Side effects eox treatment

Hope1972
Hope1972 Member Posts: 1
in Esophageal Cancer #1

Hi my name is julie im from the UK . Im a 25 yr old daughter that is looking for support for both of my parents who have both been diagnosed with cancer in feb of this yr. My mam has lung cancer stage 3a nsclc squamous and is having chemo currently with no side effects or very little. My dad on the other hand has esophegeal cancer with no spread and have been told it can be cured with the ivor lewis op. 

The chemo treatment my dad is on is harsh and have already reduced his dose by 20% due to sickness. 

 

He had his chemo 4 days ago and feels dreadfull , not sickly but just drained to the point of giving up. 

 

Any tips on how i can get him through this including his op?? 

 

Thanks xxx

 

 

 

 

 

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #2
    Julie~I've included most everything here but the kitchen sink!

    Well hello Julie~ I’m from the U.S.A.

    Bet you thought no one would ever answer you.  I read your letter when you first posted it, but I have had some emergencies in my own household.  Namely, my husband has AFIB and had a mini-stroke last week while we were out of town, and he had to be hospitalized for a couple of days.  Now we are back at home, and setting up appointments with a Cardiac specialist.  Obviously, that has delayed my ability to spend as much time as I normally would trying to help others along the Esophageal Cancer road! 

    You’re only 25—I am 78 and so I’m sorry you have to be introduced to the world of Cancer and serve as a caregiver for both your mom and your dad.   You mention the month of February of this year (2017) as the time they were both diagnosed.  If I’m reading that correctly, this is incredible that both should have a cancer diagnosis in the same month.  What a terrible way to start the new year!

    But no matter the amount of fatigue, tell your Dad that extreme fatigue is part of the side effects of chemo.  However, my husband is now entering his 15th year of survival from Adenocarcinoma at the Gastroesophageal (GE) junction.  So there are survivors, and Dad mustn’t give up this quickly. 

    You didn’t give us the ages of either parent, or the exact diagnosis of your dad.  So I’m sending some web links that will help you to know the side effects of chemotherapy.  You didn’t mention the particular chemo drug that is giving your dad such a fit, but I will give you the link and you can look up the side effects.  My own husband was diagnosed with EC Stage III (T3N1M0).  His pre-op drugs were Carboplatin and 5-FU, plus 25 radiation treatments.  But at the end of it, the treatment had killed the tumors, making an Esophagectomy a possibility.     

    There are plenty of reputable sites to learn more about Esophageal Cancer.  And we know how Dad feels, believe me, because I’ve been through 3 different series of chemo.  I, too, have at times, said, “Oh Lord, will I survive this round of chemo?”  Now as a Stage IV cancer patient, there are only palliative treatments for me, and “cure” isn’t one of the options.  But you say Dad should be able to have surgery, so that means he is NOT a Stage IV EC patient.  So that is really great!    

    While I can’t comment on NSCLC since I haven’t actively researched that cancer, I can give you some links that will help you understand this better.  I might add that I often use a couple of sites that originate from the UK and find them very “detailed” and simple to understand at the same time.  But I can identify with your own emotional frame of mind since my life’s experience now includes both the role of a “caregiver and a patient.”  We’re all devastated when we first learn we, or our loved ones, have been diagnosed with cancer!  We always hope that they will not be a “statistic” and in order to know more, we have to “go back to school”, and bone up on the physical anatomy. 

    First of all, about your mom—how is her attitude?  She is in the same “boat” with me.  She herself is a cancer patient.  So that means she has to “wear 2 hats.”  One as a patient, and another as a caregiver.  If she’s like me, and I’m sure she is, she is equally concerned about the welfare of the love of her life, as well as her own life.  So the first thing I always say is:  Please have a 2nd opinion.  Now I know that chemo has already started, but my own husband began his chemo treatments here at home at the suggestion of his first Thoracic surgeon and his oncologist.  Meanwhile, he also set up an appointment with the University of Pittsburgh Med. Ctr. For a 2nd opinion.  And here is the beauty of SECOND OPINIONS.

