Five Years Since Stage IV Diagnosis
I had an appointment with my oncologist yesterday, which is five years since I was diagnosed with a Stage IV recurrence in my left lung of the original EC. Five years ago I was told to get my affairs in order (sooner, not later) and told that most folks live 7-8 months from where I was. Fortunately for me, that prognosis was off by a little bit. Yesterday I got the results back from my latest scans (last week) and everything was clean and free from any cancer.
I'm putting this out there as a ray of hope to the too many folks who find themselves in an awful spot. Nothing is perfect for me, a lot of things are different than they used to be, but I'm alive and everything is stable and manageable. If things can turn out like this for me, there's no reason why things can't work like this for you. Don't quit on yourself or your loved one.
I'd also like to pass along a couple of thank yous to a couple of folks who I know don't read this site, but it'll make me feel good to know I thanked them publicly, anyway. My oncologist is world class. I'm a little biased, but I think Joe Biden did a good job by selecting her to his blue ribbon panel for his cancer moonshot. So thanks to her. Also, thanks to my wife. She's put up with a lot and I'd surely be dead without her help and support.
I've also regained all of the weight I've lost since my 1st go around in 2008. This Saturday at my weekly chemo weigh-in I was 165 and 4 ounces. 165 is my pre cancer weight. It's been a long hard road to gain everything back. The surgery makes weight gain very difficult.
Good week for me!!
Ed
Comments
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Congratulations!!!
I am so glad to read your good news Ed. It is a message of hope for people who are struggling with this difficult disease. May you have many more years to share your good news.
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
Six Year Survivor0 -
Ed & Paul~Two inspirational testimonies~There R EC survivors!
Hello to both Ed and Paul:
Let me say how happy it makes me to see Esophageal Cancer Survivors. And it is so encouraging for those who are just starting out on this journey, and really cannot know what their travels will involve before it is all over. So everyone that comes on here and let’s “newbies” know that there is “life after an Esophageal Cancer diagnosis” is helping lift someone’s hopes and spirits.
And you’re right, where would we be without our spouses? Back in 2002 when William (Billy) was first diagnosed, you may as well told me that I had Esophageal Cancer. We are “ONE” in every way. We’ve matured a lot since we first learned that a “hiccup” could actually be spelled “Esophageal Cancer Stage III” (T3N1M0). I know how your wife feels as the caregiver, and I’m sure the two of you are closer together than ever before. Cancer has a way of sorting out the trivial from the important things in life. And we do really begin to cherish a new day as just that, because we don’t know how many we will have.
And Paul, we’ve been friends for a long time, and we’re so encouraged by your continued “cancer free” reports. You are a support for those who are in the “thick of it right now” and is helpful in so many ways. And ED, you’re supportive in a different kind of way because you first went through the initial diagnosis, had a time of complete success, only to find that later there would be a recurrence. And in that Stage IV category, you have to be a role model and an inspiration.
As for me, I just started right off with Stage IV Peritoneal Carcinomatosis/Ovarian Cancer Stage IV back in November of 2012. I am blessed to still be here, because I had a 6-month life expectancy. My doctors and I are all surprised that I am still alive. So my goal is to go as long as I can between periods of metastasis to yet other organs. With each successive CT or PET scan, the cancer has always advanced, but some more than at other times.
My last PET/CT scan has shown significant advancement of the disease, and it has spread much further. So I just began a third regimen of Carboplatin and Taxol this past Thursday, October 20th. Nope, I didn’t look forward to it because I’ve been there done that before!
It is already making its ill effects known so I just hope it will result in something positive when I have my CT scan. All the while, I know that chemotherapy has its limits and when the effects of it make one sicker than they would if they were not taking it, it’s time to quit! So my prayer is that I will benefit by this regimen. Even yet, it will only provide a temporary set-back for the cancer itself. Those nodes seem to be working overtime. For all who’ve suffered through and survived chemotherapy regimens, no need to explain all the side effects that can occur. But the cancer, left to itself without treatment, will advance rapidly most often.
Not too long ago I came across a saying worth remembering and taking it to heart. “WORRY IS INTEREST PAID ON A DEBT THAT IS NOT YET DUE!” And so when I find myself absorbed in thoughts of “what if”, the Lord tells me to “get back to where I am today” because only HE knows the answers to all the “what ifs” of our life! So far I’ve not fallen into the self-pity-woe-is-me pit. With His help I’m still living with and above the circumstances.
