FolFox Chemo Treat

 Hello again Angela,

 I just sent you a private message, as well as a short (for me) note on line here.  Now I see another entry.  Now I feel I have to answer you in much more detail.  So now I will have to “retract reference to a short note only”.  I think it is urgent that you be a “fast learner.”

 First, I am questioning why there is no radiation scheduled at this time?  Clinical trials indicate that patients who have TRI-modal treatments fare best. That includes most often pre-op chemo and radiation, (neo-adjuvant) followed by surgery if the patient qualifies for surgery.  Actually chemo circulates throughout the entire body in search of cancerous cells.  But it will also wipe out some good cells along the way, that will cause side effects, but a loss of hair for instance, is not to be compared to the killing of tumor cells.  The hair will come back.  But to be honest, I’ve not corresponded with anyone that had FOLFOX treatments and had NO side effects.  Your husband will no doubt experience more than hair loss. But in the references provided below, you will find that for each chemo listed, there will be “percentages” of people who will most likely encounter certain side effects.  There will also be helps to counteract those side effects.  My husband had side effects but they were mild by comparison to others that I know of who have written here.  And yes, they will vary from person to person, but if I were you, I would count on experiencing some, especially with Oxaliplatin!  I really don’t want to scare you even more, but you won’t like reading this, but isn’t the “Boy Scout motto” BE PREPARED? 

 Actually the HER2 positive “onco gene” is one that is "over-expressive" and causes the cancer to spread even more rapidly than those who do NOT have this problem.  However, HERCEPTIN is the drug that targets that particular cell and inhibits its rapid spread.  See a longer explanation below my signature.  Actually originally it was thought that only Breast Cancer patients had this particular over-expressive onco gene, then later it was discovered that many gastric cancer patients that includes Esophageal Cancer patients were also testing positive for HER2.  (HER2 (human epidermal growth factor receptor 2)

 RADIATION is prescribed to shrink the actual tumor itself.  So the USUAL treatment prescribed for a patient who has a tumor that is located at the GE junction and is 4.3 inches in size includes both pre-op chemo and radiation simultaneously.   So I seriously question why no radiation is prescribed, and I highly suggest you get a SECOND opinion very soon.  Remember that I am not prescribing treatments but only giving you my personal opinion based on relative research, and asking questions which naturally come to mind.  I’ve been corresponding with Esophageal Cancer patients since 2003 and by this time have come to understand quite a bit about the different types of surgery, and how different patients qualify for different kinds of treatments and/or surgery.  And the goal is to be a “surgical candidate”.  My husband was told that even if the Pre-op treatment (neo-adjuvant) treatments completely wiped out all traces of the cancer, that SURGERY WAS STILL A MUST.  They explained that sometimes the cancer is not picked up by the scans, but will show up during the surgical procedure.  So we knew from the start that surgery would follow the pre-op treatment.  And that is not unusual to find more cancer during the surgery than was previously indicated by scans. 

 Guess I’ve told you enough to keep you awake all night now.  I really didn’t intend to write this much at this wee hour of the morning, but when I saw your other post regarding the chemo names, I felt you needed to know more now.  So please try not to be frightened out of your wits, because you’ve got to be able to think clearly to successfully weather this storm.  And it can be done!  I was once where you find yourself now, very fearful because of a lack of knowledge about this cancer that I had never heard of before.  But now I’m speaking from “hindsight” and I hope you will know that what I say is meant for your good.  I sure hope so.

 So since you’ve written, I’m taking the opportunity to be very honest.  So if I were you, I would say “prepare for some side effects and hope for the best.  And another thing I know is that few doctors and/or nurses will rarely tell you more than you know to ASK.  So you must quickly get up to speed on questions to ask.  And believe me, at the very first you simply do NOT know what questions to ask!  That’s understandable.

 Wishing you and your husband a complete success even though the journey is difficult!

 Loretta (William’s wife) His diagnosis, Adenocarcinoma @ the GE Junction, EC Stage III (T3N1M0) – completely successful Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY@ THE University of Pittsburgh Medical Center by Dr. James D. Luketich on May 17, 2003! 