    Here in Norfolk, VA back in 2002, when my husband (age 65) was first diagnosed, there were no thoracic surgeons trained to perform the IVOR LEWIS MINIMALLY INVASIVE ESOPHAGECTOMY.  This is totally laparoscopic.  The oldest surgery that is still being performed in many medical facilities is the “Ivor Lewis Esophagectomy” aka “OPEN”.  This open Ivor Lewis surgery is the “most invasive”, and has the most potential for difficulty and recuperation.  It involves some massive incisions instead of the small Band-Aid size cuts utilized for the MIE.

    And so, secondly after telling “newbies” that they need a 2nd opinion, I advise them to seek out a well-known hospital that includes the Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY—commonly referred to as the MIE.  Now it was understandable that there might not be surgeons in this area, back in 2002, which were familiar with the totally new laparoscopic surgery since it was first developed in the mid-1990s at UPMC.   But now, 2017, surgeons around the world and here in the states, have taken extra training to know how to perform the latest and least invasive procedure.

    Although there are experiments with immunotherapy, it is not a settled science, and in most cases is still in clinical trials.  We’re encouraged by the results of many clinical trials, but so far, for Esophageal Cancer and Ovarian Cancer, nothing presently gives us any help besides traditional treatments.  However, it’s now been over 20 years and the MIE is “king of the hill”.  The University of Pittsburgh Medical Center (UPMC) performs the MIE on a routine basis.  Only with rare exceptions do they ever have to perform the more invasive and open surgery known as the Ivor Lewis.  So I will send you some information on that much preferred surgery (the MIE).  And I would impress on you the importance of seeking out a thoracic surgeon that is highly trained and practices in a medical facility that performs the MIE on a regular basis. 

    Now, Julie, since I know that the U.K. has national health care, and having corresponded with patients from your “side of the pond” previously, I know that as a private payer with my own insurance, I have a wide range of choices that you probably do not have.  I also correspond with some women on the Ovarian cancer link here that are from the U.K.  They’ve had more difficulty in the beginning attempting to have their own wishes followed.  It seems they are “assigned” certain physicians based on their problems, rather than being able to enter the door of any doctor’s office they wish.  If this is not the case with your mom and dad—all the better.

    Now I am over 65, so I have to have MEDICARE as my primary provider, but it does not offer me a wide variety of choices.  In other words, there are limitations on what they will pay for treatments, so I’ve purchased a secondary insurance.  Now mind you, I’m paying two premiums, one for Medicare and one for my own secondary plan. 

    That secondary plan has afforded us the privilege of going out of state for a 2nd opinion and choosing our own doctor.  (Something our present OBAMACARE promised, “If you like your doctor, you can keep your doctor…blah blah blah, but it wasn’t true.)  Under the “one size fits all” plan known as the “Affordable Care Act” we were supposed to have choices and everyone would pay less for their “mandatory” premiums.  However, that has turned out to be a disaster. 

    The younger people were supposed to sign up and pay a premium, or pay a fine for not signing up.  The choice was theirs.  More often than not, they did NOT sign up because the premiums and deductibles were too high, especially for a youngster just out of school, with a low-paying job or no job.  This didn’t work out for my young grandchildren, fresh out of school, and for the most part fresh out of a high-paying job.  So with a minimum wage job and not on the welfare rolls, this put an enormous burden on them.  So they paid the fine (often with our help).  Two now have jobs that provide health care.  The other two are employed but can’t afford the ObamaCare premiums and their employer does not provide health care benefits.  So the "plan", over-all has turned out to be not good.

    Many insurance companies have dropped out of their contractual agreements with the government for this reason.  A great number of older and sicker people have signed up for healthcare coverage, and fewer young healthy people have signed on than the government was counting on.  The “fines” are incremental and will increase if the people continue to not enroll.  This applies to older folks as well.    Bottom line, the healthy younger generation was supposed to sign up, pay a premium, and hopefully wouldn’t need treatments—to supplement the care of older sicker patients.  As a matter of fact, we had one of the original contributors to the plan, Jonathan Gruber, say that it was the ignorance and stupidity of the American people that this plan was allowed to p_a_s_s.  Of course, he only admitted that in a lecture, after only Democrats in charge of our Congress at the time enacted it into law.  Furthermore, Congress admitted to not even reading the entire bill before voting to p_a_s_s it.  Wow—that’s real representation of the people’s wishes.  The leading lady of the Democratic House of Reps. was famously quoted as saying..."We have to p_a_s_s it so we can know what's in it! Sealed  Surprised