It is a battle to keep one’s mind in the present day and not attend your own funeral often when you know the big #4 is not going to stay dormant forever. So not living in the land of denial, and not living in the future, when we only have “today” helps. So if I had only one to thank, it would be the Lord because it is He who gifts the surgeons and their teams that practice down here on Planet Earth. I also wonder why we refer to doctors as “practice?” The last one we want is someone that is “practicing” on us! : )
And so I, too, have many to thank, including our wonderful Dr. James D. Luketich at the University of Pittsburgh Medical Center for his pioneering Ivor Lewis Minimally Invasive Surgery. My husband is now into his 14th year of survival with no evidence of disease. (NED). Also, I have Dr. David Bartlett to thank as well at UPMC, because I went there for a 2nd opinion. He performed first exploratory surgery in December of 2012 and then Cytoreductive Surgery (commonly called debulking) on July 1, 2013.
And we can’t stress enough “newbies” having a second opinion and going where the “experienced surgeons” are rather than making “close to home” their first priority. And in the case of both my husband and I, we have the same oncologist, Dr. Paul Conkling, a Duke graduate. He works tirelessly and spends as much time as we need with us at each visit. I just wish some new discoveries would come along that really are a breakthrough. Even the majority of the immunotherapy drugs are still in the “wait-and-see stage”. I wish more of the research companies would pool their efforts. But alas, we have yet to find a cure for the common cold!
Okay, just thought I couldn’t let your posts go by without commenting on them, and congratulating both of you and wish you all the best.
Loretta
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Thank you for sharing your story
my father was originally diagnosed in october 2014. he had chemo/raditation in nov/dec 2014 followed by esephogectomy in March 2015. this month (Oct 2016) they discovered a distant recurrence (one solitary lung met ~1.2 cm). they are planning to do targeted radiation soon and keep monitoring. The doctor sounded optimistic. fingers crossed.
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Sorry to Hear Your Newsinfofordad said:Thank you for sharing your story
my father was originally diagnosed in october 2014. he had chemo/raditation in nov/dec 2014 followed by esephogectomy in March 2015. this month (Oct 2016) they discovered a distant recurrence (one solitary lung met ~1.2 cm). they are planning to do targeted radiation soon and keep monitoring. The doctor sounded optimistic. fingers crossed.
Hello,
I'm sorry to hear your news. Your father's case is a close parallel to mine. I had chemo/radiation followed by an esophagectomy followed by a course of bonus chemo. I had a complete response and tested clean for a couple of years then had a recurrence in my left lung of a single tumor of roughly the same size as your father's. Because the cancer was metastatic, radiation and surgery weren't options for me, so it was chemo only. The fact that your father is being offered radiation is a good sign that they think the spread is controlled and can be treated with a targeted therapy.
Generally, in stage IV, the cancer is considered "on the loose" and targeted therapies are not considered. I even went to Johns Hopkins for a second opinion and was told that the treatment being prescribed by my doctor was in fact the best possible course of action. I was quite dejected that there wasn't a more aggressive course of treatment that was possible for me. Fortunately, I tested HER2+ and herceptin had just recently been approved for stage IV gastric junction cancers. It turned out that I had a great response to my chemo/herceptin combo and have been testing clean for 4 1/2 years after completing chemo. I still get the herceptin weekly (just got more this morning) and am living a pretty good life. I eat and drink whatever I want in whatever quantity I want, which as you doubtless are aware is a really big deal with EC folks. Nothing is the same as it was pre-cancer, but everything is stable and manageable. I just last week reached my pre cancer weight after 8 1/2 yearsof trying, and today I weighed 1 1/2 pounds more than last week.
Beating this thing is possible. Encourage and support your father to be the next one to beat it.
Best Wishes,
Ed
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Thanks for reply
Thanks for the reply Ed. It's great to hear success stories. They are going to do SBRT (Cyber knife) and keep monitoring. He is over 80 years old now and not in the best of health so I think they are going to treat him with the least invasive treatments possible. I was expecting them to say chemo. I have a feeling if he were younger they would be planning more aggressive treatment (chemo). He almost died of a massive blood clot in his lung during the chemo/radiation in 2014 (otherwise he tolerated the chemo/radiation extremely well). BTW he is a prostate cancer survivor and had his leg amputated a couple of years ago due to a life threatening infection (he's not diabetic) and through all this he maintains a postive and hopeful outlook during his fight with EC. He and people like you are an inspiration.
