38 and diagnosed with stage 4 esophageal cancer

245

Comments

  • paul61
    paul61 Member Posts: 1,379 Member
    It is great to hear you are making positive progress!!!

    I am so glad to read that all of your tests are headed in a positive direction. I know it has been a difficult journey, and I am sure there were times when you wondered if it was all really worth it or not. I have to say if I were in your position, and making the progress you are in the trial program, it would be a difficult decision to go back to traditional chemotherapy and radiation. As an eight year survivor, I do believe in miracles. We see them every day if we just look around with the right perspective. It appears you still have more work to do here on earth. May there be many more good test results.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
    Eight Year Survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

     

  • 1979bmg
    1979bmg Member Posts: 47 Member
    The chemo-radiation at this

    The chemo-radiation at this point would only be considered if the current treatment starts to fail. But for now the current treatment continues to work amazingly well.

    I guess I am not too excited about the prospect of doing this for the rest of my life or even another year...especially if I do end up with a complete response. I guess I should be thankful that I have responded this well so far.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    1979bmg said:

    April 20th update

    Another amazing set of blood work and scans!

     

    For the first time since August, every single aspect of my blood work and urine test was completely normal. Even my platelets have skyrocketed up to 152 from 94 just under 2 weeks ago. They have been as low as 86 prior to treatment. My liver enzymes that were slightly elevated continue to slowly decrease.

     

    My Oxaliplatin was removed at the beginning of March due to worsening fevers the 2 days following treatment and increased neuropathy. They want everyone in my condition to do at least 8 consecutive rounds of it, I managed 13. It was not noted as Oxaliplatin failure, but might as well be in my book. Nasty, nasty stuff. And I hope they don't try giving it to me again. So I soldier on with Atezolizumab, Folfox, Leucovorin, Aloxi and Emend. With Oxaliplatin omitted, the current and last 3 treatments have been a picnic compared to what I was dealing with. The fatigue is still pretty pronounced for 2 days, but no more fever (and no more need to tax my already overworked liver with Tylonol to control it), no more severe body aches and chills, nausea not nearly as bad. Appetite is almost normal, even the 2 days after treatment.

     

    I did have walking pneumonia after my April 4th treatment, I think I have mostly shook it off and praying that I don't relapse. I was already sick starting treatment on April 4th, but figured it was just a cold and I had dealt with that before on chemo. It ended up turning into a sinus infection and chest congestion that wouldn't go away. The X-rays didn't show any obvious inflammation but sometimes that is common in early pneumonia with chemo patients. I had the typical wheezing and chest rattling, so I was put in some pretty heavy antibiotics.

     

    Now for the scans: Just like last time, the only cancer they can detect is in one of my right paratrachael lymph nodes. The SUV max has decreased from 3.9 to 3.3. compare that to the end of August when it was off the charts and still 12.6 in early November. And like every previous scan from November onward, the visual size appears to have decreased by almost half. They are not even positive that there is any cancer remaining there, it is possible that it is just remaining inflammation.

     

    They did notice some irregular and possibly inflamed nodules in my lungs, hopefully they are just remaining inflammation from pneumonia...the doc is pretty sure that is what they are.

     

    I am finally at a point where chemotherapy and radiation combined is at least a possibility. The downside is I would have to leave the immunitherapy trial, and there is no getting back into it once you leave. But what I am currently doing continues to work, and a complete response is still looking more and more likely at this point. I'm not sure if you believe in miracles, but statistically I should be dead or dying by now. 

    God must want me on this Earth a little longer for some reason.

    More Great News

    Hello,

    It's awesome to hear that you have even more great news.  Oxaliplatin is a rough ride, but it seems like you got a full course of it before stopping, so hopefully you got the full benefit.  I know what you mean about, "statistically I should be dead or dying by now."  I was scheduled to die in roughly June 2012.  I'm now six years past my projected life expectancy and I am still testing clean (just had my latest CT scan Wednesday & will get back results Tuesday---planning on more good results). 

    You said that you aren't exited about doing treatments for the rest of your life or even another year.  I've been getting herceptin weekly since 2011.  The first six months was alongside folfox and the last six years has been just by itself.  Currently, the plan is to continue on with it indefinitely.  Going for weekly treatment for years and years is its own special sort of draining.  Because I'm still receiving treatment, I also have monthly oncologist appointments, monthly bloodwork and regular echocardiograms.  It is definitely taxing, especially since I could stop at any time and just say, "I've had a complete response, I don't need to keep doing all this crap."  However, I keep going because I was supposed to die in 2012, but something worked exremely well for me.  We think it is the herceptin, so we continue on with it.  Last thing I want to do is walk away and find out that the herceptin was the only thing holding off another recurrence.  Given that you know full well that you should be dead or dying by now, continuing on with treatment is a small price to pay.  It sucks (believe me, I know), but the alternative sucks a lot worse.

    May you have many more years of great news,

    Ed

  • 1979bmg
    1979bmg Member Posts: 47 Member
    April 20th update

    Another amazing set of blood work and scans!