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This site contains a “wealth of information” relative to Esophageal Cancer.  Note the side bar that includes among other topics, QUESTIONS TO ASK. 

 1.  http://www.cancer.net/cancer-types/esophageal-cancer/treatment-options

 “ …For adenocarcinoma, the most common treatment in the United States is chemotherapy and radiation therapy followed by surgery. Surgery is almost always recommended after chemoradiotherapy, unless there are factors that increase the risks from surgery, such as a patient’s age or overall health.

 For advanced esophageal cancer, treatment usually involves chemotherapy and radiation therapy…”

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2.  http://www.cancer.net/cancer-types/esophageal-cancer/questions-ask-doctor

 Esophageal Cancer: Questions to Ask the Doctor

 Approved by the Cancer.Net Editorial Board, 10/2015

 “ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

 Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care…”

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  Angela, the nurse navigator is being very nice, but FOLFOX is a potent chemo combo and all that I’ve corresponded with did have side effects.  I highly recommend this link for valuable chemotherapy information.  Here is the homepage address: 3.  http://www.chemocare.com/

 FOLFOX is an acronym for 3 different types of chemo.

   4.  http://chemocare.com/chemotherapy/drug-info/fluorouracil.aspx

5-Flourouracil –

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   5.  http://www.chemocare.com/chemotherapy/drug-info/leucovorin.aspx

Leucovorin -

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  6.   http://www.chemocare.com/chemotherapy/drug-info/oxaliplatin.aspx

Oxaliplatin -

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Angela, Since I am a Stage IV Peritoneal Carcinomatosis/Ovarian Cancer patient myself, I have undergone two separate chemotherapy sessions, plus surgery.  These are some things I found helped me through those treatments.  You can read about them in my letter to “mister_eko” here.

 7.  http://csn.cancer.org/comment/1548793#comment-1548793

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Here is some excellent information relative to the use of HERCEPTIN which is not a chemo drug but is administered along with the chemo combo that is prescribed.  Link below shows FDA approved Herceptin for use in gastric cancers in 2010.

8.  http://www.roche.com/media/store/releases/med-cor-2010-10-21.htm

“FDA approves Herceptin for HER2-positive metastatic stomach cancer

 First targeted medicine shown to improve overall survival in HER2-positive stomach and gastroesophageal junction cancers

 Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced the U.S. Food and Drug Administration (FDA) has approved Herceptin (trastuzumab) in combination with chemotherapy (cisplatin plus either capecitabine or 5-fluorouracil [5-FU]) for HER2-positive metastatic cancer of the stomach or gastroesophageal junction, in men and women who have not received prior medicines for their metastatic disease.

 People diagnosed with metastatic stomach cancer should have the HER2 status of their tumors determined, as only patients with HER2-positive disease are eligible for treatment with Herceptin plus chemotherapy…

  Herceptin is a humanized antibody, designed to target and block the function of HER2, a protein produced by a specific gene with cancer-causing potential. The mode of action of Herceptin is unique in that it activates the body’s immune system and suppresses HER2 to target and destroy the tumor…”

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 9.  http://www.cancernet.co.uk/herceptin.htm

 “Your doctor has recommended a medication called Herceptin as treatment for your breast cancer. This information sheet provides a brief introduction to Herceptin and explains the common side effects you may experience. This does not mean you will definitely get them. It is also possible you may experience a side effect not mentioned here.

 What is Herceptin? It is not chemotherapy or a hormone therapy.  It is called a monoclonal antibody which utilises the natural immune system to kill tumour cells. Although cancers grow mainly beyond normal growth control, they are sufficiently similar to the own body’s cells to enable them to hide from the immune system (the body’s defence mechanism against “foreign” attack).

 There are, however, some subtle differences between cancer cells and normal cells. Some of these differences may be detected with special sensitive laboratory tests. In the case of breast cancer there may be too many copies of a cancer-causing gene called an oncogene. This oncogene called HER2 is part of a family of genes called c-erbB-2 (otherwise known as her-2/neu).