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treatment plan
PET scan showed no other tumors other than the one small met in lung (1.2 cm). treatment plan is 5 treatments with SBRT. Sharing this info in case others are looking for info on distant recurrence.
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Thank You
Ed, I can't tell you how much I needed to read your post. I'm Stage IV and I'm at the 9-11 months mark. Normally when I post on this site I'm sharing my experiences and advice to someone who may be able to use it. I'm in a particularly bad situation as I had lung cancer when I was 34 and underwent a right pnuemonectomy followed by radiation and chemo. Now, 19 years later, the chemo caused Stage C chemo-induced cardiomyopathy and the radiation caused my esophageal cancer. This means that I'm inoperable because of my two previous chest cavity surguries (and of course being Stage IV), and I'm ineligible for radiation because I had 50.4 Gy of radiation for my lung cancer treatment. This leaves me with good ol' FOLFOX which is being administered for PALLIATIVE care...I hate that word! I'm being treated at Johns Hopkins and have oversight from MD Anderson (who have been fantastic) but I now find myself gravitating towards Cancer Treatment Centers of America. I've never been a fan of CTCA but I guess a drowning man will grab on to anything. I really have to find someone who thinks outside of the box and isn't guided solely by the prevailing treatment regimen. Enought babling for now...I just wanted to say that your post lifted my spirits and gives me an inkling of hope...and we all know that the thing that cancer does to us when presented with a 9-11 month life expectancy is steal all hope.
Thank you VERY MUCH for your post.
pat
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Wishing You The Besteclc said:Thank You
Ed, I can't tell you how much I needed to read your post. I'm Stage IV and I'm at the 9-11 months mark. Normally when I post on this site I'm sharing my experiences and advice to someone who may be able to use it. I'm in a particularly bad situation as I had lung cancer when I was 34 and underwent a right pnuemonectomy followed by radiation and chemo. Now, 19 years later, the chemo caused Stage C chemo-induced cardiomyopathy and the radiation caused my esophageal cancer. This means that I'm inoperable because of my two previous chest cavity surguries (and of course being Stage IV), and I'm ineligible for radiation because I had 50.4 Gy of radiation for my lung cancer treatment. This leaves me with good ol' FOLFOX which is being administered for PALLIATIVE care...I hate that word! I'm being treated at Johns Hopkins and have oversight from MD Anderson (who have been fantastic) but I now find myself gravitating towards Cancer Treatment Centers of America. I've never been a fan of CTCA but I guess a drowning man will grab on to anything. I really have to find someone who thinks outside of the box and isn't guided solely by the prevailing treatment regimen. Enought babling for now...I just wanted to say that your post lifted my spirits and gives me an inkling of hope...and we all know that the thing that cancer does to us when presented with a 9-11 month life expectancy is steal all hope.
Thank you VERY MUCH for your post.
pat
Pat,
I remember your post froma little while ago and it seems like you're faced with an absolute horror show. You also seem to have as good an attitude as possible faced with your situation. I was in a "maybe CTCA will come up with something aggressive" state of mind a few years ago too. I eventually settled in with "two world class cancer centers say this is best" and went with their recommendation. It was only piss luck that led to me coming out on the other side of a death sentence, but I'll sure as hell take it. I hope 9-11 months turns out to be a massive underestimate for you like my 7-8 months has turned out for me.
Kick this SOB's ****,
Ed
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Stage IV ECDeathorglory said:Sorry to Hear Your News
Hello,
I'm sorry to hear your news. Your father's case is a close parallel to mine. I had chemo/radiation followed by an esophagectomy followed by a course of bonus chemo. I had a complete response and tested clean for a couple of years then had a recurrence in my left lung of a single tumor of roughly the same size as your father's. Because the cancer was metastatic, radiation and surgery weren't options for me, so it was chemo only. The fact that your father is being offered radiation is a good sign that they think the spread is controlled and can be treated with a targeted therapy.