     

    For the first time since August, every single aspect of my blood work and urine test was completely normal. Even my platelets have skyrocketed up to 152 from 94 just under 2 weeks ago. They have been as low as 86 prior to treatment. My liver enzymes that were slightly elevated continue to slowly decrease.

     

    My Oxaliplatin was removed at the beginning of March due to worsening fevers the 2 days following treatment and increased neuropathy. They want everyone in my condition to do at least 8 consecutive rounds of it, I managed 13. It was not noted as Oxaliplatin failure, but might as well be in my book. Nasty, nasty stuff. And I hope they don't try giving it to me again. So I soldier on with Atezolizumab, Folfox, Leucovorin, Aloxi and Emend. With Oxaliplatin omitted, the current and last 3 treatments have been a picnic compared to what I was dealing with. The fatigue is still pretty pronounced for 2 days, but no more fever (and no more need to tax my already overworked liver with Tylonol to control it), no more severe body aches and chills, nausea not nearly as bad. Appetite is almost normal, even the 2 days after treatment.

     

    I did have walking pneumonia after my April 4th treatment, I think I have mostly shook it off and praying that I don't relapse. I was already sick starting treatment on April 4th, but figured it was just a cold and I had dealt with that before on chemo. It ended up turning into a sinus infection and chest congestion that wouldn't go away. The X-rays didn't show any obvious inflammation but sometimes that is common in early pneumonia with chemo patients. I had the typical wheezing and chest rattling, so I was put in some pretty heavy antibiotics.

     

    Now for the scans: Just like last time, the only cancer they can detect is in one of my right paratrachael lymph nodes. The SUV max has decreased from 3.9 to 3.3. compare that to the end of August when it was off the charts and still 12.6 in early November. And like every previous scan from November onward, the visual size appears to have decreased by almost half. They are not even positive that there is any cancer remaining there, it is possible that it is just remaining inflammation.

     

    They did notice some irregular and possibly inflamed nodules in my lungs, hopefully they are just remaining inflammation from pneumonia...the doc is pretty sure that is what they are.

     

    I am finally at a point where chemotherapy and radiation combined is at least a possibility. The downside is I would have to leave the immunitherapy trial, and there is no getting back into it once you leave. But what I am currently doing continues to work, and a complete response is still looking more and more likely at this point. I'm not sure if you believe in miracles, but statistically I should be dead or dying by now. 

    God must want me on this Earth a little longer for some reason.

  • 1979bmg
    1979bmg Member Posts: 47 Member
    paul61 said:

    It is great to hear you are making positive progress!!!

    I am so glad to read that all of your tests are headed in a positive direction. I know it has been a difficult journey, and I am sure there were times when you wondered if it was all really worth it or not. I have to say if I were in your position, and making the progress you are in the trial program, it would be a difficult decision to go back to traditional chemotherapy and radiation. As an eight year survivor, I do believe in miracles. We see them every day if we just look around with the right perspective. It appears you still have more work to do here on earth. May there be many more good test results.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
    Eight Year Survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

     

    Paul61

    Paul61, are you still doing any sort of treatment?

  • paul61
    paul61 Member Posts: 1,379 Member
    1979bmg said:

    Paul61

    Paul61, are you still doing any sort of treatment?

    Just an annual EGD follow up

    1979bmg,

    After year seven I am no longer in contact with my oncologist. I just have an annual endoscopy with biopsies at the anastamosis and the standard blood work you would receive with a typical annual physical.

    Paul

     

  • 1979bmg
    1979bmg Member Posts: 47 Member
    paul61 said:

    Just an annual EGD follow up

    1979bmg,

    After year seven I am no longer in contact with my oncologist. I just have an annual endoscopy with biopsies at the anastamosis and the standard blood work you would receive with a typical annual physical.

    Paul

     

    What brought on the decision

    What brought on the decision to stop treatment? Did you do the esophagectomy surgery?

  • 1979bmg
    1979bmg Member Posts: 47 Member
    Does anyone know of someone like me who is nable to have surgery

    ...who is unable to have surgery as a stage 4, and has survived long-term? As in more than 5 or 7 years? I know the long term survival rate is terrible generally speaking, I am just wondering...Lots to thnk about.

  • paul61
    paul61 Member Posts: 1,379 Member
    1979bmg said:

    What brought on the decision

    What brought on the decision to stop treatment? Did you do the esophagectomy surgery?

    I had an esophagectomy in 2009

    I had an esophagectomy in 2009. Unfortunately my surgical pathology indicated that I had active cancer in a lymph node so I had five months of chemotherapy after surgery. Since then I have had clean scans and endoscopies. One day at a time :)

    Paul

  • paul61
    paul61 Member Posts: 1,379 Member
    1979bmg said:

    Does anyone know of someone like me who is nable to have surgery

    ...who is unable to have surgery as a stage 4, and has survived long-term? As in more than 5 or 7 years? I know the long term survival rate is terrible generally speaking, I am just wondering...Lots to thnk about.