 Each HER2 gene results in the expression of a receptor on the surface of the cell. If the gene makes too much receptor, it is referred to as being "over expressed".  Cells that over express too much of the HER2 gene can be a specific target for therapies such as Herceptin. Technology now exists to make antibodies in the laboratory called monoclonal antibodies. Specific antibodies have been made to detect and attach to the HER2 receptors. The antibody is therefore known as anti-HER2 called trastuzumab or its commercial name Herceptin.

How does Herceptin work? Herceptin works in a different way than standard cancer therapy, such as chemotherapy or hormone therapies. Herceptin® (Trastuzumab) is believed to function in three main ways:

 1) Blocking tumour cell growth: Herceptin binds to the HER2 (receptors) on the tumour cell surface and this stops the receptor signalling the  cell to grow and divide.

 2) Signalling of the immune system:  Certain immune system cells, called natural killer (NK) cells, attach to Herceptin when it is bound to the tumour cells. The NK cells then detect an abnormality, and kill the tumour cell.

 3) Working with chemotherapy:  Herceptin and chemotherapy work in different ways, but when given together, the two drugs can form a partnership (synergy) so kill tumour cells more effectively than either Herceptin or chemotherapy when given alone…”

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             I’m wondering where your husband is being treated and who are his doctors?  Why are "they" waiting 3 months to “re-evaluate” your husband for this sizeable tumor?  My husband’s treatment prior to surgery, which was a MUST, was much shorter in duration! 

 Please read my reply to “mister_eko” here. 

10.  http://csn.cancer.org/comment/1548791#comment-1548791

 You will note that I gave my husband’s treatment schedule as follows:

  William’s treatment schedule was as follows:  (Started Feb. 10 & completed March 17, 2003.)

  ·       Week 1 ~ (02-10-03) Chemo 96-hr. continual infusion of Carboplatin/5-FU (via Fanny pack)

  ·       Weeks 2, 3, and 4 ~ (02-17-03) Five days-a-week radiation treatment.  (No CyberKnife equipment (targeted radiation) in this area in 2003, but now we do have one in our Tidewater area.)

  ·       Week 5  ~ Combination radiation plus SECOND chemo continuous 96-hr. infusion (via Fanny pack)

  ·       Week 6 ~ (03-17-03) Final week of radiation.

   ·       Repeat PET Scan on 04-28-03 ~ results - COMPLETE ERADICATION OF TUMOR in Esophagus and the 2 affected lymph nodes.

           Laparoscopic surgery was scheduled for May 17, 2003 at the University of Pittsburgh Medical Center (UPMC) by the pioneer of the Ivor Lewis Minimally Invasive Esophagectomy (MIE) Dr. James D. Luketich, approximately 3 weeks later after successful pre-op treatment.  Radiation does cause scar tissue, so the sooner the surgery after the pre-op treatments—the better.

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AngelaMarsh said:

Thank you Ed and Loretta. 

Thank you Ed and Loretta.  Because of you both I texted the oncologist and pushed to get info - the port will be put in place on Monday as planned but we go to Cornell Weill in NYC to see the EC specialist Tuesday.  The EC specialist agrees with our oncologist's planned treatment.  I'm waiting for a full explanation - the oncologist will call once he finishes seeing patients.  Thank you again.

Hi Angela ~

It would help if you gave us the names of the doctors who are specifically prescribing the treatment for your husband.  I'm still waiting for the exact diagnosis.  I'm also researching the reputation of the hospitals you name.  Esophageal Cancer patients should be being treated at a major cancer hospital where Esophageal Cancer is one of their TOP specialties. "All thoracic surgeons" are not EQUAL, and all hospitals are NOT EQUAL.  You're a part of our "EC family" and like the Hallmark card motto says, "WHEN YOU CARE ENOUGH TO SEND THE VERY BEST!"   Angela, we care and we want you to be seen only by the VERY BEST!