Generally, in stage IV, the cancer is considered "on the loose" and targeted therapies are not considered. I even went to Johns Hopkins for a second opinion and was told that the treatment being prescribed by my doctor was in fact the best possible course of action. I was quite dejected that there wasn't a more aggressive course of treatment that was possible for me. Fortunately, I tested HER2+ and herceptin had just recently been approved for stage IV gastric junction cancers. It turned out that I had a great response to my chemo/herceptin combo and have been testing clean for 4 1/2 years after completing chemo. I still get the herceptin weekly (just got more this morning) and am living a pretty good life. I eat and drink whatever I want in whatever quantity I want, which as you doubtless are aware is a really big deal with EC folks. Nothing is the same as it was pre-cancer, but everything is stable and manageable. I just last week reached my pre cancer weight after 8 1/2 yearsof trying, and today I weighed 1 1/2 pounds more than last week.
Beating this thing is possible. Encourage and support your father to be the next one to beat it.
Best Wishes,
Ed
This is very inspirational for me Ed. My husband, Jack, was diagnosed with Stage IV EC in June, 2016. They opted against surgery. H started with 10 radiation sessions, then did 6 cycles of FOLFOX. He also came back as HER2 positive and they started giving him Herceptin with the chemo on the last 2 cycles. We just got the results of the CT scan and there is no sign of cancer. This is nothing short of a miracle and we feel blessed beyond our wildest dreams. Of course, now we wonder how long will it last? I have read that Herceptin is very good at "remission", and it sounds like it's working for you.
He just started another 6 cycles of chemo/Herceptin, although the oncologist did lower the chemo dose some. He still has a lot of pain though in the lower GI tract and upper stomach. Will he always have this? Do you still have pain?
Thanks.
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Hello AnaAnaLee said:Stage IV EC
This is very inspirational for me Ed. My husband, Jack, was diagnosed with Stage IV EC in June, 2016. They opted against surgery. H started with 10 radiation sessions, then did 6 cycles of FOLFOX. He also came back as HER2 positive and they started giving him Herceptin with the chemo on the last 2 cycles. We just got the results of the CT scan and there is no sign of cancer. This is nothing short of a miracle and we feel blessed beyond our wildest dreams. Of course, now we wonder how long will it last? I have read that Herceptin is very good at "remission", and it sounds like it's working for you.
He just started another 6 cycles of chemo/Herceptin, although the oncologist did lower the chemo dose some. He still has a lot of pain though in the lower GI tract and upper stomach. Will he always have this? Do you still have pain?
Thanks.
Hello Ana,
Sorry to see you here, but it sounds like you have a success story in the making. It's great to hear that your husband is showing no signs of cancer. For me, I don't know for sure if it's the herceptin that is keeping me in remission. But since my doctor and I also don't know that it isn't responsible for my success, we're not going to mess with it. I get regular echocardiograms to make sure it's not damaging my heart and since it isn't, we keep going. I'm now five years of getting the herceptin weekly, and we have no plans to change things.
I didn't have pain in the lower GI tract or upper stomach. The side effects of chemo hit different people in different ways, so I can't say what your husband can expect. Even if I had a similar experience, it would just be one guy's story. Everybody's journey is individual when you're on this ride.
Wishing you guys continued success,
Ed
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(nearly) not the only one
I haven't been here in ages but thought I'd jump into this thread to add another success story .. 4 and half years since I was told I might have 10 months to get things in order (EC stage IV with spots on liver). 6 months of 3-way heavy dose chemos, followed by 4 years herceptin seems to have done the trick, Have just stopped herceptin ... for past 18 months oncologist believed it had run its course and might damage from now on, and I finally agreed. Lucky to say I have lived life to the full throughout, maybe except for some tough days in the first 6 months. I vaguely remember the decimal-point-percentage stats for survival after five years... I should have bought lottery tickets. Good luck to all .. there is hope!
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Thank you as your post has
Thank you as your post has given me a little glimmer of hope for my husband who was just diagnosed Nov 4th with stage 4 esophageal cancer
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Thank youDeathorglory said:Sorry to Hear Your News
Hello,
I'm sorry to hear your news. Your father's case is a close parallel to mine. I had chemo/radiation followed by an esophagectomy followed by a course of bonus chemo. I had a complete response and tested clean for a couple of years then had a recurrence in my left lung of a single tumor of roughly the same size as your father's. Because the cancer was metastatic, radiation and surgery weren't options for me, so it was chemo only. The fact that your father is being offered radiation is a good sign that they think the spread is controlled and can be treated with a targeted therapy.