    Jane Pickett is at over 20 years

    The longest-term stage 4 survivor, without surgery, I am aware of is Jane Pickett. I believe Jane is now over 20 years as a survivor. Of course, that is very unusual; but it proves it is possible. Jane was diagnosed with EC at a young age. If you go to the esophageal cancer section of the “Smart Patients” web site you will find several long term stage 4 survivors that post there regularly. https://www.smartpatients.com/communities

     Paul

  • WillBBlessed
    WillBBlessed Member Posts: 2
    Keep it up!

    Hi 1979bmg,

    I'm also 38 yrs old and was diagnosed with Stage 4 EC back in Sept 2017. The news came as a shock at the time but now that I think about the possible causes (acid reflux) I can see how it's possible. At the time I was diagnosed, it was also found in the liver. In Sept 17 I started on the Oxilaplatin, 5FU & HER2 regimen but during my 3rd treatment I had an anaphylactic reaction so we had to stop. While the doctor figured out which chemo combo would be suggested I had an upper endoscopy & scans done. The endoscopy showed that the tumor in my esophagus (actually in the GI junction) disappeared but the scans showed the liver had no response. Prior to these news the doctors didn't even want to operate on my liver. Getting those results in Nov opened up the door for liver resection, which was done on Dec 13 (my birthday!). After recovering from surgery the doctors had already figured out they wanted to do Cisplatin, 5FU + HER2, so we started and the side effects of Cisplat vs Oxilaplatin were twice as bad (especially with fatigue & nausea). I went through 4 rounds of that regimen and had new scans + upper endoscopy done 1.5 weeks ago. The results weren't what we were expecting. The GI doc found that the tumor in the esophagus was back and is now bigger than it was when I was diagnosed, which means the new chemo treatments weren't very effective. The good news is that it has yet to spread. The oncologist is now recommending radiation + oral 5FU for 5 weeks - I have appointment with radiologist this week. The goal is to reduce the size of the tumor and talk about surgery (removal of part of esophagus + part, if not all, of the stomach). The doctor also said that a lot of patients go into remission from radiation. Before I start radiation treatment, my wife and I are planning to visit MD Anderson in Houston, TX next week. I want them to review my case and make sure they are in agreemtn with how we're moving fwd. 

    The journey has been one heck of a ride. I'm blessed to have a very supportive family. My wife is a cancer survivor and continues to be "clean" (her last chemo treatment was in Nov 2016). She has been such a rock and having gone through it herself (AND being a nurse), she knows how I feel. 

    I'm also a believer and have leaned on my faith a lot but my struggle continues to be a mental one. Knowing that I have EC is always on my mind and it is so hard to shake it off. The depression is brutal and its starting to impact my home/work life a little (I have two daughters and I'm able to hide it pretty well from them). You seem to have such a positive attitude and I admire you for that but, how do you do it? I know that in the end I am going to be okay because I have that promise from God, but still I have these mental struggles.

    Thanks,
    Will

     

  • 1979bmg
    1979bmg Member Posts: 47 Member

    Keep it up!

    Hi 1979bmg,

    I'm also 38 yrs old and was diagnosed with Stage 4 EC back in Sept 2017. The news came as a shock at the time but now that I think about the possible causes (acid reflux) I can see how it's possible. At the time I was diagnosed, it was also found in the liver. In Sept 17 I started on the Oxilaplatin, 5FU & HER2 regimen but during my 3rd treatment I had an anaphylactic reaction so we had to stop. While the doctor figured out which chemo combo would be suggested I had an upper endoscopy & scans done. The endoscopy showed that the tumor in my esophagus (actually in the GI junction) disappeared but the scans showed the liver had no response. Prior to these news the doctors didn't even want to operate on my liver. Getting those results in Nov opened up the door for liver resection, which was done on Dec 13 (my birthday!). After recovering from surgery the doctors had already figured out they wanted to do Cisplatin, 5FU + HER2, so we started and the side effects of Cisplat vs Oxilaplatin were twice as bad (especially with fatigue & nausea). I went through 4 rounds of that regimen and had new scans + upper endoscopy done 1.5 weeks ago. The results weren't what we were expecting. The GI doc found that the tumor in the esophagus was back and is now bigger than it was when I was diagnosed, which means the new chemo treatments weren't very effective. The good news is that it has yet to spread. The oncologist is now recommending radiation + oral 5FU for 5 weeks - I have appointment with radiologist this week. The goal is to reduce the size of the tumor and talk about surgery (removal of part of esophagus + part, if not all, of the stomach). The doctor also said that a lot of patients go into remission from radiation. Before I start radiation treatment, my wife and I are planning to visit MD Anderson in Houston, TX next week. I want them to review my case and make sure they are in agreemtn with how we're moving fwd. 

