Jump to content

Mally

Members
  • Content Count

    273
  • Joined

  • Last visited

  • Days Won

    5

Reputation Activity

  1. Like
    Mally got a reaction from Rower Michelle in Scanziety Season.   
    I am so happy for you Tom to get the great results of NED ...I've got a week and a half to get scans and results so I'm hoping to join the ned club too ..
  2. Like
    Mally got a reaction from Tom Galli in Scanziety Season.   
    I am so happy for you Tom to get the great results of NED ...I've got a week and a half to get scans and results so I'm hoping to join the ned club too ..
  3. Like
    Mally reacted to Tom Galli in Scanziety Season.   
    I had a pleasant reunion with my CT technician Chris who's been scanning me for nearly 16 years. He displays family photos in the scan room and I realize I've watched his children grow up. Chris knows I'm a "hard stick" so he passes me off to the oncology nurses to rig the IV for scan contrast. I was mildly sedated with valium on board, and the nurse was both lucky and good for the rig was installed after the first stick. I also had a surprise blood test which I hope applies to my oncology consult on September 16th.  This scan was a bit unusual covering neck, chest and pelvis. My doctor is exercising lots of caution and I'm happy with that. So, six days of scanziety countdown to results revealed. I'm flooded with memories of the many recurrences I've had but...
    I'll stay the course.  
    Tom

  4. Like
    Mally reacted to Tom Galli in Small Cell, curable? Stage IV?   
    Kelly,
    Use of the word "curable" as an outcome for any form of lung cancer is hard to fathom. About 10 years ago, my oncologist introduced me to the term no evidence of disease (NED) and said that was the outcome the oncology community was aiming for.
    From your post, I glean your mom is diagnosed with extensive-stage small cell lung cancer with a primary in the lung and two mets. Any stage of small cell lung cancer is difficult to manage or treat. Often small cell responds positively to chemotherapy but quickly develops resistance to drugs and spreads rapidly. I've read about clinical trials of combining conventional chemotherapy with immunotherapy and these are showing promising results. While she completes here current therapy, you might want to investigate your mother's eligibility for an immunotherapy clinical trail. Here is a resource you might use. I'd also ask her treatment team about trial eligibility. 
    Here is a member's experience of treating small cell with combination chemotherapy (Carboplatin & Etoposide, and the immunotherapy drug Tecentriq) after a recurrence after successful first-line treatment. And, note the emerging immunotherapy treatment options after recurrence for small cell lung cancer here. Note the FDA has approved three immunotherapy drugs for treatment of extensive-stage small cell lung cancer (read Treatment Options for small cell lung cancer and scroll all the way down to see the Immunotherapy section).
    So, while I wouldn't use the word curable, I would use the words no evidence of disease. Immunotherapy is having a huge impact on both non small cell and small cell cancer treatment. So there may be two paths forward for your mom, even with extensive stage: a clinical trial or second line treatment with immunotherapy. There might even be a third to combine with the aforementioned: stereotactic radiation (SBRT) of the spine and bladder mets.
    Welcome here.
    Stay the course.
    Tom
  5. Like
    Mally got a reaction from Tom Galli in Mally   
    Tom you were right that my sore throat didnt last too long only about 2 and a half weeks which I'm really pleased with so thanks for the confidence you give ..
  6. Sad
    Mally reacted to janicew in Just numb !!!!!   
    Hello all,
    I am new here and this is my first post. Last week I had a CT done and was told they discovered a 1 cm. nodule in my upper left lung but the lymph nodes look good.  According to the family doctor and the radiologist it is suggestive of lung cancer. Immediately I was scheduled an appointment with a thoracic surgeon on Sept. 10 th and I have read peoples experiences with him and he is supposed to be wonderful. I don't even have words to explain how scared I am, I can't get out of my head that I am going to die from this. I am only 53 and I can't be heading down that road or can I ? I don't know if I should be terrified or hopeful or what ? I have cried for days and feel as though this is the end for me. I know that sounds crazy but I just don't know how to feel or think. I could really use some help from all of you in helping me get my head wrapped around this and how I should approach this. I'm sorry if this isn't the most positive post all I can say is I am terrified. Any and all responses would be greatly appreciated, thank you in advance.
  7. Like
    Mally got a reaction from Tom Galli in Port?   
    Hi Lin I'm having immunotherepy and I have to say getting a port was the best thing I did because I had chemo months before starting the opdivo and I had a vein close to rupture and it was getting difficult finding a vein and I have my blood tests done from my port as well so I would highly recommend it but not so much a pic line because you have to keep that dry I believe whereas the port is under the skin 
  8. Like
    Mally reacted to Tom Galli in Accidentally discovered 17 x 10 nodule   
    Troy,
    Diagnostic timing is variable.  If one has metastatic disease and is under treatment, a common interval is a scan midway through treatment, then if no evidence of disease, a rescan after 6 months. 
    When small suspicious nodules are discovered, a common interval is a rescan after six months. Most often performed is a CT scan, not a PET. I don't have any concrete data to back up this timing, just recollection of reading a lot of posts on this forum. So, I think a 6 month re-scan is prudent.
    How fast do tumors grow? Here is an interesting article by an oncologist that gives some insight.
    Stay the course.
    Tom
  9. Like
    Mally reacted to Curt in Accidentally discovered 17 x 10 nodule   
    My follow ups after my negative PET were CT Scans every six months.
  10. Like
    Mally reacted to Rower Michelle in Mally   
    Hi Mally,
    These days all roads lead to Facebook. You might search for an Optivo group.  Otherwise there’s a group here in the US GO2Foundation.com or the Lungevity Helpline that might lend some insight. They might not be familiar with the protocols down under however it’s a least a reference point. You might also Google the NCCN Guidelines  
    Keep is posted! 
    Michelle
  11. Like
    Mally reacted to Tom Galli in Mally   
    Mally,
    Great news on completing radiation. I think your throat discomfort should leave soon. Just think of the discomfort to the cancer cells caused by the radiation frying them!
    I wouldn't know the optimal Opdivo treatment interval.
    Stay the course.
    Tom
  12. Like
    Mally reacted to BridgetO in Port?   
    I'm glad to hear that the port is a big hit!
  13. Like
    Mally reacted to Lin wilki in Port?   
    So after reading everyone’s comments about the port, I got one. My first infusion yesterday was a piece of cake!  Anything to make this unbearable disease treatment easier is worth it
  14. Like
    Mally reacted to JLA in Stage IIIA Lung Cancer   
    I had the same diagnosis, IIIA/B because I had it in my lymph nodes also, at the same age, but I was a smoker and around chemicals. 
    I had the upper right lobe removed and lead a pretty normal life and the only time I notice it is climbing stairs at the football game in the high altitude, partly because of the missing lobe and mostly because I'm out of shape. 
    This is beatable, there's plenty of us here that can attest to that. 
     
