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Stage IV first week of chemo

Cometsmom's picture
Cometsmom
Posts: 7
Joined: May 2018

This is my first post to the forums. im grateful to have found this board. i just wrote our story in the "About Me" section. My husband was recently diagnosed with stage IV esophageal cancer and had his first week of chemo which after two relatively benign days went downhill fast. He has already decided not to take another dose which is supposed to begin June 4th. They have already given him a prognosis of three months to a year and my fear is that if he doesn't continue it will be even shorter. He is miserable with mouth and throat sores as well as metallic taste and smell.  He cannot eat (hasn't been able to eat solids in several months) and today can't even swallow his saliva. I hate to see him suffering so and I fully support his decision but I'm anxious about what declining treatment may mean for his prognosis in terms of how much time he will have left. I hope that he will get back to feeling well eno to have some quality of life before the time comes. 

paul61's picture
paul61
Posts: 1346
Joined: Apr 2010

Cometsmom,

I am so sorry to hear that your husband is having difficulties with his first cycle of chemotherapy. I had a similar chemotherapy regimen. I had Cisplatin, Epirubicin, and 5FU. I had the Cisplatin and Eprirubicin every three weeks, and I had the 5FU via personal infusion pump 24 x 7 for 18 weeks.

My first week of chemo I had the identical symptoms your husband has with the exception that on the last day of my first week, I passed out heading for the bathroom (I also had diarrhea), and had to be taken to the emergency room and treated for dehydration.

The important thing is that there are medicinal interventions to improve or eliminate all of the side effects your husband is currently experiencing. My oncologist prescribed “magic mouthwash” to help with the mouth sores (I also had them on my lips), he also adjusted my dosage of 5 FU down slightly and that was the last of my mouth sores; as long as I gargled with the mouthwash three times a day. They gave me Lomotil for the diarrhea and I found if I went in for IV hydration two days after each of my Cisplatin / Epirubicin infusions I was not dehydrated and I had less fatigue and nausea. After a couple cycles of treatment I learned to get ahead of the side effects by taking my prescribed medications in advance of the onset of the side effects.

I assume your oncologist has given you an “on call” number to reach him or his chemotherapy nurse. I recommend you use that number. Don’t wait until your next scheduled appointment to have your husband’s symptoms addressed.

I was on a three-week cycle. I found the first couple days after my infusion went fairly well; I felt fairly good because I still had a fair amount of steroids in my body from the infusion prep. I had difficulty sleeping but I felt fairly good. Then day three through day seven got difficult with some of the side effects we discussed above. Week two was better, then week three was “almost normal”. Then the cycle started again with my next Cisplatin / Epirubicin infusion. Since I received 5 FU constantly I never had a break from the 5 FU so unfortunately, I had to get used to my food tasting like I had pennies in my mouth.

But the important message that I am trying to convey here is that the side effects are minimized as you learn how to manage them more effectively and your oncologist adjusts your chemo regimen to minimize them and prescribes the appropriate medications to address the issues.

The other important message is that many esophageal cancer patients experience an improvement in their ability to swallow after the first or second cycle of chemotherapy. You do not mention any planned radiation therapy but that accelerates the shrinkage of tumor size as well.

Hang in there for at least two cycles and give your oncologist time to mitigate the side effects before you decide to forgo something that can make your quality of life much better in the long term.

 

Now for a message from me to your husband that he probably does not want to hear but is important for him to hear. You do not want to just quit treatment and let things proceed as they will. If you do not have at least palliative intervention you will soon not be able to even swallow your own saliva. You will have to use a drain or carry around a container to collect your saliva. The lymph nodes around the tumor will become enlarged and press against other structures in your chest and abdomen and cause pain and at some point, even difficulty breathing.

I could go on with other complications that can occur that are even more uncomfortable but the important message here is that if you discontinue treatment you will not just “gently drift away” it can be very difficult for both you and your family.

If you give chemotherapy a chance and you have the success many people have there are protocols to address the liver involvement issues as well. More about that later.

I have to admit in week one of my second cycle of chemo (week four of treatment) I said to my wife, “if this is what the rest of my life is going to be like, I would just as soon quit now”. I was wrong it got better. You will find other Stage IV long term survivors here. They, like you, had their challenges but they have come through it and are happy to be here to continue to love and be loved by their families and friends.

If you would like I can send along my contact information via private message and we can talk a bit if you think that would help you with your decision.

Best Regards,

Paul Adams

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

Deathorglory's picture
Deathorglory
Posts: 309
Joined: Jul 2013

Hello Cometsmom,

I'm sorry to find you guys here, especially with such a story as yours.  There are a couple of things I'd like to point out.  If you guys don't wish to continue with his treatment, there are a number of things that a quality palliative care team can do to make for a higher quality of life (for example, help to get him able to swallow/eat).  Any good hospital/cancer center will have folks on staff whose sole focus is to deal with palliative care.  You should definitely check in with your hospital to see what they have available.  Also, his oncologist should be able to help with side effects.  This is definitely a conversation worth having with him.    There are many different ways to help deal with most side effects.  As Paul mentioned, there's a lidocaine based "magic mouthwash" that can really help with mouth sores, for example.  I had mouth sores as well, and the mouthwash cleared it up pretty quickly.