    The journey has been one heck of a ride. I'm blessed to have a very supportive family. My wife is a cancer survivor and continues to be "clean" (her last chemo treatment was in Nov 2016). She has been such a rock and having gone through it herself (AND being a nurse), she knows how I feel. 

    I'm also a believer and have leaned on my faith a lot but my struggle continues to be a mental one. Knowing that I have EC is always on my mind and it is so hard to shake it off. The depression is brutal and its starting to impact my home/work life a little (I have two daughters and I'm able to hide it pretty well from them). You seem to have such a positive attitude and I admire you for that but, how do you do it? I know that in the end I am going to be okay because I have that promise from God, but still I have these mental struggles.

    Thanks,
    Will

     

    Hi Will

    How do I do it?

    Well, sometimes I am not the best at it myself. (Keeping a positive attitude that is). I guess 90% percent of my strength (mentally and physically) comes from my faith and trust in God, if my earthly journey is cut short, my future is still set up in the afterlife. I don't think this is ever easy for anyone, I have my bad days where I am depressed and disheartened that there will probably never be a definite cure in my lifetime even if I am a long term survivor. We all have our own cross to bear in a different way.

     

    I don't have kids, just a fiance that stood by me through the worst of it, even when I get depressed and despondent and feel like giving up on myself. I can't imagine what you are going through looking into the eyes of your wife and children. I wouldn't wish that on anyone. I am sorry that your treatments are going so rough. I have been very fortunate so far in that regard.

     I also have a small spot on my liver, they keep calling it a " tiny indeterminate lesion" and can't indentify what it really is. They thought it was possibly cancer at first, but keep claiming it is too small to biopsy. It remains completely unchanged since August, it is possibly a benign cyst. My kidneys and liver are both functioning normal for the time being. 

    I guess one thing I can say is the cancer has brought me closer to God and forced me to reexamine my whole life.

     

    I will tell you this, prior to my cancer diagnosis, I lived a very meaningless life. I wasn't really a terrible person, but my whole existence and drive for life was self centered and very carnal. I let a few bad experiences in my past cause me to be jaded and negative, and was basically I walking dead man long before the cancer diagnosis. The cancer diagnosis forced me to acknowledge what is truly important in life. 

     

    Even when I was first diagnosed, I didn't really feel like I was ready to die or that I was going to die soon. I was somewhat of an anomaly, although I was stage 4 I didn't really feel that terribly sick, and my blood work was completely normal, except for the the things that they really dig deep for like cancer antigens, which were off the charts in my case.

     

    I guess what I am trying to get at is while you have time, make sure your life still makes a difference. How do you want your friends and family to remember you? Someone brought this up to be a few months ago,  I think it was deathorglory: although not everyone replies to these posts you can see that most of them end up with thousands of views eventually. Maybe you can give a ray of hope for someone who is struggling and ready to give up, by posting steps from your journey. I feel whether you are sick with cancer or not, you will get some inner peace by knowing your life has made a difference and helped someone else. This website and the people who post on it have helped me a lot, and I pray that I have the strength to stay positive if and when I have an office visit with some not so good results.

     Stay strong brother, and keep fighting.

     

     

     

  • WillBBlessed
    WillBBlessed Member Posts: 2
    1979bmg said:

    Hi Will

    How do I do it?

    Well, sometimes I am not the best at it myself. (Keeping a positive attitude that is). I guess 90% percent of my strength (mentally and physically) comes from my faith and trust in God, if my earthly journey is cut short, my future is still set up in the afterlife. I don't think this is ever easy for anyone, I have my bad days where I am depressed and disheartened that there will probably never be a definite cure in my lifetime even if I am a long term survivor. We all have our own cross to bear in a different way.

     

    I don't have kids, just a fiance that stood by me through the worst of it, even when I get depressed and despondent and feel like giving up on myself. I can't imagine what you are going through looking into the eyes of your wife and children. I wouldn't wish that on anyone. I am sorry that your treatments are going so rough. I have been very fortunate so far in that regard.

     I also have a small spot on my liver, they keep calling it a " tiny indeterminate lesion" and can't indentify what it really is. They thought it was possibly cancer at first, but keep claiming it is too small to biopsy. It remains completely unchanged since August, it is possibly a benign cyst. My kidneys and liver are both functioning normal for the time being. 

    I guess one thing I can say is the cancer has brought me closer to God and forced me to reexamine my whole life.

     

    I will tell you this, prior to my cancer diagnosis, I lived a very meaningless life. I wasn't really a terrible person, but my whole existence and drive for life was self centered and very carnal. I let a few bad experiences in my past cause me to be jaded and negative, and was basically I walking dead man long before the cancer diagnosis. The cancer diagnosis forced me to acknowledge what is truly important in life. 

     

    Even when I was first diagnosed, I didn't really feel like I was ready to die or that I was going to die soon. I was somewhat of an anomaly, although I was stage 4 I didn't really feel that terribly sick, and my blood work was completely normal, except for the the things that they really dig deep for like cancer antigens, which were off the charts in my case.

