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FolFox Chemo Treat

AngelaMarsh
Posts: 19
Joined: Aug 2016

My husband was just diagnosed with esophageal cancer.  He has an 11 centimeter tumor at the base of his esophagus.  Some lymh nodes are involved but no organs.  Today we learned he should start FolFox chemo treatments next week - 2 days of chemo every other week.  He may also have the Her2 protein which the oncologist indicated was positive becasue there is a drug which targets this protein and can reduce the size of the tumor.  At this point no radiation or surgery is involved.  They want to start chemo and re-evaluate after a 3 month period.  My husband wants to work - our "nurse navigator" indicated she had a patient who had no side effects but everyone is different.  I've been reading how horrible the side effects can be.  I want to be able to help him so I suppose I'm writing to find out how I can - would anyone share?

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 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! 

__________________________________________________________

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…”

 _______________________________________________________________________

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…”

 _________________________________________________________________

  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

__________________________________________________

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

Leucovorin -

__________________________________________________

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

Oxaliplatin -

____________________________________________________

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

_____________________________________________________

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…”

 ______________________________________________________________

 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…”

_______________________________________________________

             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.

____________________________________End of references_______________________

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello Angela,

I've had two occurences of EC and four different chemo regimens.  My 2nd time with EC was a recurrence that had metasasized to a lung.  That was when I had folfox.  I also tested HER2+ and did herceptin with the folfox, although on a diferent schedule than your husband's seems to be (mine was for weekly herceptin and folfox biweekly).  I was very fortunate, because herceptin had just been approved for gastric junction cancers a couple of months before I was diagnosed.  My initial prognosis was that I'd have roughly 7-8 months, and I was told to get my affairs in order sooner rather than later.  I'm a couple of months short of five years at this point and am still testing clean.  Folfox and herceptin is a powerful combination, that can hopefully offer your husband the same results it gave me.

My 2nd time didn't offer me the option of radiation or surgery, because the cancer had spread, but I don't see from your post that that is your husband's situation.  My 1st time I was stage III, which seems to be your husband's case, and I did chemo with radiation, then surgery then more chemo.   EC is a particularly nasty disease and a forceful/aggressive approach is desired if the patient can withstand it.  If your husband is medically compromised that may explain the chemo only approach, but if he's not, I'd consider looking for a second opinion.  A good rule to follow is that this is not a minor thing that can be handled by your local hospital.  This is serious busines and should be handled by folks who deal with EC for a living.

As far as the chemo goes, herceptin is fairly mild and can be tolerated by most folks without much fuss.  Folfox is a different beast completely.  I was prescribed 12 rounds of folfox and told that almost everyone stops after 8 or 9 rounds due to side effects.  I made it through all 12 but everyone who saw me was convinced I was dying and soon by the end.  Turns out it was just the side effects of a cocktail that was working perfectly.  The oxaliplatin, especially, was brutal.  There were a number of side effects that were pretty bad, but it got rid of the cancer and I would do it again if I had to.  I kept my hair but would gladly have lost it if it meant no neuropathy.

Wishing you guys the best,

Ed

AngelaMarsh
Posts: 19
Joined: Aug 2016

Thank you so much for your information Ed.  I'm happy to hear you're doing well and am hopeful my husband will have a similar outcome. 

My husband is being treated at a local hospital which is affiliated with Yale-New Haven Hospital in New Haven, CT and Columbia Presbyterian-Cornell Weill in New York City.  An EC specialist at Cornell Weill has been contacted to work in conjunction with our oncologist. 

Re the folfox - I was fearful it was not an easy cocktail.  My husband commutes to New York City for work and is hoping he can continue to do so.  Our "nurse navigator" said she's had patients that have run the gamut - some can continue working, coaching little league, etc. and others have difficulty.   She also indicated the most common complaint is cold hands and feet and neuropathy which gets progressively worse with more and more treatments.  

Her2 has not been definitively diagnosed as of yet.  We thought we would hear last night but the oncologist said the results have not returned.  If I remember correctly my husband will follow the same protocol as you did should he be Her2+ -- 2 days of chemo every other week for 3 months (6 rounds) and a weekly dose of herceptin should he be Her2+.   After the 6th round of folfox therapy he will be scanned again.  I believe at that time he will have radiation therapy and possibly surgery.  Loretta commented that a scan should be done sooner than 3 months -- would you mind sharing your views/experience regarding this?