    The “advantages” and “disadvantages” have been well televised for quite some time now.  By the end of this year under the “Affordable Care Act” (ACA) if nothing changes, millions will be left without a single health care provider in their state under which they can get coverage.  Insurance companies are paying out more than they are receiving in premium payments.  However, this is our own personal experience relative to the young people right here in my own family!  Others may have a different experience with the plan, if they’re receiving subsidies from our gov’t. but this is not the case with my family and my (adult) grandchildren.  Okay so much for my own personal opinion on the “non-affordable” universal health care plan currently in place here in my country (USA).   And you don’t have to comment on what your experience is, but I certainly trust that your parents will be able to have second opinions and be treated by the top doctors in the U.K.

    Julie—Now that I’ve said all that, I’ve finally found some information about how Esophagectomies are performed in the U.K.  If this article noted below, and last reviewed in October of 2016, represents current practices in the UK, it seems our hospitals are years ahead of Britain’s when it comes to laparoscopic surgery known as the MIE for Esophageal Cancer.  Please note that the “Ivor Lewis” Esophagectomy was named after Dr. Ivor Lewis who first introduced the Esophagectomy back in the 1940’s.  I note from the referenced link that this lists the “Transhiatal” and “TransThoracic” (OPEN) as the types of surgery most often performed.  They seem to refer to the MIE as “Keyhole Surgery”.  Judging by the info on that link, the UK seems to be more “into” the older surgeries than the newer totally-laparoscopic Minimally Invasive Esophagectomy that has been being performed here in the states for over 20 years.

    Moreover, it states that the surgery type will also depend on your doctor as to what he/she wishes to perform.  I will tell you that here in America, some doctors are comfortable with the Ivor Lewis surgery that they first learned so many years ago.  However, others have upgraded their skills.  Now while the surgeon may be confident that he/she can perform the Ivor Lewis, and no doubt they can, it is NOT the best surgery for the EC patient.  Please note how Dr. Luketich describes the difference in the more invasive surgeries and the “new” MIE (now been practiced here in the US for over 20 years!)  Morbidity is less, less blood loss, less hospitalization, quicker recovery, and no huge scars just to name a few. 

    Now Julie, I note one statement that you made about a "cure".  There are different statistics for one who has been diagnosed with Esophageal Cancer.  The “earlier” the stage, the better the chances are for long term survival.  However, although my husband is into his 15th year of survival even now our oncologist says he prefers my husband to use the word “remission” rather than "cured."   And we are grateful for this longevity. 

    However, there is no surgery that guarantees a complete cure, so I would be remiss if I said that Dad would be cured when he has the surgery.  So while I don’t wish to discourage you, I must be truthful, and in all my research on this Esophageal Cancer, I don’t see the word “cured”.  So it may well be that your Dad will have the cancer, have the surgery, and never suffer a recurrence.  We happen to personally know one gentleman who has had a recurrence in his 18th year of remission.  On the other hand, we also have a lady friend who is in her 18th year of survival without any recurrence.  However, her cancer was in such an early stage that she required neither chemo nor radiation.  So that’s just something to be aware of.  However, she had the Ivor Lewis Esophagectomy and carries the scars that come with that procedure.  And one more thing, you may say, “scars or no scars, if Dad can live 18 years longer, thank God!”  The pre-op & surgery & recuperation are worth the good years that can follow.  So don't count Dad out.  All things could work out and he might never have a recurrence. 

    Lastly, “Julie” once you have time to review all these links you will be well advised as to what is involved in the surgery, and hopefully you can help your dad through this phase, and even through the surgery.  I would wish that it were as simple as you telling the doctors which type of Esophagectomy you wish for your dad.  But it may not be that simple with the medical system in the UK.

