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Steff

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Posts posted by Steff

  1. Hi Fadi,

    I want to make sure I know what kind of cancer your mom has - I am assuming NSCA means non-small cell adenocarcinoma????  I try to stay up on all types of lung cancer, but some get past me and just want to make sure I know what I am speaking to.

    If it is adenocarcinoma, that is what my mom had, originally staged 3a and has had 1 recurrence since original diagnosis 4 years ago.  She was on immunotherapy (Keytruda) and chemo (alimta = carbo) for 6 sessions and proceeded to immunotherapy only for about 1 year afterward.  While my mom saw shrinkage within 3 months, many do not see results as quickly.  In fact, many folks (my mom included) see "growth" early in immunotherapy treatment.  Ultimately the cancer becomes inflamed and swells due to being attacked by the immune system and looks like it is growing.  My mom had this happen after her initial tumor shrank, but other areas of her lung "grew".  Ultimately, immunotherapy is not a quick fix, nor is it a quick treatment plan.  People usually take it as long as their body can tolerate it or if docs see it isn't working.  

    While chemo + immunotherapy is a standard of care for some types of lung cancer, it is not standard for all types.  Has your mom had biomarker testing/gene mutation testing of her cancer? These tests tell docs if there are any markers within the cancer cells that make it more or less affected by certain treatments.  These tests are becoming standard here in the US, but some people still need to ask for them.  Be sure your mom requests these tests if she has not had them.

    While it is easy to lose hope when a first line of treatment does not give you the results you are looking for, that doesn't mean the fight is over.  Many lung cancer survivors have had to go through several different types of treatment to keep the cancer at bay.  Today, lung cancer is being treated as a long term, chronic condition rather than a death sentence.  There are so many different types of treatment and mixes of treatment modalities that it's hopeful that docs can find a "cocktail" that helps keep the cancer controlled or shrink away.  The road is not easy, but many people on these forums are triumphant in their journey.  So, there is hope.

    Finally, I am not familiar with alternative treatments and will not try to speak to it.  I can tell you that my mom takes a CBD tincture twice daily for chronic pain (not cancer related).  She did not begin taking it until well after her lung cancer treatment ended.  She spoke to all of her docs before starting it and they agreed that if she wanted to try it, she should.  But if she needed to go back onto immunotherapy or do a clinical trial for her lung cancer, she would need to stop using it as they don't know if/how it can interact with cancer drugs.

    Hope this helps a bit,

    Take Care,

    Steff

  2. Moonbeam,

    I wish there were words to help you in this devastating time.  Please know we are all thinking of you.  I am so sorry that you have lost the man you love, but I am so thankful he had you to the very end.  Caregiving is never easy, whether it is in triumph or defeat.  I hope you are able to take some time to help yourself heal from this trying time and that you have the support of those who love and care for you.

    Please take care,

    Steff

  3. Moonbeam,

    Firstly, I am sending all of my warm thoughts and hugs your way.  You are in this for the long haul, my fellow caregiver, and your husband is so lucky to have you.  

    Second, I think your question about the anxiety and pain meds is a reasonable one.  As you know, anxiety can do so many wacky things to us and then to add narcotics to the mix just quadruples the wackiness.  I don't have a reasonable solution for you, I am sorry.  This is probably a dumb question, but is he taking something for the anxiety? Is he taking something to help him sleep?  Exhaustion adds to anxiety and can make us less tolerating of pain.  

    I am grateful you have a best friend you can count on and is there for you...I hope she was/is able to help you cope with all the changes happening in your life all at once.  I also hope through all of this that you have some quiet, quality time with your husband periodically, even if it's just for 5 minutes.  As a spouse who is caregiving, those times are very important to keep your head in the game.

