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Steff

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Posts posted by Steff


  1. 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


  2. 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


  3. 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


  4. Thinking of you Bridget. 

    We will be in the waiting game next week...CT on Monday and she gets results on Thursday. I'm really nervous about this scan for some reason, but mom is cool as a cucumber, as usual!

    Sending positive scan vibes you way! Hugs to you my friend!


  5. 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


  6. 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


  7. 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!


  8. Hi Lisa,

    I too, am a caregiver.  I understand your struggles needing to care for your parents and having a family of your own to care for too.  Caregiving is not for the faint of heart and is exhausting.  There is no magic wand to make it easier and no advice anyone can give that will take away our burden.  We just get up every day and do the best we can with what we are given.  Please know that there are others who completely understand what you are going through.  From the sounds of it, your dad is a fighter, although exhausted from fighting.  My mom was in ICU for 2 weeks due to severe pneumonia.  She was basically full of infection and really struggled, including being intubated for 24 hours.  But she pulled through.  It was a tough go, but she came out the other side.  Your dad has the support of you and your mom, along with medical staff.  He can pull through too.  You are looking for stories of hope, I came here too looking for hope - everyone on this site is an example of HOPE and a success story.  Your dad is alive, so there is HOPE.  

    Take Care,

    Steff

     


  9. Hi Fishon (I like your screen name),

    I understand your shock and some confusion after finding that your wife's lung cancer has possibly spread.  I was in a similar situation with my mom a few years ago.  Her lung cancer is different (non-small cell), but I too was in shock when, 1 year after surgery and the end of her follow-up treatment, her lung cancer was back.  Recurrences are all too common in lung cancer - that's the bad news.  But the good news is that regular, follow-up screening most often catches the recurrence early enough to treat it.   Your analogy of "chasing around lung cancer" is a great way to describe treatment for what is now considered, for many, a chronic condition rather than a death sentence.  With advancements in lung cancer treatment, doctor's can throw many different things at the cancer in the hopes to eradicate it or slow it down.

    You mentioned immunotherapy.  Yes, some SCLC patients benefit from immunotherapy.  When it is prescribed and why, I am not sure.  But research is showing that some kinds of immunotherapy help slow SCLC and/or eradicate it.  My mom was on immunotherapy for nearly 1 year for her recurrence (again, she has NSCLC) and she is nearing her 2 year mark of NED (I don't want to jinx it, her next scan results are on December 12th).  I am a big supporter of immunotherapy when it is appropriate.  If I were you, I would definitely bring it up and ask your wife's docs if it is an option.  Your wife's treatment options may not be simple or obvious as her initial option of surgery, so don't forget that you can always look for a second opinion if you are concerned about the options given to her.

    Hope this helps a bit.

    Take Care,

    Steff


  10. Hi Niess,

    I am happy to hear that you are getting a "much needed boost" from our responses to you.  These forums provide the same boost for me, as a caregiver.  I see many of the same frustrations and concerns that you have, with my mom.  Although there is a significant age difference, the two of you are similar in several ways, especially when it comes to getting pissed off about side effects from treatment.  And although my mom's treatment journey is different and her side effects are different, the frustration is the same.  Her biggest issue is getting out of breath with any type of exertion - even just walking to the bathroom.  She has always walked quickly and has always been a go-getter.  That has had to change and she hates it.  She hates having to slow down and hates how cleaning the house or mowing the lawn takes her 2 days instead of 2 hours.  And like you say, it is better than the alternative, but it still sucks.  

    I am sorry you are having to endure these side effects and sorry you have the added stress of keeping a job to keep your family afloat.  My mom was lucky in that she didn't have to worry about working (she was retired) or mounting medical bills (she has yet to see a bill from 4 years of cancer treatment - good insurances are a life saver).  She just had to care for herself and my dad (he is disabled).  We didn't think about the struggles of young people having to deal with work, kids, and mounting medical bills until we got to know the lung cancer population more.  That added stress is enough to drive someone crazy.  But here you are, LIVING your life despite lung cancer and the side effects that follow.  I am happy you are here with us and hope that you continue to get what you need from this group.

    Take Care,

    Steff

    P.S. - I know you said you didn't want any female driver jokes, but how about blonde driver jokes?? I only bring this up because my first car had a license plate frame that said: Caution, blonde behind the wheel (I was bleach blonde for most of my teens and early 20's).  


  11. Robert,

    I wanted to share my mom's experience with Chemo since she had a bit different side effect than others.  Luckily my mom never vomited (she cannot think of anything worse in life than vomiting), but she had severe acid reflux, which caused her to feel nauseous.  It took a bit for docs to find out the proper cocktail of meds that would ease the reflux, but once they did, she felt much better.  As everyone else has said, there are meds available for nauseousness, urge your wife to use them if she needs them.  If nauseousness persists, tell her docs so they can get something that works for her.  It is such a common side effect that they likely have something that will help, they just have to find it. And don't rule out acid reflux as a possible cause.

