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Julie in SoCal

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  1. Like
    Julie in SoCal reacted to Judy M. in significance of abnormal cbc   
    The only thing I know is that an elevated white blood cell count usually means you have an infection. It's an indication your immune system is fighting something.
    Just M

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  2. Like
    Julie in SoCal reacted to Susan Cornett in Update: Chemo - Beamo & looking for tips   
    Julie,
    You might also check out www.chemocare.com.  It has information about side effects and mitigating those side effects based on the chemo drugs.  I've had both of the drugs you'll have but in different combinations (cisplatin/pemetrexed and carboplatin/taxol).  Good luck to you!
  3. Like
    Julie in SoCal reacted to Tylalla in Update: Chemo - Beamo & looking for tips   
    With my first diagnosis, I had chemo and radiation together. The chemo will make you tired. The radiation will add to that and make you feel wiped out. Pamper yourself, rest, relax, sleep when you need to. See if your cancer center participates in the Look Good, Feel Better event, sponsored by the American Cancer Society. This is from their site:

    In a Look Good Feel Better session, trained volunteer cosmetologists teach women with cancer how to cope with skin changes and hair loss using cosmetics and skin care products donated by the cosmetic industry. or PBA a national organization that represents hairstylists wig experts estheticians makeup artists... which includes A detailed description and demonstration of the 12 step skin care and makeup program... Detailed skin care information How to makeup tips Wig information Pointers on head coverings etc.

    You can read more about it here:
    https://www.cancer.org/treatment/support-programs-and-services/look-good-feel-better.html

    It's a nice way to spend a couple hours, learn how to feel good about yourself again, and you get some free makeup!

    My biggest advice is to just listen to your body and rest when you need to, cry if you want to, and never lose your faith.

    Blessings,
    Michelle

    Sent from my SAMSUNG-SM-G890A using Tapatalk


  4. Like
    Julie in SoCal reacted to Tom Galli in Advanced NSCLC: What to expect when treatments fail   
    Christine,
    Honest, straightforward and blunt, that's me!
    Normally folks when exhausting curative treatment choose hospice care coupled with palliative treatment to eliminate pain. That is what I will do should my cancer recur and prove unmanageable. 
    The objective of hospice care is to allow one to spend quality time with friends and family while avoiding pain and discomfort. Side effects are minimal to non existent. Hospice also assists family members in coping with the situation. 
    We all die. I don't want to pass connected to tubes and suffering wretched side effects from curative treatments with little probability of success. I'd ask your mom's oncologist to recommend a good in-home hospice care provider. 
    Stay the course. 
    Tom
  5. Like
    Julie in SoCal reacted to Tom Galli in Update: Chemo - Beamo & looking for tips   
    Julie,
    Sorry I can't link but read my "Ten Steps to Survive Lung Cancer" in the blog section of the forum. It is on page two of the Stay The Course blogs.  It has all my best suggestions for chemo prep and side effect management. 
    Stay the course. 
    Tom
  6. Like
    Julie in SoCal reacted to Tom Galli in Looking for Data   
    Julie,
    I'm iPhone teatherrd and can't link treatment specific information. Have you consulted Lungevity.org and the Lung Cancer 101 information. There is very good introductory information on targeted therapy and immunotherapy that should allow you to start your read in. 
    After you digest this information, there is a clinical trial portion of the site that gives a good summary of current and emerging trials and results. 
    Hope this helps. 
    Stay the course. 
    Tom
  7. Like
    Julie in SoCal reacted to LaurenH in New here -- Hi there!   
    Hi, Julie,
    I'm glad to hear your surgery went well! I'm happy you're recovering at home. Please continue to post updates when you can and know that we're thinking of you!
    With gratitude,
    Lauren
    --
    Digital Community Manager
    LUNGevity Foundation
  8. Like
    Julie in SoCal reacted to Tom Galli in New here -- Hi there!   
    Julie, 
    I forgot to inform you of every lung surgery patient's favorite device, the spirometer. That and the extreme coaching I received are now well remembered. 
    Make that ball dance. 
    Stay the course. 
    Tom
  9. Like
    Julie in SoCal got a reaction from Tom Galli in New here -- Hi there!   
    Hey Katie, thanks for your post!
    I'm doing well.  I just got home yesterday afternoon from the hospital.  It's tiring to be at home with the kids and chaos, but I wouldn't have it any other way.  Nurses bringing you everything you need is wonderful, just not reality.
    My VATs Lobectomy went well.  No problems or complications and the doc said that the lobe and lymph nodes looked good. Of course I'm still waiting for the path report to know for sure.  I should find out sometime next week.  So I'm just hanging in there - using my friend the incentive spirometer, coughing, and taking walks.
    Thanks again!
    Julie
  10. Like
    Julie in SoCal got a reaction from BridgetO in Two active cancers?   
    Hi Cindy,
    Thanks for your suggestion. Yes, I've had a biopsy (many, in fact) and the diagnosis is:  primary adenocarcinoma of the lungs, and primary malignant melanoma in lymph nodes.
    Originally we thought the lung funk "Larry" was melanoma.  It made sense. I have melanoma and melanoma likes lungs.  But when it didn't respond to any melanoma treatment (while other tumors were) we biopsied it and found out that it is adenocarcinoma of the lung. Larry the lung tumors eviction is in a week.
    Julie
     