    Take Care,

    Steff

  4. Hi Gessica,

    It sounds like your dad has had quite the journey to his lung cancer diagnosis.  Many patients have had similar journeys but are here despite delays, mix ups, etc.  My mom did not have delays in her original diagnosis, but had a delay in her lobectomy because she needed to detox from her rheumatoid arthritis meds prior to surgery.  This delayed her surgery about 1 month (6 weeks total from initial diagnosis).  In that time, her lung cancer (adenocarcinoma, Non-small cell, stage 3a) did not grow or spread. Nor did the delay affect her outcome.  She was NED after follow-up chemo and radiation.  For her 1st lung cancer recurrence, her diagnosis was delayed because her docs did not see the mass.  It took a new pulmonoligist to see it and biopsy it.  The mass was likely growing for 3-6 months prior to finding it.  This delay also did not affect her treatment outcome, she has been NED for over a year.

    So, what your dad experienced is unfortunately quite common.  The important thing is that they found it and are coming up with a plan to treat it.  There will be more testing and more waiting, but that is all part of the diagnosis process.  It's normal to be worried or even angry that finding his lung cancer took this long.  I was angry for quite awhile because my mom's lung cancer recurrence was missed.  That anger fueled me to join LUNGevity and take part in these forums, so I did my best to turn it into a good thing.  Here, I found that there is HOPE and it is okay to feel optimistic.  

    I am happy your dad has a supportive person like you.  Whatever treatment plan evolves, he will need your support.  

    Take Care,

    Steff

  5. Aub33,

    If the docs not come up with any reasonable thoughts on why your father is behaving this way, perhaps you should look into the possibility of a bladder infection/UTI.  A family friend had a severe UTI a few years ago and it landed her in the ICU for about 10 days.  She was hallucinating and speaking as if she was a different person.  It was really odd.  Once the UTI was taken care of, she was back to her normal self....just a thought.

    Take Care,

    Steff

  6. St Michael,

    I've been keeping track of your mom's lung cancer recurrence journey here.  I finally feel like I might have something helpful to share.  My message is one of HOPE.  I received a punch in the gut when my mom was diagnosed with her lung cancer recurrence 3 years ago, 1 year after finishing treatment for NSCLC adenocarcinoma, stage 3a.  Her lung cancer recurred on the back of her trachea, closing it to about 30% airflow and requiring a stent.  At original diagnosis, testing for mutations was too new, but with her recurrence, she found that she had a high PD-L1 level and was a good candidate for immunotherapy.  So, not only was my mom diagnosed with lung cancer AGAIN, their treatment recommendation was not the traditional one (chemo and radiation), they were suggesting this new, fancy immunotherapy drug.  I was doubly scared and feared the worst.  It took me nearly a year to calm down and accept that my mom had lung cancer again. That is where I began to understand that these days, lung cancer is often being treated as a chronic disease (as you mentioned).  My mom already has a couple of chronic conditions - rheumatoid arthritis and diabetes, what's another one! lol   My mom's road to NED was not a walk in the park, but she made it.  

    We have just surpassed 4 years since initial diagnosis.  My mom has decided to call herself a lung cancer survivor rather than saying "I have lung cancer".  According to the statistics, my mom isn't supposed to be here.  Nor are many others on this forum.  Statistics/progression free survival/etc is not who your mom is, nor does it define my mom.  Originally, my mom asked her doc if she was just buying time.  Her doc said "yes".  Well, the time that my mom "bought" has been great.  She lives her life to the fullest and has recently tried new things like painting and going to hockey games.  Honestly, we both feel that our lives are fuller because my mom is a lung cancer survivor.  The journey here was hell and I definitely would not have said this 2 years ago. This is probably not the last time my  mom has to deal with lung cancer.  We've both accepted that, but when it does recur, we know that treatment advances with again help her to buy time.  

    I know that your mom has a long road ahead, but please know there is HOPE.