    You most likely will have to be Mom & Dad's “advocate” and “intercessor” as well.  But the more you know, the more respect you will receive from your parents’ physicians.  I suggest you keep a journal, and learn to ask questions, and expect truthful answers.   Tell your Mom & Dad hello for us.  My husband and I wish for you and your dear parents the very best.  We know what it’s like to have both husband and wife with a cancer diagnosis.  You have a heavy load to carry yourself but you are doing one of the best things you can do for both of them.  Innocent You are researching their cancers and being a caregiver.

    Prayerfully & most sincerely,

    Loretta (& William)

    Your "homework" is outlined below!  Wink

    1.  http://squamousnsclcinfo.com/?gclid=COmIoZLMldQCFZ2FswodTuwORQ

    (These are results of a Phase III study in advanced NonSmallCellLungCancer  (NSCLC) with 450 patients.  Obviously Paclitaxel (Abraxane) combined with Carboplatin are the drugs being tested in this clinical trial.)

    ABRAXANE is indicated for the first-line treatment of locally advanced or metastatic non–small cell lung cancer, in combination with carboplatin, in patients who are not candidates for curative surgery or radiation therapy.

    ___________________________________________________________________

    2.  http://www.lungcanceralliance.org/what-if-i-am-diagnosed/understanding-treatment-options/chemotherapy.html


    Some info that may benefit your mom.

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    3.  http://www.cancer.net/cancer-types/lung-cancer-non-small-cell


    Info for your mom’s lung cancer

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    4.  http://csn.cancer.org/node/301646

    This is a letter I wrote to this fellow - “BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!”

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    5.  https://csn.cancer.org/comment/1581380#comment-1581380

    This is an answer to “Dogsavr” who was so upset because no one told her what to expect AFTER her husband’s Esophagectomy.  There are references here that you will want to keep on file, but right now you’re in the “present” stage—not in the “after surgery” stage.

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    6.  http://www.chemocare.com/

    You will find extensive info here relative to the chemo drugs your dad is taking.  May I say that extreme fatigue is commonly experienced by a majority of cancer patients on chemotherapy.

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    7.  http://chemocare.com/media/default.aspx

    Videos that may be helpful in understanding how chemo may affect the patient

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    8.   http://www.listbesthospitals.com/Hospitals-UK/England.aspx

    9.   http://www.nhs.uk/conditions/Cancer-of-the-oesophagus/Pages/Introduction.aspx

    10.  http://www.cancerresearchuk.org/about-cancer/oesophageal-cancer

    11.  http://www.cancerresearchuk.org/about-cancer/oesophageal-cancer/treatment

    12.  http://www.cancerresearchuk.org/about-cancer/oesophageal-cancer/decisions-about-your-treatment

    13.  http://www.cancerresearchuk.org/about-cancer/oesophageal-cancer/treatment/surgery/surgery-remove-your-oesophagus

    “…How your surgeon does your operation

    To remove cancer of the oesophagus you may have open surgery or keyhole surgery. Most people have open surgery.

    Open surgery

    Your surgeon can make a cut into your neck, chest or tummy (abdomen). They make 2 cuts to reach the oesophagus.

    The type of surgery you have depends on where the cancer is in your oesophagus. It also depends to some extent on which your surgeon prefers. The types are

    • trans hiatal oesophagectomy, which means having the operation through a cut in your abdomen (tummy) and neck
    • trans thoracic oesophagectomy, which is when the surgeon makes cuts in your abdomen and chest

    Trans thoracic oesophagectomy is sometimes called an Ivor Lewis operation, after the surgeon who first did the operation.

    Depending on which operation you have, you may have a

    • scar on your abdomen
    • chest scar, on the right or left which goes round towards your back underneath the shoulder blade
    • neck scar

    Or you could have a combination of these.

     Keyhole surgery

    Keyhole surgery to remove the oesophagus is still quite new. The medical name for it is a thoracoscopically assisted oesophagectomy, or you may hear the term minimally invasive oesophagectomy.

    You have this type of surgery in specialist centres by a specially trained surgeon.  The surgeon makes 4 to 6 cuts in your abdomen. They use a long, bendy tube called a laparoscope.

    Having keyhole surgery

    The laparoscope connects to a fibre optic camera. This shows pictures of the inside of the body on a video screen. The surgeon then uses the other incisions to put the other instruments they use to do the surgery into your body.