     

    I guess what I am trying to get at is while you have time, make sure your life still makes a difference. How do you want your friends and family to remember you? Someone brought this up to be a few months ago,  I think it was deathorglory: although not everyone replies to these posts you can see that most of them end up with thousands of views eventually. Maybe you can give a ray of hope for someone who is struggling and ready to give up, by posting steps from your journey. I feel whether you are sick with cancer or not, you will get some inner peace by knowing your life has made a difference and helped someone else. This website and the people who post on it have helped me a lot, and I pray that I have the strength to stay positive if and when I have an office visit with some not so good results.

     Stay strong brother, and keep fighting.

     

     

     

    Thank you!

    Thank you for sharing and the encouraging words. Like you, I didn't feel terribly bad when I got my diagnosis so it came like a total shock (like most ppl). I was actually feeling great that week prior b/c I had just completed a "Boot Camp" where I had lost 20 lbs and felt the best I had felt in years. Then the news came. I completely passed out at the Dr's office when I heard stage 4. I've had my ups and my downs but recently it seems like it's been mostly downs. Liuke you, I have become a lot more involved with my faith and I pray so much every day asking God for healing, peace and strength. I believe that God is willing and more than able to provide these things but He also needs to see effort and obidience from us, this is what I'm working on. I strongly feel that my purpose in life is to help others so if my journey can bring light and strength to someone else I'll be more than happy to share ... and I will by starting a new thread/post on here with my journey. 

    Thank you again and you too stay strong, have faith and keep pushing forward!

    P.S. What is having faith? It's believing before you can see the results. 

  • 1979bmg
    1979bmg Member Posts: 47 Member
    paul61 said:

    Jane Pickett is at over 20 years

    The longest-term stage 4 survivor, without surgery, I am aware of is Jane Pickett. I believe Jane is now over 20 years as a survivor. Of course, that is very unusual; but it proves it is possible. Jane was diagnosed with EC at a young age. If you go to the esophageal cancer section of the “Smart Patients” web site you will find several long term stage 4 survivors that post there regularly. https://www.smartpatients.com/communities

     Paul

    Smart Patient forum

    Paul61, I did finally post in the Esophageal Cancer community on the link you listed. There a a few stage 4 short and long term survivors that have already replied. Thank you so much for posting the link. 

    My username is "nolymphnodes". They don't allow numbers with usernames, and it was the most brilliant thing I could cone up with quickly on my phone.

     

    I think you have to create a username and join a community to read the messages on that webpage.

  • 1979bmg
    1979bmg Member Posts: 47 Member
    edited June 2018 #36
    Clear Scans

    I have the results of my most recent scans back on the 12th, Both CT and PET continue to show a complete metabolic response, no new evidence of metastatic disease. The right upper paratrachael lymph node, the last known area of cancer and inflammation, shows a max SUV of 2.1 compared to above 3 in April. 

    The short term plan is to continue the present treatment indefinitely, based on the fact that my body tolerates it reasonably well.

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited June 2018 #37
    Step by Step

    Hello,

    Step by step you just keep moving in the right direction.  I hope it keeps up for you.

    Best Wishes,

    Ed

  • 1979bmg
    1979bmg Member Posts: 47 Member
    11 month update

    The results of my CT and PET scan earlier this week show a possible recurrance at the site of the original tumor just above the GE junction.

     

    The SUV on PET scans shows an increase up to 3.6, from 3.2 in June and 2.8 in April. It is also possible that this is inflammation or "physiologic activity", whatever that means.

     

    CT didn't show anything other than slightly enlarged spleen, everything else looked fine. One odd thing was my urine specific gravity was a bit high...they told me liver and kidney function is fine as far as they can tell...

    I did my test immediately after CT scan, maybe that contrast die can increase specific gravity?

     

    On the plus side, some uptake that was there in the upper stomach (gastric fundus) has decreased to 4.3 from 5.0. The upper right paratrachael lymph node, the last known sight of severe cancer infection, looks to have completely resolved with stable central calcification.

     

    I am a little miffed about them telling me a had a complete response, when it looks to me like that might not have been the case. The waiting game begins once again till late October/ early november unless things change.

     

    It is a little disheartening to show nothing but progress and have a possible setback now, but I am still sitting way better now compared to a year ago.

     

     Plan for now is to continue with current treatment as long as I am able.

     

    I am also trying to completely give up coffee and soda pop, no coffee since Wednesday morning, the only caffeine I have had was some Earl Grey tea yesterday...haven't had any bad withdrawal symptoms so far, and I actually seemed to sleep better the last few nights.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    I say--Enjoy the simple things N life like Coffee & soda pop

    Dear Fellow Stage IV Cancer friend,

    Thanks for your update.  You’ve been on my prayer list for a long time now.  It’s comforting to know that many people that we’ve never met pray for us to have “peace of mind” as we battle our cancers.  The number that you, Ed and I, as well as many others, are concerned with is a big IV !  So for us, although “curative surgery” is not an option, we seek to have the longest period of time of progression free survival (PFS) before something else “pops up” to rob us of our peace of mind.  Mind you I am 40 years your senior at age 79, but our concerns are the same relative to Stage IV cancer. 