Love & prayers for you and your husband,

Loretta

I am just reading through this thread. Angela, you landed in the right place when you came here. Not only that, you are touching base with folks who are a wealth of information.

My brother was diagnosed with stage 3 and I'm back for more information !

I'll be following this thread and others.

AngelaMarsh said:

Hi Ed,

Hi Ed,

It's been a while I know but I was wondering if you could respond to a couple of questions.

My husband has completed 3 of 6 rounds of folfox and herceptin.  He has been able to work and commutes to New York City daily with the exception of the 1/2 day he's being treated at the hospital and the 2.5 days he's wearing his fanny pack (he works from home those 3 days).  His side effects to date have been minimal. However he is developing diarrhea and takes imodium which quiets it.  He also has a gurgly stomach which keeps him up at night because he finds it bothersome so he's relatively cranky and quite tired some mornings but still goes to work.  Today he got sick to his stomach after drinking a smoothie I made for him but he says he feels 100% better and no longer has gurgles in his stomach - he actually sounded terrific when I talked with him from his NYC office. He does get neuropathy but apparently it disappears a few days after treatment.  

May I ask what your side effects were and if you were hoarse at all - hubby gets hoarse on occasion which I think is a sign of a tumor which we already know he has of course.

I find I hate the unknown.  I would very much like to know what to expect.  I actually left this site because of the sadness here.  But I thought I'd reach out to you just one more time to find out your side effects and maybe figure out what to expect with our situation even though I know everyone is different.  My husband is a sweetheart and is very annoyed with this entire situation and is pushing through it. 

Thanks for anything you would like to share.

Angela 

Hello Again Angela,

I'm glad to hear your husband is coping well with the folfox and herceptin.  My course of treatment was different than your husband's so my journey  won't be an exact parallel, but I'm happy to offer my experience.  I had 12 rounds of folfox (every 2 weeks) and 24 rounds of herceptin (every week).  So that was a nearly six month long ride.  I'm also still getting the herceptin weekly.  October will make five years of the weekly herceptin.  

I didn't get a gurgling stomach or hoarseness from the folfox/herceptin.  I did get hoarse my 1st time around (not folfox or herceptin) when I also had the 5-FU fanny pack, but I think that the hoarseness was from the radiation frying my esophagus shut and not the chemo.  I didn't have any problems working with the fanny pack other than some funny looks, which I didn't care about.  I even had to regularly go through security into a courthouse for court hearings.  Once folks knew what it was, no one ever said anything and I even got a free pass by the courthouse security folks. 

I didn't get sick to my stomach or nausea because my oncologist was super on top of potential side effects like that and I had several preventative medications for that.  One side effect that I did get pretty bad was cold sensitivity, so while the smoothie wouldn't have made me sick, it would have caused intense pain.  My hands and feet were sesitive to the cold, but it was my mouth and throat that were a hundred times worse.  The way I'd describe it was as if my mouth and throat were frozen solid and then someone hit it with a hammer and shattered it.  That was the oxaliplatin.  I'm, um, a little stubborn, so I still had cold drinks.  It caused me large amounts of avoidable pain, but it made me feel like I was still in charge of my life, so I did it.  

I also had the neuropathy (again, the oxaliplatin).  The first 11 rounds of folfox it wore off before my next dose, but the 12th round saw the neuropathy become permanent.  I still have decreased feeling in my hands and feet.  I also had/have diarrhea.  I think that might be related to the herceptin because it has kept up even years after stopping the folfox.  It ranged from VERY bad while on the folfox to something fairly easily managed (now).  My doctor has prescribed lomotil (pills) and sandostatin (bi-weekly injection) to help me manage.