  15. Like
    Mally reacted to Tom Galli in How to starve cancer   
    Mally,
    Yes, my wife has bachelors and masters degrees in dietetics but fortunately, I was always a small, lean guy and had no problem eating whatever I pleased until I started chemo.
    My first series of infusions was adjuvant therapy in combination with conventional radiation. I received Taxol and Carboplatin once a week for six weeks. I had few side effects during this course of treatment except the drugs really affected my appetite.  So I was losing weight and didn't feel like eating.  Since I was having daily radiation that kills a lot of cells in addition to tumor cells, my lack of appetite was of real concern to both my oncologist and wife.  Martha found some journal articles that suggested a mint flavor would stimulate appetite in some being treated with Taxol and Carboplatin and she purchased some chocolate mint chip ice cream. Surprisingly, that tasted really good and I when through a whole half gallon in a day.  Martha then started making ice cream with mint flavoring. Her aim was to ensure I had the maximum calories possible each day. The best recipe was chocolate mint ice cream with crushed Oreo mint cookies. She was churning about 1/2 a gallon every day and I was eating so my calorie problem was solved.
    I started treatment at about 138 pounds and lost 15 during the first week.  The ice cream allowed me to gain back the 15 pounds and maintain my weight through treatment.  That was a good thing because my oncologist was going to stop my chemo if I didn't recover my weight.
    So my "health" eating plan was one 1/2 gallon of chocolate mint ice cream with crushed Oreo mint cookies each day and cranberry juice.
    Stay the course.
    Tom
  16. Like
    Mally reacted to Rower Michelle in How to starve cancer   
    Hi Mally
    I’m wondering the same thing.  I just bought the How to Starve Cancer book as well.  
    I had to give up meat and dairy on my targeted therapy, since then some of the side effects have really diminished. Inflammation is the enemy in my opinion!!
    My new Integrative Medicine doctor says the cancer diet should run along this line:  “no feet is better than two feet is better than four feet”. 
    I’m super curious about the potential combination therapies using older drugs long forgotten due to patent expiration.  
    Claudia any news on your end?  I just might buy a copy of the book for the onc just to get his reaction.  
  17. Like
    Mally reacted to Tom Galli in Stage IIIA Lung Cancer   
    Denise,
    Welcome here.
    Here are some lessons learned from a 15-year survivor of non small cell, squamous cell, lung cancer diagnosed at Stage IIIB.  I had my right lung removed, and I've lived a near normal life since. My bottom line: if I can live, so can your husband.
    While there is no "cure" for lung cancer, surgery is the best path to NED and given the size of your husband's tumor and early discovery, you've got a wide path.  But since lung cancer is so persistent, my questions would center around the plan to deal with a recurrence.  Michelle's information about driver mutations and their discovery is an important discussion with your husband's oncologist. This is essential: ensure his tumor biopsy is sent for detailed laboratory testing to discover mutations and immunotherapy indicators. Moreover, after surgery at Stage III, it is common to have a course of adjuvant chemotherapy to sweep the blood stream and lymphatic systems of cancer cells. In light of recurrence frequency, I would advise you not decline this treatment.
    Read into Lung Cancer 101. Share it with your husband if he is inclined (I completely understand if he is not). Knowledge is power in addressing lung cancer and one of the two of you need to be informed enough to ask the "terribly perceptive" question. If you have questions during or after reading, this is the place for answers. There are many, many years of accumulated NED time on this forum.
    Stay the course.
    Tom
     