    Take Care, 

    Steff

  7. Jenny,

    I'm sorry to hear about the troubles your husband is having.  My mom had to have fluid drained from her lung several times during her most recent bout of lung cancer.  What we learned through this process is that the ER is not the best place to decide how much fluid is too much.  If your husband is having trouble breathing due to the fluid build up, he should probably have it drained.  Is he involved with a pulmonologist yet? Or are you able to get with the doc who drained the fluid to ask if he can get it drained again?  My mom's pulmonologist began removing fluid from my mom's lung as a simple outpatient procedure.  This was happening every few weeks and they discussed inserting a temporary drain to keep the fluid drained, but the issue eventually got resolved prior to the drain being inserted.  My mom would feel short of breath even with a small amount of fluid build up.  Everyone is different, but if your husband is struggling, I would push to get it drained again and maybe look into having a drain temporarily inserted to provide continuous relief.  

    Another big help for my mom, like Michelle said, was the wedge pillow.  My mom now has an adjustable bed and even 4 years after initial diagnosis, she still sleeps on a slight incline.  You can get them online or at your local medical store.

    Finally, I understand your fear of your husband's current struggle and the impending cancer treatment.  With my mom's most recent lung cancer battle, there was a time that I thought we would have to quit treatment completely - this was 2 months after starting chemo and immunotherapy.  My mom was hospitalized for nearly 2 weeks with pleural effusion that ended up being a complication from pneumonia and having inflection throughout her body.  It was a really tough time and I felt helpless because there was nothing I could do to help.  But with her doctor's care, medications, and her will to fight, she made it through and continued on with treatment.  So, there is HOPE - everyone on this forum is the epitome of HOPE.  Your husband has a tough journey ahead, but with the recent advances in lung cancer treatment and care, there is HOPE for him as well.

    Please know we are here for you. There will be lots of questions along the way, please feel free to use us as a resource.

    Take Care,

    Steff

  8. Joanne,

    I too am sorry to hear about your dad.  Seeing our loved one in pain and suffering is a lot to handle.  There were times during my mom's treatment that were really hard to watch because of the bad effects that were either from the cancer or treatment.  She has had several hospital stays, the longest being nearly 2 weeks - this stay was for infection throughout her body, pneumonia, and pleural effusion.  Basically, an infection that started in her trachea due to a tracheal stent wreaked havoc on her body.  I honestly thought that it was the beginning of the end and it was so hard to watch.  So, are you too worried? -I don't think so, your dad is hurting and that is worrisome. 

    I've known a couple of people who have had staph infections and they said it was very painful at times.  If your dad was doing well prior to this with the radiation and meds, the pain very well could be from the staph.  Hopefully once the staph is under control, he will feel some relief.  His recovery from this will likely delay his immunotherapy, which is okay.  My mom's initial lobectomy had to be delayed due to the medications she was taking, then her initial chemo & radiation was delayed due to a longer recovery from the lobectomy.  She spent about 1.5 years on immunotherapy and had to have a few doses delayed, or she missed them entirely, due to lung cancer complications.  It's pretty normal for things not to go as planned and that is okay.  Your dad needs to recover and be as strong as possible for his next bout of treatment.  So, please don't feel discouraged if the immunotherapy is delayed.  Basically, control is out of our hands and we just have to go with the flow and follow doctor's orders in these types of cases.  

    I am happy that your dad has you as an advocate and caregiver. No matter how strong someone is, they always need someone in their corner to cheer them on, make them their favorite meal, or be their voice when their's is lost (or in my mom's case, change her bed sheets! lol).  I wish you the best in this journey.  It's not a fun one, but there has been some very positive things come from my mom's cancer journey, including a new appreciation of life.  I hope that you can find the little things that bring hope to your life.

    Take Care,

    Steff

     

  9. Ken,

    My mom was on Keytruda for about 1.5 years.  She did not have headaches as a side effect.  I have not heard much about headaches with Keytruda either in these forums or on the Facebook forums. Be sure to bring this up with your oncologist...perhaps the immunotherapy is affecting something else in your body that needs to be addresssed.