    I tried to prepare my mom's pantry with foods she loved and thought she would want to eat during her treatment.  This was very unsuccessful because her tastes changed with every round of chemo.  Things she loved tasted horrible to her.  Your best option might be to wait and see what sounds good to her and go from there.  One thing that my mom did drink a lot of were Instant Breakfasts and Kern's juice.  Both were suggested by my mom's oncology nutritionist.  Neither are overly healthy, but it provided the calories that my mom needed to stay relatively healthy.  

    Take Care,

    Steff


  12. Hey Fletch,

    I am sorry your initial post didn't get the responses you were hoping for, I have been a bit out of the loop and am seeing your post for the first time.  I am a caregiver for my mom as well.  Well, I am more like an advocate that makes sure my mom is doing her best to take care of herself.  From a caregiver's perspective, I don't think your rant is cold-hearted or uncaring. I understand 100% what you are going through.  My mom is on her 1st lung cancer recurrence. I was crushed when she was diagnosed with it.  I literally went to work and came home and cried and screamed.  I am thankful my husband was working nights at the time, otherwise he would have had me committed.  Again, I completely understand you and your brother's fear and heartbreak.

    Here's some food for thought: People are different in how they deal with a life threatening illness.  Your mom is obviously responding in a way that you don't agree with.  That isn't easy. My suggestion is to make sure she understands her disease and that if the lung cancer is left unchecked, she will likely die from it.  The main LUNGevity website has great, easy to read information about all things lung cancer.  There are also great checklists to use during doctor's appointments.  Once you know that she absolutely understands what she is battling, ask her what she wants out of this battle.  Does she want to deal with any type of treatment, even if the side effects are mild? If she does not want any treatment, ask her why - this can help you to understand her underlying reasons for her decision.  And at the end of the day, it is ultimately her decision.  If she is open to some type of treatment with little side effects, you can have this discussion with her docs.  If she is not opening up to you, you can let her docs know of your concern and perhaps they can help with the conversation.  But no matter what she understands, her answer may still be "no treatment".

    I'm sorry you are having to navigate these waters with you mom.  It's really hard when the child has to step up and act like a parent to their parent.  I've been doing that for 4 years now and it's exhausting.  But as a caregiver, we just keep moving forward, there's no other choice.

    Please know that these forums are a safe place to vent and there is no judgement here.  It's also a great place to get information.  LUNGevity also offers a Lifeline Partner program.  This program can pair you and/or your mom with a peer who understands what you are each going through.  Perhaps it would be helpful for your mom to hear from others who have been in her same situation.  You can look more into the program on LUNGevity's main web page.

    Please feel free to reach out anytime..we are here for YOU.

    Take Care, 

    Steff


  13. Hi Marie,

    Although I have not been a patient, I tend to agree with Tom.  My mom is on her 1st lung cancer recurrence after a lobectomy and follow-up chemo and radiation.  She was given the option of immunotherapy alone or immunotherapy and chemo combined.  The latter increased survival rates by 5-10%, for a total of about 50% survival rate.  My mom chose the latter and has been NED for over 1 year.  Your husband is looking at a combined 75% probability of survival, that is HUGE and sounds very hopeful!

    I am sorry you guys are in the position to have to make these choices, but it will get easier.  

    Take Care,

    Steff

     


  14. My favorite costume was last year's costumes...I was a crazy cat lady (I really didn't have to dress up much!) and my husband was a spice rack (a bra with jars of spices in it) - he was a hit at the party!

    My favorite halloween candy was the full-sized 3 Musketeers bar that my grandma and grandpa would have for us grandkids.  I don't even like 3 Musketeers, it was just the idea that my grandparents went to the trouble to get us all something special and the memories of it.

     

     


  15. GiGi,

    My mom's experience was similar to Curt's - no intubation tube down her throat.  I believe she had a catheter when she woke up but it was removed pretty quickly as they want you up and walking asap.  She also had the drain tube, she's had one a couple of times actually.  Although she said it was uncomfortable, it did not cause enough pain to warrant additional pain meds.  Some people go home with the tube, others stay until the tube can come out.  My mom was in the hospital for about a week and the tube was removed prior to her leaving.

    The reality is that you are not in control of what the docs need to do to keep you thriving through this procedure.  The anticipation and anxiety are often worse prior to the procedure than dealing with the actual procedure.  Curt gave you some great aftercare advice - it's something most patients need and have to do.

    Take Care,

    Steff

     

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