The relatively good news is he is able to eat certain foods like poached salmon, mashed potatoes, green beans, scrambled eggs, pancakes, even a tuna sandwich on sourdough bread or turkey sandwich on white.  He's mystified why he can't get things like lemon sole down or sweet potatoe - he has an immediate acid reflux reaction.  Steak and chicken are completely out of the question.  We will be seeing a nutritionist Tuesday which is his first chemo treatment - they implant a port on Monday.

Being able to correspond with people who have gone through this horrible experience is a godsend and I thank you very much for your input - Loretta too if she's reading this. 

Thank you,

Angela

AngelaMarsh
Posts: 19
Joined: Aug 2016

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 

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

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 

AngelaMarsh
Posts: 19
Joined: Aug 2016

Things are moving along.  His diarrehia is lessening and his hoarseness is also.  He feels stronger and is eating more and more but he's lost approx 30 lbs so I'm thankful for the eating and hope he will gain some weight.  He is wearing the 5FU fanny pack over a 3 day period every 2 weeks and is also getting Folfox which I thought consisted of the 5FU. He's also still getting herceptin.  He has 2 more 3-day treatments then he gets another PET scan.  Fingers are crossed for good news.  At the onset of this journey, his doctor mentioned radiation after the chemo - he's hoping the chemo will bring him into remission (malignancy was seen in lymph nodes outside the local area) and the radiation will irradicate the tumor. I hope the Dr is right.  My husband went through a spell where his potassium was low and he became dehydrated so was infused with potassium and saline over a 3 day period yet he continued to work from the hospital.  (He may be just as stubborn as you are Ed.) He, like you, has neuropathy but not severe.  He also has sensitivity to cold but in his fingers only at this point and it lessens between treatments although never goes away completely. 

I've learned to live with this but there are still times when I become emotional.  Hubby never sees those times and I thank goodness for friends and my precious labradoodle - she sees and hears alot.

I need to thank you for sharing your ongoing experiences.  I will return - just not sure when.  I send my heartfelt thanks and good wishes to you and everyone on this site.  May God bless.

Angela

AngelaMarsh
Posts: 19
Joined: Aug 2016

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.

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

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

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Angela,

I have a couple of thoughts for you guys, just from my own experience, nothing to replace an oncologist's ideas.  I've done four different chemo regimens.  The 1st time I worked straight through the chemo/radiation (left 1/2 an hour early every day to get to radiation and took off Tuesdays b/c the chemo was a 7 hour affair), took off 2 months for the surgery (longer than I thought, but it's MAJOR surgery) and then worked through the 2nd course of chemo (off Tuesdays again).  I wasn't working the 2nd time (folfox), but I would have only lasted about 3 months of the 6 month regimen.  Your doctor is right that it hits different people in different ways, but there's a good reason why my doctor told me most folks only are able to do 8 or 9 rounds out of 12.   Just for reference, I'm a bit of a maniac who really didn't like cancer dictating to me how I was going to live my life--I was absolutely going to do whatever I wanted, cancer be damned.  

The neuropathy/cold sensitvity was the worst of the side effects.  I also became very taste sensitive to certain foods and just couldn't enjoy certain things that I liked.  The cold sensitivity ebbed after each round.  By the 11th round, it took the whole two weeks to go away.  After the 12th round, the neuropathy became permanent.  I'm still slightly cold sensitive, but I have permanent nerve damage to my hands and mostly feet.  I was also weak/fatigued to the point of falling down occasionaly and more than once having to crawl as quickly as I could to the bathroom (I made it all but once).  Like I mentioned above, everyone who knew me was convinced I was going to die and soon.  The folfox hit me very hard, but in the long run, it did its job and I'd do it again if I had to.

Regarding your husban's sensitivity to some foods, from what I'm familiar with different people have different triggers.  He'll find out what they are and will eat what works for him.  I think it's a great idea that you're seeing a nutritionist.  Folks tend to lose a LOT of weight/strength with EC.  One thing to keep in mind is that eating may switch from something he enjoys to something he has to do to stay alive.  Eating can become less epicurean and more medical with EC.

Regarding the timing of scans, I'd think that more frequent scans would better inform his doctors as to treatment, but I didn't have super frequent scans with either occurence of EC.  I was scanned every 3 months both times, and am now doing scans every 6 months. 