  10. Kate,

    I am sorry you are feeling that you have no support from your family.  DFK and Curt have some really good points.  As a caregiver and very caring person, I have often found myself at a loss for words when dealing with my mom's cancer journey.  Some of it is due to being overwhelmed, other times it's from pure exhaustion.  The reality is that lots of folks don't deal with other people's pain/suffering/negative feelings/etc very well.  Perhaps your daughter-in-laws are included in this group.  But no matter how supportive or unsupportive a person is, those of us on the "outside" of lung cancer have a hard time figuring out the best way to help.  Most of us need to be told what to do and how to help.  Have you done that? Have you been specific in telling people what your needs are?  While with your family, are you acting like all is okay even though it might not be? If so, your family might be taking this cue from you and acting as if all is okay too.  Asking for help or telling your daughter-in-laws what you need from them does not mean they will be "fake" if/when they change their behavior.  Perhaps all they needed was to be told what their role is in your battle.  

    I hope you are able to get the support you want from somewhere, whether it is from your family, friends, a support group, or here.  

    Take Care,

    Steff

  11. December 2019 update:

    Hi friends, my mom had her CT scan last week and we received the results on December 12th.  The wait was very nerve wracking for me this time.  I think it was due to my uncle recently passing away from some kind of cancer - they didn't have the opportunity to find out because he was gone within 3 weeks of seeing that his liver was filled with lesions.  So that was weighing heavy on our hearts when we went in to see the doc.  But all went well, she continues to be NED.  What makes me the most happy is that my mom has decided to stop saying that she has lung cancer and now calls herself a lung cancer survivor!  When she told her sister this, I teared up, it is wonderful to hear her say this after her 2.5 year battle with this recurrence.  Her next scan will be in 6 months this time.

    My mom continues to LIVE.  Yes she has lasting side effects from treatment, yes she has had to slow down, but now more than ever she is LIVING her life to the fullest.  She gets to bring my dad home from the adult family home a few times a week so they can spend quality time together (and so he can eat decent food, he says).  During the days she is not with my dad, she has been spending time with wonderful ladies who are constantly on the go, attending hockey games and other social events.  She is also now urging my aunt to get out and have fun after my uncle's death.  And of course, she is crafting...doing all of the she loves.  She is looking forward to the future without trepidation and focuses on having FUN!  We attended a Kenny G concert in our home town, which was surprisingly phenomenal and I have bought tickets for her and I to go to the Margaritaville musical coming next month (shh, don't tell her it's her Christmas present!).  We are making lots of wonderful memories.

    Why do I share this with you? Because I want to show you that there is life after a lung cancer diagnosis, and even ongoing treatment.  Yes, my mom's life looks different now, lots has changed, not just with her health. But she continues to do the things she loves and has made new friends along the way.  For those who are feeling hopeless, I want to share that there is HOPE.  I felt hopeless too, but it all turned out okay.

    Take Care,

    Steff 

  12. I'm very sorry to hear about your mom's struggles.  There was a time I didn't think my mom would make it, she spent nearly 2 weeks in the hospital.  But she did make it and bounced back.  It sounds like your mom is a strong woman, strong women pull through these types of situations, so your mom can too.  

    Now, this is a stupid thing to say to a caregiver, but remember to do your best to keep your strength.  Your mom will probably need you when she is released from the hospital, so now may be the time to conserve your energy for when she is released.  I know it's hard to do, but try not to dwell on tomorrow or next month.  Noone of knows what will happen.  Prepare yourself for what you have control over - like keeping yourself sane and healthy so you can care for your mom when she goes home.  A hospice referral may or may not come (and fyi...my grandfather was on hospice for 3+ years with congestive heart failure) and it is out of your control.  Enjoy the time you have with your mom TODAY.  Make the memories with your mom TODAY.

    Take care,

    Steff

  13. Brian,

    Glad to hear that your treatment plan is in place.  My mom has had all of the proposed treatments included in your plan.  Chemo and radiation for 6 weeks then for a recurrence, she had chemo + immunotherapy for 6 doses and then immunotherapy alone.  The treatment came with lots of bumps, but she survived and is LIVING her life.  You can too!  It sounds like you are in good hands with your team and wish you the best.

