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Deb W

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  1. Like
    Deb W got a reaction from Tom Galli in My Dad's stage 4 lung cancer.   
    Welcome.   I think it's worth it to be treated.  There will be side effects, but we're all different in what we experience and how we tolerate them.  I think your father will let you know how he wants to move forward. I am a stage IV lung cancer patient and survivor.  I was diagnosed in 4/2020.  My last 3 scans have been clear.  I'm not going to say it was a walk in the park with side effects, but it was so worth it!  
    All the best to you and your dad.
    Deb
  2. Like
    Deb W reacted to islandgirls in Family Response   
    Update:
    Today he told me and I quote:
    ”I am doing the treatment no matter what (daughter) says.”
    I burst into tears, jumped up from the table and ran around to kiss him. Then I made him pinky swear. 
    I am still cautious until the port is in and the first infusion happens, but ladies and gentleman, I applaud and thank you for your assistance!

     
  3. Like
    Deb W got a reaction from GaryG in Swollen legs   
    Hi Gary,
    I went through a period of time where I had pain in my legs - no swelling and the pain went away over time.  I didn't experience severe side effects (microscopic colitis) until after 7 months of treatment.  I think we're all different as to how this drug affects us.  I would definitely ask your doctor.  How long have you had the swelling and pain?
    Deb
  4. Like
    Deb W reacted to LexieCat in Keytruda infusion question.   
    Sounds to me like you're asking, what are the chances a dose just went bad, and that's why there's no response?
    I suspect one reason that's unlikely is that the efficacy of the drug lasts beyond the time between doses. That's why, sometimes, patients take a break from immunotherapy and then go back to it. I've read that what's already in your system keeps working for some time after the last infusion. 
    My GUESS (not being a medical professional) is that if the cancer is actually progressing, it isn't just because of one bad dose. We don't get scans every single infusion, either, so what shows up on the scan might have been going on for like 9 weeks. Probably all three doses (at least) would have to be "bad" for that to happen. 
  5. Like
    Deb W reacted to Jennedy in Family Response   
    @islandgirls i was diagnosed in June 2020 with Stage IV adenocarcinoma with mets to my right clavicle. I started with a targeted medication, Tagrisso, but it didn't work for me. I have since started on chemotherapy Carboplatin, alimta, Keytruda. Before those meds are started I get an IV of steroids and Zofran to help with side effects. Everyone is amazed that I am doing as well as I am.  I have had very little nausea. I am tired. I'm not myself. But I am here and feeling pretty  darn good. I can enjoy time with my daughters, grand daughters, friends, siblings,  mother and husband. My daughters would be angrier with me if I wasn't trying to fight this.  I know they will suffer when I'm gone. And I know they don't want to seem suffer now. But they will also help me in any way that they can to alleviate that suffering. 
    In September, I will dance at my youngest daughter's wedding. Cancer be damned!
  6. Like
    Deb W reacted to Tom Galli in Family Response   
    Islandgirls,
    Have I faced the choice of treatment, knowing odds were not in my favor but chose to do it anyway? Yes. Note I did not include the portion of your boyfriend's question "risking putting your family through suffering". I pondered that statement for a long time before attempting this answer. My life, like all others, will end someday. My family will grieve my passing. Despite my best efforts, I cannot postpone my expiration date nor the associated grieving. These two realities seem to be an unalterable fact of life.
    I've experienced many gruesome treatments and side effects and unplanned effects in my battle to stay alive. My family kept a close vigil. They were saddened by my condition but did they suffer? I asked my wife and daughter this very question and their answer was an unqualified no. My daughter was upset because she was unable to influence outcomes. My wife wanted to ensure I was not in unnecessary pain. I was on death's edge on several occasions but there was no suffering. The drugs administered while in a medically induced coma erased my short term memory so I have no recollection of the plight that rushed me to the ICU.
    As best as I can determine, we only get one chance at life. If we choose treatment for lung cancer, we get a chance at life extension. If we don't choose treatment, we'll experience a shorter lifespan. This is the decision I faced. I believe the mathematics principal of simplifying the equation before solving applies in this situation. Simplified, the equation resolves to life or no life.
    Stay the course.
    Tom
  7. Like
    Deb W reacted to LexieCat in NSCLC Lung adenocarcinoma (Stage IV A)   
    Can you get him to take a look at the posts here? If he opts out of treatment altogether, he has probably a matter of months (and he's likely to have poor quality of life in the meantime, as the cancer progresses). On the other hand, if he treats it, he COULD have 10 years or more of good quality life. Maybe even longer. No guarantees, but at least it's a chance.
    You don't have to badmouth his daughter, just tell him you've been so encouraged by the experience of so many people with advanced lung cancer, who are MANY years out from their diagnoses. I get your hesitance to overstep your place as a non-family member, but this is a matter of life and death. And it seems to me he is hearing bad information.
    And just in case the idea of getting the port upsets him, I can't say enough great things about my port. It makes getting my chemo, and blood work, as easy as pie and virtually painless. 
     