  18. Like
    Mally reacted to Steff in Stage IIIA Lung Cancer   
    Hi Denise,
    A great resource to look at is LUNGevity's Lung Cancer 101  here.   This information is kept up to date and will take you through what to expect throughout diagnosis, treatment, after, etc.  There are also great checklists of questions to ask the doctor.  
    While this may be a very grim time for you and your family, know that there is hope and many treatment options are available depending on the type of lung cancer.  My mom was diagnosed with non-small cell lung cancer adenocarcinoma over 4 years ago.  Despite the removal of her right upper lobe and a cancer recurrence, she is still alive an relatively well, living her life to the fullest - my mom was 60 at her diagnosis and not in perfect health.
    Finally, please don't be shocked if the oncologist tells you that your husband's lung cancer is not curable, but instead uses the term "No Evidence of Disease/NED".   Lung cancer can be so sneaky that it often pops up again, which is why people receive follow-up scans for awhile after treatment.  This is one reason why oncologists use "NED/No Evidence of Disease".  With a later stage diagnosis, you may be hearing this term rather than "cure".  Don't let it trip you up, it's just a reminder of how we need to be vigilant in keeping an eye on the cancer.
    I don't know if any of this helps...hope some of it does.  
    Take Care,
    Steff
  19. Like
    Mally reacted to Steff in Stage IIIA Lung Cancer   
    Hi Denise,
    A great resource to look at is LUNGevity's Lung Cancer 101  here.   This information is kept up to date and will take you through what to expect throughout diagnosis, treatment, after, etc.  There are also great checklists of questions to ask the doctor.  
    While this may be a very grim time for you and your family, know that there is hope and many treatment options are available depending on the type of lung cancer.  My mom was diagnosed with non-small cell lung cancer adenocarcinoma over 4 years ago.  Despite the removal of her right upper lobe and a cancer recurrence, she is still alive an relatively well, living her life to the fullest - my mom was 60 at her diagnosis and not in perfect health.
    Finally, please don't be shocked if the oncologist tells you that your husband's lung cancer is not curable, but instead uses the term "No Evidence of Disease/NED".   Lung cancer can be so sneaky that it often pops up again, which is why people receive follow-up scans for awhile after treatment.  This is one reason why oncologists use "NED/No Evidence of Disease".  With a later stage diagnosis, you may be hearing this term rather than "cure".  Don't let it trip you up, it's just a reminder of how we need to be vigilant in keeping an eye on the cancer.
    I don't know if any of this helps...hope some of it does.  
    Take Care,
    Steff
  20. Like
    Mally reacted to Tom Galli in How to starve cancer   
    Claudia, 
    I’ve not read the book you mention but many like it. I’m very pleased to learn you are consulting with your physician before you try any of the “curative” diet suggestions. 
    During treatment, my problem was consuming calories because chemo really affected my tastebuds. I also wonder at the top level how it is possible to starve cancer without starving the body. 
    I am unusually sensitive about people who publish the “I have a cure” book because a close friend believed, denied conventional treatment, and died well before his time.
    Stay the course.
    Tom 
  21. Like
    Mally reacted to Claudia in How to starve cancer   
    Hi Everyone!
    I came across a book called How To Starve Cancer by Jane Mcellend and it is very interesting. The author had stage IV lung cancer and through conventional and unconventional therapies has gone into remission. I haven't finished it but so far it seems to rely on a low carb, no sugar mediterranean diet and supplements to help chemo and other cancer treatments to be more effective. Things like taking low dose Asprin and Tagamet. I hesitate to jump into things that are just out there on the internet. I was wondering if anyone has read it or followed the diet and supplement plan. Yes, I will ask my dr but I'm interested in what you knowledgable people have to say about it. 
    Have a beautiful day,
    Claudia
  22. Like
    Mally reacted to Denise C in Broncoscopy   
    Anyone ever have a broncosocpy peformed and the thoracic surgeon say the lymph node looks suspicous but the pathology report say the lymph node is not cancerous?   
  23. Like
    Mally reacted to Denise C in Broncoscopy   
    Anyone ever have a broncosocpy peformed and the thoracic surgeon say the lymph node looks suspicous but the pathology report say the lymph node is not cancerous?   
  24. Like
    Mally reacted to BridgetO in Broncoscopy   
    No, but for a diferent, non-lung cancer, my surgeon took out 27 lymph nodes that he thought suspicious. 2 of them nearest my tumor were found by the pathologist to be malignant, but the rest were not. Initally the pathologist thought they all  looked suspicious, too, but under the microscope they were clearly not. So I think it's not unusual for a surgeon to think a node looks suspicous, but it isn't malignant.
  25. Like
    Mally got a reaction from Rower Michelle in Biopsy Results   
    Denise chasing lymph nodes for biopsy is stressful and I'm in that position at the moment and about to have some radiotherepy on 1 but with your dad I think they are being extra cautious which is better than just wait and see because it can be arrested sooner if they know what they are dealing with..good luck to you and your dad ..
×
×
  • Create New...