coco1101's Journey:

Survivor: Lung Cancer > Non-Small Cell > Adenocarcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 29 years ago, Female, Age: 63, Stage IV, EGFR mutation positive: No

  1. 1
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    over 4 years ago
    coco1101's Avatar

    Cancer is back/Recurred

    Oh No

    Originally I had Breast Cancer (1988) – treated with Lumpectomy and 3 months of radiation. 4 years later (1992) I developed Lung Cancer - --- Bronchoalveolar; had major surgery removed large wedge sections from top, middle, lower right Lung. Malignant top lobe and middle lobe were both cut out with wedge resection. Lowest lobe also underwent wedge resection and was benign. Had Lung Cancer recurrences in 1999 and in 2007 by which time it had mutated to Adenocarcinoma (both treated with "fillet of fish" surgery - ouch! How could anyone have 3 of these, I don't know). In 1999 I contracted a Staph Infection inside, which caused my back to 'blow out' all the fluid accumulation, split the stapes open, etc. I had a 102 degree fever. No fun. Visited the Surgeon who wanted my husband to handle the cleaning, etc. No way, he looked at the hole in my back and said "oh no, I can't do that". Every day for 3 months I had RN's visiting daily to remove necrotic tissue, sterilize the hole, pack it with sterile gauze and tape it up. I can't begin to tell anyone what this felt like. I took two 10 mg Hydrocodone before they arrived and 2 as they left. The infection had to heal from the inside out, no fun whatsoever. 2010 Breast Cancer reoccurred; treated via a bi-lateral mastectomy and reconstruction which included multiple (7) additional surgeries in the following 7 weeks due to infections and a never ending list of complications. This episode was followed by a Staph Infection and 8 weeks of daily infusions; first in my veins, till they all collapsed or blew out then through a PICC Line. In late 2011 I was diagnosed again with Lung Cancer - Adenocarcinoma -- treated with Stereotactic Body Radiosurgery, 5 rounds in Jan 2012. In late 2011 I was also diagnosed with Thyroid Cancer; underwent a Thyroidectomy in December, 2011, Radioactive Iodine treatment in April, 2012. In July 2012 I was again diagnosed with Thyroid Cancer; located in a Lymph Node that was just behind what had been my Thyroid - per all the Doc's this was most likely the original site of the Thyroid Cancer; which metastasized into the Thyroid. Surgery to remove this Lymph Node + others nearby - this reoccurrence & surgery was in July, 2012. As of July, 2013, I'm doing well...so far so good;-))) In Feb or Mar of 2013 I had to have an EBUS procedure for the doctor's to obtain a biopsy of nodules or lymph nodes in my upper left lobe - in a very precarious location. It turned out to be benign but need close monitoring. In June, 2014 I had another PET and it lighted up in my upper left lobe. Once again in July 2014, I had another EBUS procedure to obtain a sample for biopsy of the nodules/tumor. This time it was malignant. I started Chemo and Rad's in August. Had 2 rounds of Cisplatin and Etoposide along with 7-8 weeks of Radiation. Not exactly a walk in the park, as you all know. When I found out in Nov. 2014 that the Chemo and Rad's did not work I was terribly saddened. The thought of anyone going through such treatment to find it it didn't work was incomprehensible. All of the 27 years I've been treated, I always knew what the next step would be, my next therapy, etc. Now, nothing. Even worse, although bombarding my tumor with all this radiation and chemotherapy not only didn't reduce the tumor, in fact the tumor had grown. With a tremendous effort - we reviewed options; my Onc said "I doubt any additional Chemo will work, and my Rad's Onc said "you can't have any more radiation treatment, that's all your body can withstand. I went to see their new esteemed Thoracic Surgeon who studied all the test results and turned me down for treatment. I want back to my Onc and said "well what do I do, sit here and wait to die"? We decided a referral to another facility - an NCI designated Cancer Center might have a Clinical Trial I could enter or perhaps more treatments. So, off I go to the new place, new doc's... daunting experience after being treated in one place for 27 years. I have now met with my new Onc and his team - of many - and undergo another 30,000,000 tests and procedures, CT-guided percutaneous fine-needle aspiration biopsy - yup, they re-confirmed it, I have Lung Cancer for the 5th time, duh, I could have told them that! Visited the head of Thoracic surgery, who also turned me down to remove my top left lobe. Onto their Rad's Onc who said it is a very difficult situation and I'll meet with our top Doc who helped develop SBRT and get back to you... That was yet another "no". So now we are back with Med. Onc and talking about "things that will open up any day", a specialized Clinical Trial for KRAS patients - Oh, did I fail to mention I have a terrible mutation - KRAS? Doctors all over the world have been trying to 'crack the KRAS nut for over 20 years', no success yet. Until then, I might be eligible for a Phase I Clinical Trial of a new drug from Norway. I have a little issue though so it remains to be seen if I can get in this trial or not. While we wait - now this tumor is hanging out for a year since declaration of it being malignant - if I can't get into the trial, they suggest a 'easy' Chemo which will stave off continued growth, the drug, Alimta. No hair loss, not too sick, 15 minutes every 3 weeks. I wish I had some better answers, but this is all I've got, for now. I'm forever a serious believer in the Power of Positive Thinking, and live life with my glass half-full. Something will turn up. I'm praying for me, and all you other LC patients out there, please if you can find it in your heart, say a prayer for me, OK?