  8. Like
    Deb W reacted to LexieCat in NSCLC Lung adenocarcinoma (Stage IV A)   
    Same for me--I have Stage IV adenocarcinoma, have had a great response to the triplet and am now on the same combo of Alimta (pemetrexed) and Keytruda (pembrolizumab) as Gary.
    I didn't have brain mets (I do have a small bone met). Often radiation is used to treat brain mets. Any talk about that?
    Lung cancer isn't what it used to be. We have survivors of advanced stage cancer who are 15-20 years out from their diagnoses. So not quite time to be throwing in the towel. New discoveries and new treatments are coming out every day.
  9. Like
    Deb W reacted to jack14 in Trials?   
    Whew! Well, I missed another bultet My scans and labs were good, and I had my 14th Keytruda infusion. MyCA19-9 number should be in  tomorrow. Anyway, I met with my PA Oncologist and she is incredible. I asked her about the research in regards to Dr Hulls T cells and she was acquainted with it and said that the blood that he has supplied is being studied extensively by researchers here in the US as well as many other Countries and the timing is perfect as there is an unprecedented amount of research into T cells and immunology, going on. Personally, I suspect that Dr Hulls super T cells may even hold a cure for many other things. like covid 19.
    Anyway, I along with many many others, including my PA, are praying for a cure for all of us with cancer, and soon.
     
  10. Like
    Deb W got a reaction from jack14 in Trials?   
    Hi Jack,
    ?
    This drug was approved for METex14 skipping:  http://media.emdserono.com/2021-02-03-FDA-approves-TEPMETKO-for-Patients-with-Metastatic-NSCLC-with-METex14-Skipping-Alterations
  11. Like
    Deb W reacted to MJ1950 in NSCLC Lung adenocarcinoma (Stage IV A)   
    Do not skip treatment.  I am a 14 year survivor.  There were no targeted therapies when I went through cancer., But sometimes the tried and true work well also.  I had very few side effects other than loosing my hair (it grew back) and extreme fatigue. Keep working with the doctors, things are rapidly changing.  Btw, your mom is younger that me and I would try chemo again if needed.
    Jean
  12. Like
    Deb W got a reaction from GaryG in Keytruda   
    Hi Tom,
    I had a recurrence and PDL of less than 10% and Keytruda worked for me.
    Good luck.
    Deb
  13. Thanks
    Deb W got a reaction from TJM in Keytruda   
    Hi Tom,
    I had a recurrence and PDL of less than 10% and Keytruda worked for me.
    Good luck.
    Deb
  14. Sad
    Deb W reacted to Roz in Phase I Clinical Trial   
    So, on December 1, I started a Phase I clinical trial (RMC 4630 + Cobimetinib) in the hopes of stabilizing or slowing the growth of my Stage IV NSCLC KRAS G12D mutation.
    However, after 8 weeks, the CT showed accelerated growth of the cancer in both lungs so I'm now off the trial.
    There don't seem to be viable options for KRAS G12D.. The onc is suggesting Taxotere.
    Anyone know of anything that is working with KRAS G12D?
     