Generally, in stage IV, the cancer is considered "on the loose" and targeted therapies are not considered. I even went to Johns Hopkins for a second opinion and was told that the treatment being prescribed by my doctor was in fact the best possible course of action. I was quite dejected that there wasn't a more aggressive course of treatment that was possible for me. Fortunately, I tested HER2+ and herceptin had just recently been approved for stage IV gastric junction cancers. It turned out that I had a great response to my chemo/herceptin combo and have been testing clean for 4 1/2 years after completing chemo. I still get the herceptin weekly (just got more this morning) and am living a pretty good life. I eat and drink whatever I want in whatever quantity I want, which as you doubtless are aware is a really big deal with EC folks. Nothing is the same as it was pre-cancer, but everything is stable and manageable. I just last week reached my pre cancer weight after 8 1/2 yearsof trying, and today I weighed 1 1/2 pounds more than last week.
Beating this thing is possible. Encourage and support your father to be the next one to beat it.
Best Wishes,
Ed
Ed, I just read your post - my husband also tested positive for HER2 and is receiving herceptin also at this time along with his other chemo and radiation. He is not a surgical candidate as he has a metastatic lesion in his shoulder and 3 spots on his liver (though too small to be seen with PET scan - only found when feeding tube placed). We are finishing round 6 of chemo next Monday and will be completed with radiation also so I am taking him to MD Anderson to see if there are any other options for us other than only expecting him to make it another 2-3 months. After having just lost my dad to renal cell cancer a few years ago, I am absolutely falling apart with the thought of losing the love of my life now.
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I am new to this site, but Ieclc said:Thank You
Ed, I can't tell you how much I needed to read your post. I'm Stage IV and I'm at the 9-11 months mark. Normally when I post on this site I'm sharing my experiences and advice to someone who may be able to use it. I'm in a particularly bad situation as I had lung cancer when I was 34 and underwent a right pnuemonectomy followed by radiation and chemo. Now, 19 years later, the chemo caused Stage C chemo-induced cardiomyopathy and the radiation caused my esophageal cancer. This means that I'm inoperable because of my two previous chest cavity surguries (and of course being Stage IV), and I'm ineligible for radiation because I had 50.4 Gy of radiation for my lung cancer treatment. This leaves me with good ol' FOLFOX which is being administered for PALLIATIVE care...I hate that word! I'm being treated at Johns Hopkins and have oversight from MD Anderson (who have been fantastic) but I now find myself gravitating towards Cancer Treatment Centers of America. I've never been a fan of CTCA but I guess a drowning man will grab on to anything. I really have to find someone who thinks outside of the box and isn't guided solely by the prevailing treatment regimen. Enought babling for now...I just wanted to say that your post lifted my spirits and gives me an inkling of hope...and we all know that the thing that cancer does to us when presented with a 9-11 month life expectancy is steal all hope.
Thank you VERY MUCH for your post.
pat
I am new to this site, but I encourage you to look at natural medicine that will help your own body fight the cancer in addition to the standard medical treatment. I am also a nurse and my husband now has stage 4 EC, but I am telling you that what I have been giving him to help his own body fight this battle has been working, including bringing up his white count, platelets and stabilizing HGB in the middle of intense chemo and radiation. I know CTCA uses this approach as part of the entire 'healing' process so please start looking into it - considerations such as juice plus and organic tumeric and even frankencinse oil ...... Please read up and don't give up - my husband is not quite on board with my thoughts at this time, but I am telling you that I have seen it work ... I wish you the very best and will be praying for you (even if you do not believe in prayer!)
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Hello GeorgiaGeorgia0701 said:Thank you
Ed, I just read your post - my husband also tested positive for HER2 and is receiving herceptin also at this time along with his other chemo and radiation. He is not a surgical candidate as he has a metastatic lesion in his shoulder and 3 spots on his liver (though too small to be seen with PET scan - only found when feeding tube placed). We are finishing round 6 of chemo next Monday and will be completed with radiation also so I am taking him to MD Anderson to see if there are any other options for us other than only expecting him to make it another 2-3 months. After having just lost my dad to renal cell cancer a few years ago, I am absolutely falling apart with the thought of losing the love of my life now.
Hello Georgia,
Herceptin can be a very powerful ally in your fight against EC. Even stage IV. That's exactly why I'm still alive. MD Andenson is an excellent center. I'd say you are doing right by your husband taking him there. Hopefully, they can come up with a workable plan for him there.
I know how much my wife struggled when I was diagnosed as terminal five years ago, and I feel bad for you as well. It's a particularly awful hell that the caregivers are forced to deal with. Please stay strong for your husband. I'm sure he needs it now.