All the best,

Ed

AngelaMarsh
Posts: 19
Joined: Aug 2016

Dear Ed and Loretta,

The oncologist is Barry Boyd and our local hospital is Greenwich Hospital which is affiliated with Yale-New Haven Hospital.  Since I last wrote our schedule has changed slightly.  Rather than having his first chemo treatment Tuesday we will be seeing Dr. Manish Shah at Weill Corner Medical Center in New York City  which is affiliated with Columbia Presbyterian Hospital.  After the meeting I'm sure my husband will head downtown to work.  Dr. Shah is the specialist who has been consulting with our oncologist.  Our meeting is just a consult.  Once the tumor has shrunk which this folfox treatment is supposed to do (we're still waiting for the Her2 results), radiation will be the next step then surgery.  I'm not sure who said it but, yes, this is considered Stage IV because the lymph nodes are outside the local area.  As our oncologist said, "there's Stage IV and then there's Stage IV."  It's not in any organ according to the oncologist which he is happy about but he still wants to take an aggressive approach and he's hoping my husband is Her2+ so Herceptin can be added.

So there you have it.  

Thank you Ed for helping with how you handled your work schedule.  I think my husband is trying to think that through now.  He will be wearing a chemo "fanny pack" for 2 days then the third day he returns to the hospital so they can flush the port and remove the fanny pack - about a 15 minute procedure we were told.    I'm not sure how long it takes to put the fanny pack in place. 

Thank you both for providing so much information, your best wishes and prayers.  I will be in touch again soon.

Angela 

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello Angela,

Just a couple of thoughts:  I did the 5-FU (five FUs, for when one F U isn't enough to say to cancer) fanny pack twice and the only real problem with it was showering.  I had to wrap myself in saran wrap and be careful where I stood in the shower.  There is the embarassment factor, but you'd be surprised how quickly people become quiet when you mention it's chemotherapy.  I also had to regularly go into a courthouse with curious security, but they quickly accomodated me.  The fanny pack is a fairly quick install/removal.  I had it put in at the infusion center when I finished the folfox/herceptin and then had it in for 5 days.  They came out to my house, on a Saturday no less, to remove it.

Another thought is that you seem to be going to your local hospital, which isn't neccessarily the best plan.  If you live down the street from the Mayo Clinic, sure, but that doesn't seem to be your case.  I live in an area that has several world class cancer centers and where an MD Anderson "affiliated" hospital is at best the 4th best cancer center.  I'd be wary of who they're "affiliated" with and want to go to the major cancer center itself where people deal with EC specifically for a living.  If NYC is commutable for you, why not get a 2nd opinion from MSK.  This is the sort of thing you need to get right the first time, because there probably won't be a 2nd chance.

BTW, there is stage IV and then Stage IV, but Stage III is a helluva lot better than either one.  That's probably why radiation and surgery are being held off as potential later options.  Sorry to hear that news.

Best wishes,

Ed

rjollie
Posts: 9
Joined: May 2016

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
Posts: 19
Joined: Aug 2016

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

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

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

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Hi Angela,

Thank you for the update.  Actually I'm scheduled to be in the oncology lab later this morning at 9:00 A.M.  I've had an advance in my own cancer, and it is "moving on up as well as down."  So I began my 3rd series of Carboplatin & Taxol on October 20th.  Tomorrow will be my 5th treatment, and there is one more after this.  Then another scan to see if there has been a reduction.  Sometimes my results are mixed.  Some tumors are reduced in size while others have cropped up.  That's the nature of a Stage IV disease.  So I hope that this will afford me a long period of PFS (Progression Free Survival.)

Your report about the reduction in the size of the tumors is great news.  Have yourself a nice time away.  Hopefully you can find enough things to do to take your mind off cancer for a while.  Having a break is always therapeutic.  However, we all know what you mean by "scary" because there is so much uncertainty in this cancer.  I know you're glad he is off the Oxaliplatin.  That has some very hard size effects especially relatively to "cold"! 

I know exactly how you feel, having been both a caregiver to my husband, and now a Stage IV patient myself.  Even though you rejoice over each ray of hope, uncertainty is always lurking round the corner.  In your mind, you're thinking wow, this is great, but what's next?  And then there's the scans.  I must say I take great comfort in having a PET/CT scan as opposed to just a CT scan.  I like the knowledge that "live activity" is going to be detected more readily.  My husband had great success with the Carboplatin & 5-FU regimen.  So your hubby has had some powerful drugs and it appears that it's producing the desired result.  Still it's a stressful journey, so have a good vacation and rejoice in knowing that there is already a great reduction.  And the markers will probably show some additional decrease even after cessation of the 5-FU regimen.  Chemo still has a residual effect for about 3 weeks after the last treatment.  That's why the post scan is usually scheduled around that time frame. 