    Primarily I answer this forum as the wife of William who is now in his 16th year of “remission” since his diagnosis of Adenocarcinoma at the Gastroesophageal junction, Stage III (T3N1M0).  However, I now write as a Stage IV survivor in my own right also as of November 2012.  For instance, I just went for a CT scan yesterday.  Next week I will know if the “sharp stinging sensation beneath my shoulder blades indicates further accumulation of cancerous fluid in the lining of my Lung, or if the cancer has penetrated the Lung itself.  You know our organs are certainly “knit closely together.”  Having now been through 4 different series of chemotherapy of Carboplatin/Paclitaxel (Taxol) as well as Cytoreductive surgery, and targeted radiation, my options are certainly diminishing.  Yet my desire is to concentrate on the quality of life I still enjoy. 

    Survival with some quality of life, albeit somewhat diminished, is the name of the game, is it not?  Naturally we hope for the best quality of life along the way.  Sometimes it is possible to “feel a lot better” than the scan results indicate.  At other times we are surprised by what the scans show.  Sometimes the results are mixed.  There are both positive and negative results in the same report.  So what are we to do?  You are like me in that you are doing the best you can do considering the stage of your cancer. 

    May I make a few “light-hearted comments?”

    Your statement, “On the plus side, some uptake that was there in the upper stomach (gastric fundus) has decreased to 4.3 from 5.0. The upper right paratrachael lymph node, the last known sight of severe cancer infection, looks to have completely resolved with stable central calcification.” is good news.

    I’m glad that you can see both the “good” and the “not-so-good” and still be upbeat and thankful that you’ve had made some progress along this “palliative pathway.”  And as for “the waiting game” till the next scans, I find it best not to try to think that far ahead.  No doubt, that is your battle as well.  This cancer does try to steal your peace of mind.  And without a positive outlook, even when we have faced the facts of our cancer, the ever-present temptation is to let the future prospects steal our joy in the moment. 

    You sound like a positive person that is able to take the good with the bad.  And when you can do that, you can live in the moment and enjoy simple things in life that we have always enjoyed.  Sometimes I call myself, “Dr. Marshall” because I have a knack for telling others what to do, even when they haven’t asked.  And so, let me put on my “Dr. Marshall” hat for a moment, and comment on your last paragraph in which you say, “…am also trying to completely give up coffee and soda pop, no coffee since Wednesday morning…”

    May I ask if your oncologist suggested that your quality of life would increase if you “gave up” the simple pleasure of smelling the aroma of coffee brewing, and then consuming a good tasting cup of that hot coffee?  That goes for foregoing the simple pleasure of an ever-refreshing taste of ice-cold soda pop too. 

    Unless and until the caffeine gives me the urge to jump off the roof from “over stimulation”, I will NOT forfeit these simple things in life.  (Now if we were talking alcohol consumption that would be a different story!)  But as long as I still have the ability to "smell and taste”, I will forever enjoy an ice-cold soda pop.  The smell of coffee is great but I simply never cultivated a taste for coffee.  I’ve tried it, but I have to put so much sugar and milk in it, I’m thinking it’s more like “hot chocolate”.  And by the way, I like hot chocolate chocked full of miniature marshmallows.  Those are simple things in life that I will not “give up” until I find that chocolate, coffee and soda pop are the culprits that caused me to have Stage IV cancer.  My favorite soda is “Diet Coke” with caffeine. 

    Incidentally, I stopped worrying about being “fat” and counted my last calorie the day I was diagnosed with Peritoneal Carcinomatosis and 3 weeks later after a SECOND opinion, Ovarian Cancer, Stage IV.  The “fat-worry factor” plummeted quickly and was replaced by something far more serious like coping with Stage IV cancer! And all that fretting that we women do about gaining too much weight fell by the wayside.  Inadvertently and unintentionally, I've dropped 30# since my diagnosis back in 2012, but it's nice not to look in the mirror and say, "Uugghh I need to lose weight."  Instead I look in the mirror, and even with no hair, I'm satisfied with the way I look because I'm still here and am still enjoying the simple things in life.  

    And so since, I don’t charge anything for my advice, you don’t have to take it, but I say, “Find a peaceful spot, perhaps in your own backyard, listen to the birds serenade you with song, meditate on the things you still have like a “good mind” and faithful friends while you enjoy a good cup of “Joe” or sip on an ice-cold soda pop.  Just this very morning, I watched a hummingbird fly from flower to flower, as well as sip some sweet water from my hummingbird feeder.  That was a simple pleasure.  And speaking of birds, if God sees every sparrow that falls, and I believe that He does, He surely cares even more for us.  Yes, “living one day at a time is easier said than done when we wake up each morning with cancer and go to bed with cancer.  But my calendar says this is August 12th and I know not what September will bring, or even later on today, for that matter.  So soak in every enjoyable moment you can.  Try not to let November worries jump in ahead of August and September of 2018. 