    Take Care,

    Steff

  14. Blossomsmom,

    Second guessing yourself and kicking yourself comes with the territory whether you are the survivor or the caregiver/advocate.  Does your mom have an opinion about any of this?  While I watched my mom go through hell for over a year, she took it in stride and is ready to do it again, if necessary.  She has taken everything much better than I have.  While I was contemplating throwing in the towel, my mom kept going. How is your mom reacting to all of this?

    I hope your "meltdown" helped get some feelings out and glad you feel you can share them with us.  We get it!

    Take Care,

    Steff

  15. Melisande,

    You have some tough choices to make. A third opinion sounds like it will definitely be needed. Let me give you my perspective- a caregiver of a mother with uncontrolled Rheumatoid Arthritis and who is awaiting her 1 year scan after stopping immunotherapy (Keytruda).

    1. Lung cancer is persistent. My mom is on her 1st recurrence and it will probably not be her last. My mom initially had a lobectomy after her diagnosis of NSCLC adenocarcinoma, stage 3a. She had to have follow up chemo and radiation afterward because 1 cancerous lymphnode was unable to be removed. 1 year after treatment ended, her lung cancer was back. This time, she was given 6 rounds of chemo + Keytruda and then followed with Keytruda alone for nearly a year. She now has no evidence of active lung cancer and has been this way for a bit more than 1 year. You will likely meet survivors here who are on their 2nd, 3rd, and 4th recurrences. Some with the same diagnosis as you. So, one reason why one doc is suggesting further treatment is due to the persistence of lung cancer.

    2. My mom has autoimmune issues as well that has resulted in rheumatoid arthritis that has not been controlled by meds for several years. Her oncologist was worried about mixing RA and immunotherapy. The reality is that no one can tell you how you will react to immunotherapy. My mom was able to be on it for over 1 year. She did get pneumonitis and colitis that had to be treated with steroids. The colitis was a severe case and was the deciding factor that led to no more Keytruda. Luckily all was resolved with steroids and time. Now, my mom was not facing the concern of deafness as you are, but I wanted to give you an example of someone who was successfully treated with immunotherapy who also had autoimmune issues. 

    Finally, I am happy you found us and can share your experience and ask questions. I hope we can provide what you are looking for.

    Take care,

    Steff

  16. Liveurlife,

    I understand the shock. My mom went from Stage 1 before surgery to a 3a during surgery (they found more cancer during surgery).  It was a punch to the gut.  But with today's advancements in treatment, a late stage diagnosis does not carry the death sentence it once did a few years ago.  My mom is 4 years out of her original diagnosis.  Yes it came back, and yes she had to have more treatment, but she is out of treatment and is NED (no evidence of disease).  

    I can't venture to guess what the cause of your husband's pleural effusion was, my mom had a few bouts with pleural effusions although none were found to have cancers cells in them.  

    I totally get your anger and feeling of powerlessness.  I think we all feel it whether we are the one with cancer or the caregiver.  It's a normal part of the process of being diagnosed with a serious condition.  But as I said before, there has been great advancements in treatment which gives us all HOPE.  The good news is that your husband will benefit from these treatment advances.  It sounds like your husband will receive the current standard of care for late stage diagnoses. It was just 3 years ago when my mom was told her best bet for treating her lung cancer recurrence was Keytruda + carbo + alimta (it has just been "approved" 1 month prior to her diagnosis).  Many, many people have benefited from this treatment combo, including my mom.  She responded so well that she only had to receive 6 doses of keytruda + chemo before she went to keytruda only.  Her treatment was not a walk in the park, but she regularly says that when her lung cancer comes back, she would definitely do it all again.  I kept track of my mom's story here on the forums. You can read it  here.