    0 Comments
  2. 2
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    almost 4 years ago
    coco1101's Avatar

    Segmentectomy or wedge resection

    Procedure or Surgery

    Nothing I would wish on anyone! One of our Doc's tells me "be happy, no complaining - at least you can have surgery". So I shut up, except I had LC 5x already and feel able to discuss my outcome! Also have had Breast Cancer twice and Thyroid Cancer twice... Still a happy optimist hoping and wishing and praying for the best possible outcome!

    Went as Expected: Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  3. 3
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    over 4 years ago
    coco1101's Avatar

    Segmentectomy or wedge resection

    Procedure or Surgery

    Multiple surgeries; multiple infections and Staph infection twice. Surgery has saved my life and also made it more challenging with only 1/3 of my lungs left.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 1 year ago
    coco1101's Avatar

    Segmentectomy or wedge resection

    Procedure or Surgery

    3rd operation to remove Lung Cancer, it only gets harder as one matures. This one took 6 months to recover, but it was 15 years after the 1st one.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  5. 5
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 2 years ago
    coco1101's Avatar

    External radiation (Stereotactic)

    Radiation

    Nothing I would wish on anyone else. I had typical radiation for breast cancer 25 years ago. In 2012 I had Stereotactic Body Radiosurgery, 5 shots over 3 weeks. Two years ago, 2014 I had traditional radiation for lung cancer along with chemo.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    2 Comments
  6. 6
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 1 year ago
    coco1101's Avatar

    External radiation (Stereotactic)

    Radiation

    This person has yet to add any details about this experience.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  7. 7
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 1 year ago
    coco1101's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Went on Opdivo Immunotherapy for 4.5 months but it didn't work for me/my Lung Cancer

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  8. 8
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 2 years ago
    coco1101's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Tough treatment, taken 6 days of Chemo then several weeks with just Radiation treatments, the back to another round of chemo.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  9. 9
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 2 years ago
    coco1101's Avatar

    Eating problems (anorexia)

    Side Effects

    Couldn't eat any food for several week long periods... really messed up my body though.

    0 Comments
  10. 10
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 1 year ago
    coco1101's Avatar

    For a drug called Bavituximaeb

    Clinical Trial

    I was on a placebo, trial was including a Chemo drug, Taxotere and I am no longer on the Trial,but still on Taxotere which is showing good results.

    2 Comments
  11. 11
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 2 years ago
    coco1101's Avatar

    Fatigue (tiredness)

    Side Effects

    Boy, that Chemo (Cisplatin and Etoposide) really kicks your butt... coupled with daily Rads for 8 weeks and it's a double whammy!

    0 Comments
  12. 12
    • coco1101
    • Experience with Adenocarcinoma, Lung ...
    about 2 years ago
    coco1101's Avatar

    Where my future treatments will be?

    Decision Point

    I've had Cancer for 27 years on and off and have been at one hospital for treatment all this time. I've had the same Onc for 23 years... But my situation has evolved and I am sad to say they really didn't have any treatment for my current LC. So we had to make a decision to move to a new hospital in our same city... but it was a tough situation. I am now with some Onc's who are working on a plan of treatment to be finalized once I undergo a few dozen "more" tests! We are on the right track now, though, I'm sure!

    1 Comment