomorrow for the 2nd CT scan report after the 4th chemo.

    Friday we will start to use the Keytuda immunotherepy..


  8. 58 minutes ago, Roz said:

    Hi,

    So sorry to hear about your mother's diagnosis. She is lucky to have you there to support her.I  found that my daughter was my greatest source of support and she came with to all of my appointments. My son was supportive as well but as he lives out of the state, couldn't come with to appointments.  I was diagnosed in Aug. 2017 and had two surgeries, Sept and Oct 17.  They call it stage 4 and I did some chemo from Jan thru end of Feb. I have CT scans every three months and there is NED. Continue to believe and know there are lots of us out here that are moving forward with our lives in the face of lung cancer. These forums have such wonderful and supportive people so that if you have any questions, don't be afraid to ask. Sending you and your mom tons of positive energy!!

     

    Ro

    Thank you so much Roz, we will go to see he Dr tomorrow for the blood test and will start the IMMUNE PD1 Keytruda on Friday.

    Hope we all get good response :)


  9. 4 minutes ago, Faithpower said:

    Welcome!  I was started on Optidivo as a second line in December of 2015. It is still working. PTL!  Immunotherapy is amazing. I don’t know a lot about the difference between Optivido and Keytruda but immunotherapy is making all new statistics!  I pray that it works wonders for your mom  like it has for me. 

    What a great outcome for you Faithpower!

    Hope my mother could have the same outcome as yours.

    For the bone progress, I hope the immunotherapy could control it too!

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