    Thanks,
    Ro
  15. Like
    Deb W reacted to Tom Galli in Freshly diagnosed, not super excited about it   
    Curry,
    Welcome here.
    One can spend time pondering the why of a lung cancer diagnosis. I believe time is far better spend moving down the diagnosis path towards a treatment plan. These days, there is substantial life after lung cancer, thankfully!
    You've had a biopsy (indicated by your mentioning of NSCLC) but you don't disclose the subtype of NSCLC. It comes in 3 flavors: adenocarcinoma, squamous cell and large cell. Of these, targeted therapy only applies to a small population of those with adenocarcinoma. Immunotherapy, however, is our Stage IV treatment godsend! It may treat all NSCLC flavors; it thankfully is showing results with deadly small cell lung cancer. Here is information on targeted therapy and immunotherapy. The genetic screening or as we refer to it, biomarker testing will disclose which of these methods will produce the best results.
    At Lungevity, we do not comment on specific treatment providers except in a general sense. These three general categories might be termed as: neighborhood clinic, hospital, cancer research hospital. The first principal of treatment is that you feel comfortable and trusting of your medical oncologist. At Stage IV, your medical oncologist (also called a hematologist and oncologist) will be the quarterback of your team. Also playing will be a radiation oncologist and a pulmonologist. Some medical oncologist who specialize in lung cancer treatment are rebranding as thoracic oncologists. The results of biomarker testing might also influence your choice of a treatment location. If you have a rare biomarker, then you might seek out a cancer research hospital. If you don't have actionable biomarkers, you might be better served at a neighborhood clinic. In our disease, lines of treatments (method & type) are governed by what is termed a National Standard of Care. So if one has vanilla (my term) lung cancer (a type not having actionable biomarkers or immunotherapy suitability), you will receive the same method and type of treatment at a neighborhood clinic as in a cancer research hospital. I'm a long tenured Stage IV survivor. Here are my suggestions for surviving lung cancer that includes information on choosing physicians.
    To your disability question. During my first line treatment (30 sessions of fractional radiation with concurrent weekly chemotherapy), I chose to use short term disability. My first line treatment purpose was to allow surgery and though successful, I endured many complications. After removal of my lung and resolution of complications, the Social Security Administration declared me disabled. I sent the check back and returned to work while undergoing chemotherapy to address a metastasis after surgery. I continued employment for 9 years until stress, chronic pain and difficulty sleeping combined to make my life miserable. Then I sought and obtained disability. As a Stage IV patient, Social Security Disability is normally an easy determination. Here is information on applying. But be mindful that if you are employed with health insurance benefits, there is a 24-month delay in the start of Medicare when one is found to be disabled by the Social Security Administration.
    For me, work was an outlet that allowed me to feel productive and engaged in society. I liked the challenge of my job until the challenge started gnawing at my chronic pain. 
    But, I've found that lung cancer is a disease of life. I've learned to embrace living over worrying. Likely you've consulted "Dr. Google" about survival statistics. You might read and ponder this instead.
    Welcome here. I think you'll find this is a good place to learn about lung cancer and realize that life after diagnosis can be rich and meaningful.
    Stay the course.
    Tom
  16. Like
    Deb W got a reaction from jack14 in METex14   
    Hi,
    The FDA approved a new drug for METex14 patients:
     
    http://media.emdserono.com/2021-02-03-FDA-approves-TEPMETKO-for-Patients-with-Metastatic-NSCLC-with-METex14-Skipping-Alterations
  17. Like
    Deb W got a reaction from Rower Michelle in METex14   
    Hi,
    The FDA approved a new drug for METex14 patients:
     
    http://media.emdserono.com/2021-02-03-FDA-approves-TEPMETKO-for-Patients-with-Metastatic-NSCLC-with-METex14-Skipping-Alterations
  18. Like
    Deb W got a reaction from Judy M2 in METex14   
    Hi,
    The FDA approved a new drug for METex14 patients:
     
    http://media.emdserono.com/2021-02-03-FDA-approves-TEPMETKO-for-Patients-with-Metastatic-NSCLC-with-METex14-Skipping-Alterations
  19. Like
    Deb W got a reaction from LouT in I had my six month review with my Oncologist today   
    That's great news!
  20. Like
    Deb W reacted to G.A.M. in I had my six month review with my Oncologist today   
    I went to see my Oncologist today. Latest CT scan results are NED. I go again in three months, but no scan. Just bloodwork. The Insurance company probably balked.
    I'm grateful to you all for your good wishes and prayers, no matter what.
    Best,
    Glenn
     