  11. Like
    Julie in SoCal got a reaction from Mally in Two active cancers?   
    Hi Cindy,
    Thanks for your suggestion. Yes, I've had a biopsy (many, in fact) and the diagnosis is:  primary adenocarcinoma of the lungs, and primary malignant melanoma in lymph nodes.
    Originally we thought the lung funk "Larry" was melanoma.  It made sense. I have melanoma and melanoma likes lungs.  But when it didn't respond to any melanoma treatment (while other tumors were) we biopsied it and found out that it is adenocarcinoma of the lung. Larry the lung tumors eviction is in a week.
    Julie
     
  12. Like
    Julie in SoCal got a reaction from Judy M. in Two active cancers?   
    Hi Cindy,
    Thanks for your suggestion. Yes, I've had a biopsy (many, in fact) and the diagnosis is:  primary adenocarcinoma of the lungs, and primary malignant melanoma in lymph nodes.
    Originally we thought the lung funk "Larry" was melanoma.  It made sense. I have melanoma and melanoma likes lungs.  But when it didn't respond to any melanoma treatment (while other tumors were) we biopsied it and found out that it is adenocarcinoma of the lung. Larry the lung tumors eviction is in a week.
    Julie
     
  13. Like
    Julie in SoCal got a reaction from Susan Cornett in Two active cancers?   
    Hi Cindy,
    Thanks for your suggestion. Yes, I've had a biopsy (many, in fact) and the diagnosis is:  primary adenocarcinoma of the lungs, and primary malignant melanoma in lymph nodes.
    Originally we thought the lung funk "Larry" was melanoma.  It made sense. I have melanoma and melanoma likes lungs.  But when it didn't respond to any melanoma treatment (while other tumors were) we biopsied it and found out that it is adenocarcinoma of the lung. Larry the lung tumors eviction is in a week.
    Julie
     
  14. Like
    Julie in SoCal got a reaction from Tom Galli in Two active cancers?   
    Hi Cindy,
    Thanks for your suggestion. Yes, I've had a biopsy (many, in fact) and the diagnosis is:  primary adenocarcinoma of the lungs, and primary malignant melanoma in lymph nodes.
    Originally we thought the lung funk "Larry" was melanoma.  It made sense. I have melanoma and melanoma likes lungs.  But when it didn't respond to any melanoma treatment (while other tumors were) we biopsied it and found out that it is adenocarcinoma of the lung. Larry the lung tumors eviction is in a week.
    Julie
     