Once more, thanks for checking in.  All in all, I'm doing okay, even though treatments are rough and very debilitating.  I don't have to tell you that.  And I've always said, "When my husband has cancer, I have cancer!"  I know that's how it is for you too.  But as for me, I'm now entering into Year 5 of survival with my cancer and I could have died anytime from my diagnosis in November of 2012, so pleased to still be alive and enjoying (yet sometimes enduring) each day God grants me.

Take care and check back in when you have more good news!

Love Loretta

  

AngelaMarsh
Posts: 19
Joined: Aug 2016

I send live and positive thoughts for all so is. May God bless.

AngelaMarsh
Posts: 19
Joined: Aug 2016

Terrible typos!

babybrother
Posts: 1
Joined: Jan 2017

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. 

 

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello,

Sorry to hear about your brother.  Sounds like he's in a really tough spot.  I'm surprised you didn't find posts talking about stents here.  I recall the subject coming up many times.  I've never had one, so I mostly blow by those posts, but I seem to remember folks having a lot of struggles with them.  I struggled greatly eating when I was getting my initial treatment of chemo/radiation (esophagus fried shut).  I had to eat meat loaf and mashed potatoes everyday for a couple of months.  My oncologist prescribed morphine to help me be able to swallow; the morphine came in a half liter bottle.  I was (and still am) stunned that morphine could be dispensed by the 1/2 liter.  She also gave me something called "magic mouthwash" to help with swallowing.  My doctor suggested Ensure shakes to help me get some balanced nutrition, but I didn't care for them.

I never had taxol/cyramza, but I did have folfox.  That was some pretty hard core stuff.  I'm surprised your brother's doctor has taken so long to see about his HER2 status.  I was HER2+ my second time around (when I was Stage IV) and I was immediately put on herceptin to go along with the folfox.  I still get the herceptin weekly, over five years later.

My oncologist at one point thought I might have brain mets (I passed out while standing a couple of times) and she prescribed a CT scan, not a PET scan.  Maybe your brother's insurance will pay for that.  I know I've had PET scans denied by insurance many times.  

Sorry I don't have a large amount of useful information for you, but know that there's someone passing along positive thoughts for you and your brother.

Ed

Tommy5454
Posts: 3
Joined: Feb 2019

Hi deathorolgy are you still on this site? I wanted to ask some questions my father has a EC recurrence your story aem really similar to his 

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello Tommy,

I still come here regularly.  I'm happy to offer whatever I can.  Just let me know.

Hope your father is doing as well as possible.

Ed

Tommy5454
Posts: 3
Joined: Feb 2019

Hi deathorglory I wanted to get more kmformation from you my father was diagnosed and I see a lot of similar things you guys are going through your post. Are you still on this site? 

Tommy5454
Posts: 3
Joined: Feb 2019

Hi im glad you replied and willing to give more information for other.i research all the time for my father he was diagnosed couple days of turning 51 years old, he is 54yrs old now. he was diagnosed with stage III EC. he had chemo and radiation also had the stomach pull up surgery. everything was great went back to work then couple years later got hurt at work went for a scan then found a nodule on left lung also in the area where his EC was first time around, did the biopsy came back it was a recurrence of EC. he is right now on Folfox chemo his 8th round of it scan came back no signs of cancer. but i have read your post on folfox put you back in remission and you would do it again. The Drs never want to say they are trying to put you in remission just maintain it once i seen your post about it came hope. its all alot for everyone.

 

Deathorglory's picture
Deathorglory
Posts: 312
Joined: Jul 2013

Hello Tommy,

You guys seem to have run iinto good news.  A clean scan is certainly encouraging stuff.  Your Dad making it this deep into his folfox treatment is also good.  When I was getting it, my doctor said almost everyone stops after 8 or 9 rounds due to the side effects.  I hope your Dad is able to persevere and get the full benefit of the treatment.  When I had the recurrence in my lung, I was given 7-8 months.  That doesn't make for a good day.  But I'm still kicking 7+ years later.  Hopefully your Dad can get similar results.

Best Wishes,

Ed

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