  21. Like
    Deb W reacted to Rower Michelle in What happens when Tagrisso stops working?   
    Hi Susan- wow that post was a looong time ago!   I’m still here, in remission, 27 months on therapy.  Never let go of your hope!!
    Michelle
  22. Like
    Deb W reacted to LouT in Introducing myself   
    Kata,
    Like others here, I'm sorry to hear about your Mother's cancer.  Gary and Bridget have already pointed out that there is "Life Besides Cancer".  If there wasn't, then what would be the purpose of wanting to survive it.  Learn all you can, share success stories with your Mother and live life with her.  Go out for a walk, do anything you can (during this crazy time of Covid), but make life fun and rewarding.  Cancer may well be the thing that takes any of us survivors out, but maybe not.  Chances for our survival get better every day and my belief is; "I will never be as young as I am today or as well as I am right now, so I'm going out to live."   I'll have to deal with tomorrow when that time comes.  As a caregiver it can be especially taxing to worry about your loved one and not always know what to do.  We have a guide for caregivers and that can be found here.  I hope it offers some ideas for you make the journey easier for you and your Mom.
    LOu
  23. Like
    Deb W got a reaction from LouT in MET EXON 14   
    Hi,
    I have MET Exon 14 skipping.  I was stage 1B in 3/19, had surgery ULL lobectomy and had clear follow-up scans.  In 4/20 I was diagnosed withI stage IV, recurrence micro metestases.    I have been in remission since August.  I did not learn of the MET mutation  (2nd opinion oncologist found it) until after I had already been put on carbo/alimta/Keytruda (changed oncologists).  They felt it was better to continue with this plan since it was working.  I have been on a maintenance plan with Keytruda,but now after 7 months  I've developed colitis so I'm on hold with the Keytruda.  I have been able to work through this ordeal, but I don't think I would have been able to had I not had my own practice and limited the number of clients I see.  I'll be meeting with my oncologist on Tuesday, and since I'm having the GI issues, maybe it's time to switch to a targeted therapy drug?  I'm not sure how we'll proceed.  I don't know the answer  to your last question.  Thanks for the reminder of the MET Crusaders.  I did join that group, but haven't been on the site.
    Deb
  24. Like
    Deb W got a reaction from GaryG in MET EXON 14   
    Hi,
    I have MET Exon 14 skipping.  I was stage 1B in 3/19, had surgery ULL lobectomy and had clear follow-up scans.  In 4/20 I was diagnosed withI stage IV, recurrence micro metestases.    I have been in remission since August.  I did not learn of the MET mutation  (2nd opinion oncologist found it) until after I had already been put on carbo/alimta/Keytruda (changed oncologists).  They felt it was better to continue with this plan since it was working.  I have been on a maintenance plan with Keytruda,but now after 7 months  I've developed colitis so I'm on hold with the Keytruda.  I have been able to work through this ordeal, but I don't think I would have been able to had I not had my own practice and limited the number of clients I see.  I'll be meeting with my oncologist on Tuesday, and since I'm having the GI issues, maybe it's time to switch to a targeted therapy drug?  I'm not sure how we'll proceed.  I don't know the answer  to your last question.  Thanks for the reminder of the MET Crusaders.  I did join that group, but haven't been on the site.
    Deb
  25. Like
    Deb W reacted to Rower Michelle in Scan Results, good news!   
    Thank you all, your encouraging words helps keep me in the game.   I’ve spent the last two weeks advocating for individuals with serious illness to be prioritized for the COVID vaccine.  I’ve gotten support from the local media & the legislators.  The Governor shows no signs of retreat.  Meanwhile my cancer center is all over social media bragging about how they’ve all been vaccinated “to keep their cancer patients safe”.  What a load of BS.  I haven’t seen my oncologist I person for a year now.  We’ve been in Zoomland.   The hypocrisy of the cancer cancer administration is absolutely stunning.   
     
    @RonH it’s always good to hear from you!  Yes, 27 months on Alectinib with the weight gain to prove it.  I’ve been listening in to the Sunday AlKtALKS, always learn something new.  
     
    Carry on!  
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