    Using the laparoscope and other instruments, the surgeon frees the stomach so they can move it into the chest. They then either continue with the keyhole surgery or do an open operation to remove the tumour and join the remaining stomach to the remaining oesophagus.

    The cut with open surgery is usually in the chest (thoracotomy), on your side.

    Laparoscopic surgery takes between 8 and 10 hours. This is longer than the more common ways of removing the oesophagus (open surgery).

    UK guidelines for keyhole surgery

    The National Institute for Health and Clinical Excellence has guidelines for keyhole surgery. These state that surgeons can use it to remove cancer of the oesophagus but they must

    • tell people having the surgery about the risks and benefits
    • monitor people closely
    • collect information about any problems people have and report on them

    Researchers are looking into whether keyhole surgery is as good as open surgery.

    Last reviewed: 

    28 Oct 2016”

    __________________________________________________________________

    14.  http://www.upmc.com/Video/Pages/default.aspx?vcat=937%3b%233753ef4c-73b8-4be7-b0c7-9c5fd91b952c%7cLung+and+Thoracic+Surgery

    “Esophageal Cancer: Surgical Innovations

    ​James D. Luketich, MD, highlights advances in esophageal cancer treatment through innovative surgery. The UPMC Esophageal and Lung Surgery Institute is a leader in developing novel surgical approaches to minimize recovery time and scarring while maximizing results and quality of life for patients after surgery.”

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    15.  http://www.upmc.com/Video/Pages/default.aspx?vcat=937;#3753ef4c-73b8-4be7-b0c7-9c5fd91b952c|Lung+and+Thoracic+Surgery

    Minimally Invasive Thoracic Surgery

    ​“Dr. Sarkaria” is practicing elsewhere now, but at the time he made this video he was serving at UPMC.  These two videos explain how a Minimally Invasive Esophagectomy is performed at the University of Pittsburgh Medical Center.

    Inderpal Sarkaria, MD, discusses the benefits of minimally invasive thoracic surgery, the types of procedures to which it can be applied, and the advanced techniques used at UPMC.

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    16.  http://www.upmc.com/patients-visitors/education/nutrition/Pages/default.aspx

    Patient Education Materials: Nutrition and Diet

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    17.  https://www.cancer.gov/about-cancer/treatment/side-effects/appetite-loss/nutrition-pdq

    Eating Hints: Before, During, and After Cancer Treatment

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    18.  http://webcast.aats.org/2013/files/Saturday/20130504_101e_0800_11.20 James D. Luketich.pdf

    PDF File - rather detailed

     Minimally Invasive Esophagectomy----General Thoracic Skills and Decision Making----Course AATS 2013
    James D. Luketich, MD, FACS….Henry T. Bahnson, Professor of Cardiothoracic Surgery
    Chair, Department of Cardiothoracic Surgery--University of Pittsburgh Medical Cen

    ______________________________________________________________________

    19.  http://www.cancer.net/cancer-types/esophageal-cancer

    Excellent info for Esophageal Cancer patients

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    20.  https://www.niddk.nih.gov/health-information/digestive-diseases/digestive-system-how-it-works

    Understanding how our digestive system works

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    21.  http://www.macmillan.org.uk/information-and-support/oesophageal-gullet-cancer

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    22.  http://www.macmillan.org.uk/information-and-support/resources-and-publications/videos

    __________________________End of references____________________

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #3
    Hello Hope

    Hello Hope,

    EC is a difficult beast and the treatments can be onerous.  Everyone reacts differently to chemo.  The side effects are similar across the board, but many variables make it hit different people in different ways.  I was Stage III my 1st time around, back in 2008, like your dad.  I was treated with chemo/radiation, then surgery, then a bonus round of chemo (stronger than the 1st round) to bayonette the cancer corpses.  The full course of treatment took about a year in total and I was hit hard by some aspects and not as hard by others.  The recovery from surgery was difficult b/c I came down with pneumonia.  That was really difficult and painful.  

    I'm sorry I don't have any specific advice to offer for how to deal with the problems that will inevitably arise, but know that folks figure out a way to get through.  Individuals find what works for them to make treatment tolerable.  I'd suggest going with what feels right to your dad.

    Sorry to hear about your parents and wishing your family the best,

    Ed

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