    Do something good for someone else, and don’t forget to treat yourself by doing things that you enjoy like “simply” consuming coffee and soda pop!  I’ve already had one Coke this morning.  Kiss

    God bless you my friend.

    Love Loretta

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    1979bmg said:

    11 month update

    The results of my CT and PET scan earlier this week show a possible recurrance at the site of the original tumor just above the GE junction.

     

    The SUV on PET scans shows an increase up to 3.6, from 3.2 in June and 2.8 in April. It is also possible that this is inflammation or "physiologic activity", whatever that means.

     

    CT didn't show anything other than slightly enlarged spleen, everything else looked fine. One odd thing was my urine specific gravity was a bit high...they told me liver and kidney function is fine as far as they can tell...

    I did my test immediately after CT scan, maybe that contrast die can increase specific gravity?

     

    On the plus side, some uptake that was there in the upper stomach (gastric fundus) has decreased to 4.3 from 5.0. The upper right paratrachael lymph node, the last known sight of severe cancer infection, looks to have completely resolved with stable central calcification.

     

    I am a little miffed about them telling me a had a complete response, when it looks to me like that might not have been the case. The waiting game begins once again till late October/ early november unless things change.

     

    It is a little disheartening to show nothing but progress and have a possible setback now, but I am still sitting way better now compared to a year ago.

     

     Plan for now is to continue with current treatment as long as I am able.

     

    I am also trying to completely give up coffee and soda pop, no coffee since Wednesday morning, the only caffeine I have had was some Earl Grey tea yesterday...haven't had any bad withdrawal symptoms so far, and I actually seemed to sleep better the last few nights.

    It Can Be a Bumpy Road

    Hello,

    You've been moving forward with such good news for quite a while.  Now it looks like you're running into some bumps in the road.  Unfortunately, that's the way it works a lot of times.  Even the most positive success stories run into some difficulties.  Hopefully, it is just inflammation from an infection or something benign like that.  I just had a big scare myself where I had new, rapidly growing nodules show up in a lung.  They lit up on the PET/CT and I went to get them biopsied.  At the biopsy, they were no longer there and it was concluded that it was just freakish timing between a lung infection and my tests.  We were still scared to death and were thinking there was a good chance I'd be dead by Christmas.  Hopefully, your stuff turns out like mine did.  

    I've had two "complete responses".  "Complete response" and "no evidence of disease" don't necessarily mean cured.  They mean that the doctors can't see any cancer.  There still might be some hiding somewhere.  My first complete response was my first time around when I was stage 3 and roughly your age.  I thought I was in the clear, but still had a recurrence a couple of years later.  The second time it had metastasized to a lung and I was stage 4.  My treatment was pretty rough, but I had another complete response.  That was 2011 and I'm still testing clean.  But I'm always wary/nervous about it coming back again.  I hope your story works out like mine.  

    Why are you giving up coffee & soda?  Doctor's recommendation?  I'm sure it will help with sleep, but there's a LOT of people who can't even begin to function in the world without their coffee.  I hope it works however you're hoping it does.

    Best Wishes,

    Ed

  • 1979bmg
    1979bmg Member Posts: 47 Member

    I say--Enjoy the simple things N life like Coffee & soda pop

    Dear Fellow Stage IV Cancer friend,

    Thanks for your update.  You’ve been on my prayer list for a long time now.  It’s comforting to know that many people that we’ve never met pray for us to have “peace of mind” as we battle our cancers.  The number that you, Ed and I, as well as many others, are concerned with is a big IV !  So for us, although “curative surgery” is not an option, we seek to have the longest period of time of progression free survival (PFS) before something else “pops up” to rob us of our peace of mind.  Mind you I am 40 years your senior at age 79, but our concerns are the same relative to Stage IV cancer. 

    Primarily I answer this forum as the wife of William who is now in his 16th year of “remission” since his diagnosis of Adenocarcinoma at the Gastroesophageal junction, Stage III (T3N1M0).  However, I now write as a Stage IV survivor in my own right also as of November 2012.  For instance, I just went for a CT scan yesterday.  Next week I will know if the “sharp stinging sensation beneath my shoulder blades indicates further accumulation of cancerous fluid in the lining of my Lung, or if the cancer has penetrated the Lung itself.  You know our organs are certainly “knit closely together.”  Having now been through 4 different series of chemotherapy of Carboplatin/Paclitaxel (Taxol) as well as Cytoreductive surgery, and targeted radiation, my options are certainly diminishing.  Yet my desire is to concentrate on the quality of life I still enjoy. 

    Survival with some quality of life, albeit somewhat diminished, is the name of the game, is it not?  Naturally we hope for the best quality of life along the way.  Sometimes it is possible to “feel a lot better” than the scan results indicate.  At other times we are surprised by what the scans show.  Sometimes the results are mixed.  There are both positive and negative results in the same report.  So what are we to do?  You are like me in that you are doing the best you can do considering the stage of your cancer. 