    I came here looking for HOPE and I found it.  I hope you are able to do the same.  

    Take Care,

    Steff

  17. JSEIB,

    I'm sorry to hear about your severe joint pain, unfortunately it is an all too common side effect of Keytruda and other immunotherapies like it.  Inflammation is your body's way of reacting to your overactive immune system.  Often times, the inflammation is severe enough that anti-inflammatories do nothing to help.  Have you brought up this issue with your doctor? If so, do they have any other suggestions besides the typical OTC anti-inflammatories?  My concern with taking a lot of Ibuprofen and Aleve is that they can be taxing on your liver.  Immunotherapy can be taxing on the liver too, which is why you probably have regular blood draws prior to your Keytruda infusion.  There are prescription pain cremes that you can rub on joints that may give you some relief.  These would be less taxing on your liver.

    My mom was on Keytruda for about 1 year, she also has Rheumatoid Arthritis.  Joint pain is a daily event for her.  During lung cancer treatment, she chose not to continue any RA treatments.  There were days that the joint pain was very severe.  We don't know if it was RA related or Keytruda related, but she was in pain.  She was given a low dose steroid boost once or twice during her time on Keytruda.  She did not have to stop treatment and taking the steroids did not seem to affect the success of her treatment.  It helped to reset her body and her pain lessened. This might be an option for you. 

    At the time my mom was in treatment, I was taking high dose turmeric capsules for inflammation.  They helped me, so I asked her docs if it was safe for my mom to take it.  They told me that while there are no known interactions with immunotherapy and turmeric, they suggested not trying it because immunotherapy was too new to tell for sure (this was 3 years ago).  Things may have changed now, it may be worth asking your doc. 

    Another option is controversial at best and I am not advocating for it either way.  CBD is being touted as a miracle drug. I don't know that it's a miracle, but it has helped several people I know with chronic pain and inflammation.  My mom has been taking CBD tinctures for 4 months and has not had to take and OTC or Rx pain killers since taking it (she was at least taking the full dose of Aleve daily).  There are also cremes and patches.  Could this work for you? Maybe.  Could this interact with Keytruda? I don't know.  Do your docs know for sure? No.  Should you ask them before trying it? YES.  My mom asked all of her docs (her regular doc, oncologist, pulmonologist, and rheumatologist) if it was safe for her to take and would it delay getting back on treatment if/when her lung cancer returned.  They all told her to try it and that no, it would not delay future lung cancer treatments.  So, while I am not advocating for it, it may be an option for you.  But I highly suggest not trying anything before you talk with your docs.

    Finally, your only choice may end up being to deal with the pain or go off of Keytruda.  There may be no answer to the pain, which is unfortunate.  My mom had severe itching (another common side effect from immunotherapy) that drove her crazy.  Nothing helped.  She had to deal with it.  Luckily it went away after treatment stopped.

    I don't know if any of this helps and please remember I am not a doctor or any type of medical professional!  Be sure to speak with your docs before trying anything new.

    Take Care,

    Steff

  18. Vallerie,

    To answer your questions, yes. Lung cancer can be successfully treated with chemo and radiation.  While the hope would be to be able to remove the mass completely, not all masses/tumors/nodules/etc can be removed due do size, location, and overall health of the patient.  Small-cell lung cancer is a bit of a different beast than non-small cell (I am assuming that is what your mom had??).  First and foremost, your uncle will be staged with limited or advanced stage (not stages 1, 2, 3, 4).  This staging helps docs decide the best treatment option going forward.  Since his docs have already settled on a treatment plan, he has likely been staged already.  Often times treatment is more aggressive with SCLC because the beast itself is more aggressive.  

    If you haven't had the chance to check out LUNGevity's Lung Cancer 101 webpage, as Kristin suggested, I suggest you do.  It has very helpful and accurate info.

    Hope this helped a bit,

    Take Care,

    Steff

    Ohh,, and kudos for your mom for being lung cancer free for 9 years!  Fantastic news!

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