Some other things I had as side effects were changes in the way food tasted.  I became very sensitive to spicy foods and couldn't eat them.  Also there were some things that just didn't taste good, but were still edible.  That was the folfox, because it stopped and hasn't occurred with just the herceptin.  I also began getting nosebleeds.  I'd guess that was herceptin because they continued long after the folfox.  I also became extremely weak towards the end of the folfox.  Several times I fell over but retained consciousness and twice I just passed out on my feet (low blood pressure was the culprit).  Once I split my forehead open and had a Harry Potter mark there.  My doctor was concerned and had me get a ct scan of the head/brain because the brain is one of the favorite spots for EC to metasasize to.  But I made it through all 12 rounds and I'm convinced that making it through the entire course is what killed the cancer.  

Another side effect I've been hit with is something called chemo brain.  The way I describe it is, "do you remember those 'this is your brain, this is your brain on drugs' commercials?  Well, it turns out that sometimes drugs can fry your brain and you don't even get to get high in the process."  I've been on four chemo regimens over eight years, so I'm not sure which drugs are responsible for what percentage of my IQ drop, but I know I'm nowhere near as sharp as I used to be.

Hope this helps and I hope your husband continues to avoid serious side effects,

Ed 

Hi All,  What a blessing this site is- I'm so happy to have found it!!  I have been caring for my brother since he was diagnosed with stage IV EC, mets to liver, on 12-2-16 (initial EC diagnosis was 11-17-16, but only chest CT so unsure if mets were present at that time).  After reading much of the thread, I don't see anyone mentioning having a stent placed, wondering if anyone has had this procedure?  My brother was unable to eat any food, with difficulty getting much fluid in, so a stent was placed prior to starting any treatment.  With the stent, he is to eat only mashed potato consistency food....which poses a challenge to get a variety of food/nutrition in him.  I must also add that he is schizophrenic (mentally stable, although on heavy duty antipsychotic), so, while he can tell you that he can't eat certain foods, he still wants and occasionally requests them.  He had 3 rounds of FOLFOX, then a CT which showed progression in the liver, so now waiting to start different chemo of taxol and cyramza; also waiting to see if his tissue is HER-2 positive to possibly be eligible for clinical trial.  Has anyone had the taxol/ cyramza?  The last 3 days he seems a little confused and needs some assistance with getting dressed/undressed; I know he's weak from the weight loss (35+lbs), but  I have to wonder if he may have mets to the brain?  We are in a frustrating situation as PET scan won't be covered with mets already known from CT scan (insurance will deny due to treatment would only be chemo).  Thank you for any info. you'd like to share. 

AngelaMarsh said:

Update on Hubby

It seems as though it's been forever since I've been to this site.  I hope people are well (Ed? Loretta?).  We got through a hospitalization where hubby ended up with afib and had to be "paddled" to get his heart back in rythm; he also had a bleeding ulcer all of which I blame on the FOLFOX treatments. We got through Thanksgiving with him being able to eat/swallow everything (no wine/alcohol), Christmas was good and New Year we both had a GI tract problem but got through that also.  He's holding his own and the tumor which had been 12.1 centimeters when first diagnosed in August of 2016 is 3.5 at the last PET scan with no sign of cancer elsewhere - initially he had cancer in 4 nodes, 2 near his neck and 2 near his stomach.  He is no longer taking oxaliplatin but is still on a 5FU regimen which includes the herceptin.  We've planned a trip for the end of February and when we return he will have another PET scan.  I have to admit I'm scared.  I wish everyone the best and I will return hopefully with even better news (fingers crossed!).  I send love and hope to hear good news from you also... Angela

Hello Angela,

It's good to hear from you.  Sounds like you're on a rough ride, but are still getting good results with the cancer.  Cardiac problems are a known side effect of Herceptin.  I don't know that that was your husband's problem, but I've been getting echocardiograms every three months for over five years, since I've been on Herceptin, to monitor my cardiac functioning.  

I'm glad that you guys are up to travelling.  Enjoy life now!!

I've been doing pretty well.  I just reached five years since the stage IV recurrence a couple of months ago, and I'm still testing clean.  Nothing is perfect, a lot of things aren't the way they used to be, but everything is stable and manageable, so I'll take it with no complaints.

Enjoy your trip,

Ed