    May I make a few “light-hearted comments?”

    Your statement, “On the plus side, some uptake that was there in the upper stomach (gastric fundus) has decreased to 4.3 from 5.0. The upper right paratrachael lymph node, the last known sight of severe cancer infection, looks to have completely resolved with stable central calcification.” is good news.

    I’m glad that you can see both the “good” and the “not-so-good” and still be upbeat and thankful that you’ve had made some progress along this “palliative pathway.”  And as for “the waiting game” till the next scans, I find it best not to try to think that far ahead.  No doubt, that is your battle as well.  This cancer does try to steal your peace of mind.  And without a positive outlook, even when we have faced the facts of our cancer, the ever-present temptation is to let the future prospects steal our joy in the moment. 

    You sound like a positive person that is able to take the good with the bad.  And when you can do that, you can live in the moment and enjoy simple things in life that we have always enjoyed.  Sometimes I call myself, “Dr. Marshall” because I have a knack for telling others what to do, even when they haven’t asked.  And so, let me put on my “Dr. Marshall” hat for a moment, and comment on your last paragraph in which you say, “…am also trying to completely give up coffee and soda pop, no coffee since Wednesday morning…”

    May I ask if your oncologist suggested that your quality of life would increase if you “gave up” the simple pleasure of smelling the aroma of coffee brewing, and then consuming a good tasting cup of that hot coffee?  That goes for foregoing the simple pleasure of an ever-refreshing taste of ice-cold soda pop too. 

    Unless and until the caffeine gives me the urge to jump off the roof from “over stimulation”, I will NOT forfeit these simple things in life.  (Now if we were talking alcohol consumption that would be a different story!)  But as long as I still have the ability to "smell and taste”, I will forever enjoy an ice-cold soda pop.  The smell of coffee is great but I simply never cultivated a taste for coffee.  I’ve tried it, but I have to put so much sugar and milk in it, I’m thinking it’s more like “hot chocolate”.  And by the way, I like hot chocolate chocked full of miniature marshmallows.  Those are simple things in life that I will not “give up” until I find that chocolate, coffee and soda pop are the culprits that caused me to have Stage IV cancer.  My favorite soda is “Diet Coke” with caffeine. 

    Incidentally, I stopped worrying about being “fat” and counted my last calorie the day I was diagnosed with Peritoneal Carcinomatosis and 3 weeks later after a SECOND opinion, Ovarian Cancer, Stage IV.  The “fat-worry factor” plummeted quickly and was replaced by something far more serious like coping with Stage IV cancer! And all that fretting that we women do about gaining too much weight fell by the wayside.  Inadvertently and unintentionally, I've dropped 30# since my diagnosis back in 2012, but it's nice not to look in the mirror and say, "Uugghh I need to lose weight."  Instead I look in the mirror, and even with no hair, I'm satisfied with the way I look because I'm still here and am still enjoying the simple things in life.  

    And so since, I don’t charge anything for my advice, you don’t have to take it, but I say, “Find a peaceful spot, perhaps in your own backyard, listen to the birds serenade you with song, meditate on the things you still have like a “good mind” and faithful friends while you enjoy a good cup of “Joe” or sip on an ice-cold soda pop.  Just this very morning, I watched a hummingbird fly from flower to flower, as well as sip some sweet water from my hummingbird feeder.  That was a simple pleasure.  And speaking of birds, if God sees every sparrow that falls, and I believe that He does, He surely cares even more for us.  Yes, “living one day at a time is easier said than done when we wake up each morning with cancer and go to bed with cancer.  But my calendar says this is August 12th and I know not what September will bring, or even later on today, for that matter.  So soak in every enjoyable moment you can.  Try not to let November worries jump in ahead of August and September of 2018. 

    Do something good for someone else, and don’t forget to treat yourself by doing things that you enjoy like “simply” consuming coffee and soda pop!  I’ve already had one Coke this morning.  Kiss

    God bless you my friend.

    Love Loretta

    With me, it is just the fact

    With me, it is just the fact that I can't stop with just one cup...I will usually drink the whole pot that I make through the course of the day, and it will leave my stomach with this dull burning feeling for hours and hours if I have much more than a cup.

     

    I have found I don't really have any of the withdrawal symptoms...even after a week of quitting... other than being a little more sluggish and tired...especially during exercise.

     

    I will probably have an occasional cup or soda pop, but I do not want to be the 8, 9, 10+ cup per day person that I was when all of this started.

     

    Soda pop...well, I am one of the few cancer patients that can't seem to lose weight. I am hoping it isn't a thyroid issue, because I am actually trying. I don't really enjoy soda pop or anything overly sugary like I did when I was younger, plus between soda pop, GERD, coffee and chemotherapy it has all wreaked havoc on my teeth the past 5 years. Up until 2014 I never had any dental work done, now it seems like it is constant.