  15. Like
    Julie in SoCal reacted to Tom Galli in Two active cancers?   
    Julie,
    I can't give you first hand knowledge because my two cancers were the same type - Squamous cell skin, treated surgically, and Squamous lung, treated with concurrent radiation and chem, then surgery, then chemo (twice) and finally SBRT. 
    So I don't have a clue. We have folks on the Lungevity Facebook page that have experienced concurrent treatment of two different types. Search Lungevity on Facebook to link up. 
    Stay the course. 
    Tom 
  16. Like
    Julie in SoCal reacted to Susan Cornett in Two active cancers?   
    Good morning, Julie. I had lung and thyroid cancer; thyroid cancer was found when doc was looking for lung mets. Because there had been no spread of the thyroid cancer, I had a thyroidectomy and that was the extent of my treatment. I wish you the best.
  17. Like
    Julie in SoCal reacted to DanInMN in 5 years after colorectal cancer....lung nodule   
    Thanks Tom.  I've been a reasonably active member in a colorectal cancer forum.  I'm talking there about treatments and such (as much as one can when one has very little information).  I may poke around here for information about lobectomies, etc, if it comes to that.  Thanks for the support!  I genuinely appreciate the welcome and knowledge I've received here.
  18. Like
    Julie in SoCal reacted to Susan Cornett in Chemo with costumes!   
    I think we can all agree that chemo stinks.  I had four rounds of cisplatin/pemexetred last year and I'm 3 weeks into 6 weeks of carboplatin/taxol for a recurrence.  Last year, my girlfriends and I decided to have themes for chemo. One session was 80s and the last session was Mardi Gras.  We had beads and boas for everyone.  We're doing the same thing again this year.  We had spring fling, beach fun, and today's pajama party.  For some reason, my husband wants no part of the costume concept!  
    I'm sharing this in the hopes that it will inspire you to find a way to get through chemo with a smile.  If we don't laugh, we cry.  


  19. Like
    Julie in SoCal got a reaction from Mally in Port Question   
    Hi Judy,
    I have a port (from a former cancer life) and I love it.  It's really easy and just about pain free.  It's on my right side with no problems. I have both blood draws and infusions done through it.
    I've also had a PICC line.  This I did not like.  it's a pain as the tubes are stitched to your skin and any pull or tug or whatever and it pulls on the stitches.  Also as I understand it, a PICC line really isn't made for long term use either.  Oh and showering is a pain with a PICC line as you can't get it wet. 
    This was my experience. But with all of this said, do what is comfortable for you!  
    Shalom,
    Julie
  20. Like
    Julie in SoCal reacted to Meloni in Port Question   
    I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3
    P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients. 
  21. Like
    Julie in SoCal reacted to Juanita the CrossFit Diva in The CrossFit Diva here :)   
    Hello everyone I finally created an account lol. I'm a 2 1/2 year lung cancer survivor and THERE IS HOPE!!! I've been a part of LUNGevity since my lung cancer journey began and it's a great organization.
     
    I was diagnosed November 20, 2014 with stage 3B NSCLC adenocarcinoma ALK +, I stood positive, held on to the word of God and fought a brave fight and won!! It wasn't easy but it is POSSIBLE through the word of God! I was on Dr. Phil and shared my story, I've traveled and shared my story, I'm a lung cancer advocate and now I'm an owner of my very own crossfit gym. So remember my lung cancer brothers and sisters there is HOPE!!
     
    DON'T EVER GIVE UP!! No matter what they tell you!!
     
    Sent from my SAMSUNG-SM-G935A using Tapatalk
     
     
  22. Like
    Julie in SoCal got a reaction from Judy M. in Port Question   
    Hi Judy,
    I have a port (from a former cancer life) and I love it.  It's really easy and just about pain free.  It's on my right side with no problems. I have both blood draws and infusions done through it.
    I've also had a PICC line.  This I did not like.  it's a pain as the tubes are stitched to your skin and any pull or tug or whatever and it pulls on the stitches.  Also as I understand it, a PICC line really isn't made for long term use either.  Oh and showering is a pain with a PICC line as you can't get it wet. 
    This was my experience. But with all of this said, do what is comfortable for you!  
    Shalom,
    Julie
  23. Like
    Julie in SoCal reacted to Judy M. in Port Question   
    Have sent the info. to the surgeon who'll be placing my port and will probably also ask my Radiation Oncologist what he thinks. Thank you, Tom.

    Sent from my SAMSUNG-SGH-I337 using Tapatalk


  24. Like
    Julie in SoCal reacted to Judy M. in Port Question   
    Thank you so much, Julie. I really appreciate you sharing your experience with me. Especially since you've had both.
    Peace,
    Judy M

    Sent from my SAMSUNG-SGH-I337 using Tapatalk


  25. Like
    Julie in SoCal reacted to Tom Galli in Brand New   
    Jeff,
    You are no longer alone. You have us. Your fear might be dialed back by knowing I faced the same procedure you will and have survived 13 years. If I can live, so can you. 
    Stay the course. 
    Tom
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