Wishing you guys all the best,
Ed
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New to site...dad fighting Stage 4 EC
Hello everyone. My name is Michelle....my dad was diagnosed back in Sept 2015 with Stage 4 EC. Surgery not an option. He went thru one round of chemo...taxotear, his cancer went into remission for a few months then returned. He did another round of chemo. Diff type. Oxyplatin? Something like that. That didnt do anything. He stopped all chemo in Dec...just before Christmas. His last scan in Nov showed some spreading...hes not had any chemo in like 2 months. That scan he had was recent...just about a week ago...some larger spots but not rapid spreading...He has had some spreading to his liver, stomach and lungs. Hes getting ready to begin his 3rd chemo treatment. Tomorrow. Cyramza. Fingers crossed. Im worried becuase he has recently had bronchitis....and that has wore him down a bit. He was on 2 different types of antibiotic and a sterriod. He is finally coming around a little bit from that but he was having trouble breathing when he walks. This isnt normal for him. I had to light a fire up his drs butt to get my dad seen again, and his oxygen is fine, they found when he walked a few steps his heart rate would sky rocket. They called his heart dr and he upped his meds, but, my concern is the Cyramza can raise the blood pressure. And hes already having issues getting it to stablize. And, lately hes been extremely tired and sounds like hes drugged when i talk to him. More than normal. Im not sure what thats from...We are getting him some cannabis oil to try. Ive been reading up on it as much as I can...we are willing to try anything to even get another year of a decent quality of life from him...but obviously praying for more. Reading all the stories on here, my head is swimming. My dad is in his early 70's , and he has lived a hard life. Hes currently addicted to Norcos because of back surgery. Hoping the cannabis will help him get off some of that as Im aware that all of the crap hes had to pump in his body has to be taking a toll on his immune system. I wanted to discuss some immune boosting therapies with his oncologist but...his oncologist said there isnt any scientific evidence that anything like that will work. We got a second opinion from an oncologist at the University of Michigan. She stated that the chemo his oncologist was planning to use would be a good plan. So....thats what were going to do...but...I need help trying to figure out a way to help build up my dads immune system. To help him handle that crap chemo better. My dad is old skool...he does whatever his drs tell him....Im the one who asks the tough questions and seeks 2nd opinions . Im the one who got him into U of M. My dad listens to me ...and wants to look into the things I find out, but...hes also feeling very over whelmed and confused . He can only take so much at one time. I try to take things slow with him. Hence...the cannabis oil. Hes getting to the point where hes willing to try anything. But we have no experience with it and Im concerned about interactions with his heart meds and norcos. If anyone has any advice, Im all ears. Thank you !!
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God Your Deal Sounds AwfulJade48 said:New to site...dad fighting Stage 4 EC
Hello everyone. My name is Michelle....my dad was diagnosed back in Sept 2015 with Stage 4 EC. Surgery not an option. He went thru one round of chemo...taxotear, his cancer went into remission for a few months then returned. He did another round of chemo. Diff type. Oxyplatin? Something like that. That didnt do anything. He stopped all chemo in Dec...just before Christmas. His last scan in Nov showed some spreading...hes not had any chemo in like 2 months. That scan he had was recent...just about a week ago...some larger spots but not rapid spreading...He has had some spreading to his liver, stomach and lungs. Hes getting ready to begin his 3rd chemo treatment. Tomorrow. Cyramza. Fingers crossed. Im worried becuase he has recently had bronchitis....and that has wore him down a bit. He was on 2 different types of antibiotic and a sterriod. He is finally coming around a little bit from that but he was having trouble breathing when he walks. This isnt normal for him. I had to light a fire up his drs butt to get my dad seen again, and his oxygen is fine, they found when he walked a few steps his heart rate would sky rocket. They called his heart dr and he upped his meds, but, my concern is the Cyramza can raise the blood pressure. And hes already having issues getting it to stablize. And, lately hes been extremely tired and sounds like hes drugged when i talk to him. More than normal. Im not sure what thats from...We are getting him some cannabis oil to try. Ive been reading up on it as much as I can...we are willing to try anything to even get another year of a decent quality of life from him...but obviously praying for more. Reading all the stories on here, my head is swimming. My dad is in his early 70's , and he has lived a hard life. Hes currently addicted to Norcos because of back surgery. Hoping the cannabis will help him get off some of that as Im aware that all of the crap hes had to pump in his body has to be taking a toll on his immune system. I wanted to discuss some immune boosting therapies with his oncologist but...his oncologist said there isnt any scientific evidence that anything like that will work. We got a second opinion from an oncologist at the University of Michigan. She stated that the chemo his oncologist was planning to use would be a good plan. So....thats what were going to do...but...I need help trying to figure out a way to help build up my dads immune system. To help him handle that crap chemo better. My dad is old skool...he does whatever his drs tell him....Im the one who asks the tough questions and seeks 2nd opinions . Im the one who got him into U of M. My dad listens to me ...and wants to look into the things I find out, but...hes also feeling very over whelmed and confused . He can only take so much at one time. I try to take things slow with him. Hence...the cannabis oil. Hes getting to the point where hes willing to try anything. But we have no experience with it and Im concerned about interactions with his heart meds and norcos. If anyone has any advice, Im all ears. Thank you !!
Hello,
What you are facing sounds horrible. I hope you are able to find some treatment that works as far as what you are looking for. EC is a horrible SOB that doesn't care much about folk's wishes, though.
I hope for the best for you,
Ed
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It sounds like your Dad has quite a battle on his hands
It sounds like your Dad has had a couple of the standard chemotherapy protocols for esophageal cancer. I am a bit surprised they did not do more than one round of the Taxotere if it was having a positive impact on his cancer. I assume they have tested your Dad’s tumor biopsies for HER2 overexpression although if he has cardiac issues Herceptin may not be an option.
I would be slightly hesitant to go into an additional round of chemotherapy with an active respiratory infection. I would certainly make sure you or he mentions it to his chemotherapy nurse prior to his infusion.
I am sure if you discuss cannabis oil with his oncologist you will get the usual “no medical evidence that it is effective” answer. On the other hand it sounds like your Dad may be in a place where quality of life is becoming a more important issue than quantity of life. I have no personal knowledge of cannabis oil effectiveness, but several folks have posted here that it is helpful in managing pain, anxiety, nausea, and appetite. As far as supporting your Dad’s immune system, getting adequate nutrition and hydration are always a challenge with cancer treatment. I have found that making smoothies with various fruits and vegetables augmented with protein powder is a good way to help maintain calorie levels when eating becomes difficult.
Your Dad is fortunate to have you as an advocate. Sometimes the combination of multiple drugs to treat individual issues can, in combination, cause some of the lethargy and confusion your Dad is experiencing. Hopefully you have an internist that is aware of all the medications your Dad is taking and is evaluating them for possible interactions.
Wishing you and your Dad the best possible outcomes.
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
Six Year Survivor0 -
Hi GeorgiaGeorgia0701 said:I am new to this site, but I
I am new to this site, but I encourage you to look at natural medicine that will help your own body fight the cancer in addition to the standard medical treatment. I am also a nurse and my husband now has stage 4 EC, but I am telling you that what I have been giving him to help his own body fight this battle has been working, including bringing up his white count, platelets and stabilizing HGB in the middle of intense chemo and radiation. I know CTCA uses this approach as part of the entire 'healing' process so please start looking into it - considerations such as juice plus and organic tumeric and even frankencinse oil ...... Please read up and don't give up - my husband is not quite on board with my thoughts at this time, but I am telling you that I have seen it work ... I wish you the very best and will be praying for you (even if you do not believe in prayer!)
Can I ask what types of things youve been using as far as natural therapies? My dad is stage 4 EC....hes taking so many different things that everytime I try to get him on anything natural hes not thrilled. Hes always worried it will somehow interact with things hes already taking..in a bad way.
Im seeing a digestion Dr myself...shes got me taking natural food enzymes. I told her about my dad and she did mention 2 things for him to take to help clean his liver and kidneys...I bought them and brought them to him....they have not been opened.
He is however taking a Vitamin C powder and amino acids that I got for him. I was just curious what you have tried.Thank u!
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I am a hopeful but terrified realist
Just found out this week that my beloved dad has stage 3 esophageal adenocarcinoma - awaiting PET/CAT scans to see where/how far it's spread. We see the specialist this Friday. Can't tell you what a huge relief it is to see survivors in here, despite being an utter realist and fully aware of the viciousness of this cancer, I have to admit I wept with joy at your stories. Dad is prepared for a fight (I am so very grateful for the Aussie health system!!), but it's going to be a big one - it's so comforting to know there's others out there who've come out victorious. Thank you all for sharing xxx
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