Another thing that is important, especially for stage IV folks, is to make sure of your husband's HER2 status.  If he is HER2+, there is a treatment that can be a powerful ally in fighting EC.  I am Stage IV and was given 7-8 months as a prognosis in 2011.  Herceptin (for HER2+ cases) has been my path out from under my grim prognosis.  

Again, I'm so sorry that you guys find yourselves here.  I'm wishing you all the best,

Ed

Cometsmom's picture
Cometsmom
Posts: 7
Joined: May 2018

Thank you both for relating your experiences.  Today has been another difficult one. The hiccups that have always accompanied this since prior to his diagnosis are back full force.  We know the diaphragm has the tumor practically sitting on it.  He's exhausted, and very emotional today.  we see the oncologist Wednesday but I will call for the Magic Mouthwash before then. He cannot swallow his saliva and is using a container. He's extremely demoralized.  Maybe once he feels better from the mouth sore standpoint, he will rethink his decision. It's awful to watch this very upbeat and active man be in such pain.  The original plan was for radiation along with the chemo but once they found it had spread, that was off the table  they felt it woukd be too grueling for no benefit  I will post again and let you know how things progress. If he refuses, I think hospice is the next option. 

Cometsmom's picture
Cometsmom
Posts: 7
Joined: May 2018

My husband was admitted to the the hospital yesterday for dehydration and pain control.  He's on a new feeding pump that he can use all night instead of the boluses he was giving himself.  His mouth sores and abdominal pain are being actively treated and he is in less pain physically. I know he's very depressed and that's being addressed as well. I'm hoping that after a couple weeks of feeling better, he will reconsider the chemotherapy. The doctor told him they can tweak the dose and other things to make him more comfortable. I'm hoping he will keep an open mind. Ultimately I will support his decision and whether he wants more quality than quantity of life but I'm personally not ready for him to go, as none of us are...

Cometsmom's picture
Cometsmom
Posts: 7
Joined: May 2018

my husband was discharged Sunday and the mouth sores are slowly getting better.  there are still some under his tongue but he has been able to sip fluids and get them down!  it seems like the chemo may be helping in some way with that. He's on a 12 hour feeding pump and is physically feeling stronger with that. We see the oncologist Tuesday to discuss how to proceed. In the hospital the doctors talked about changing the dose or using a different combo of meds and see how that goes. Looking forward to what else he might have to offer!  He had talked about immunotherapy and how he could switch to that but I want to do some research.  Thanks for letting me keep you updated!

Cometsmom's picture
Cometsmom
Posts: 7
Joined: May 2018

my husband had chemo again today. Decided to give it another chance. It's a different combo and he's so much stronger now than he was before he had it for the first time.  He is able to swallow again and eat for now so he's happy about that. I'll keep you posted. Fingers crossed!

Deathorglory's picture
Deathorglory
Posts: 309
Joined: Jul 2013

Hello,

Hopefully the chemo will reduce the tumor and he'll be able to swallow and eat even better.  What did you find out about possible immunotherapy treatment?

All the Best,

Ed

staceycorry's picture
staceycorry
Posts: 14
Joined: Dec 2017

Hi

So glad to hear he is doing better.  I see this and it brings me back to when my father went through this.  There is hope.  My father just turned 85 and went to MD Anderson to get the full treatment last year.  He had the same symptoms.  It was terrible.  What I learned is get a feeding tub if he cant eat.  He needs food and water to be strong enough to stand the treatment.  There are prescription formulas you can use to keep his nutrition up.  Insurance will usually cover it.  Praying for you both.

Stacey

siutis12's picture
siutis12
Posts: 13
Joined: Jun 2018

HI Stacey 

I was diagnosed with esophageal cancer on March 22, 2018. Feeding tube installed on March 29. Chemotherapy and radiation followed.  Recently completed 5 chemotherapy and 23 radiation treatments. Began eating again on May 19. Previous meal was March 2. 

Before this I was very fit 56 year old powerlifter and bodybuilder. I've lost 35 pounds. Surgery is scheduled for July 26. Due to tumor size , they have yet to stage me because they are unable to do endoscopy and ultrasound.  That is scheduled for July 19. 

My question to you is about MD Anderson.  My care has been at UT Southwestern in Dallas.  We're you impressed with the doctors and staff at MD Anderson? I'm thinking I should go for at least a second opinion. 

 

Thanks in advance for any insight you can provide. 

Donald 

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

Dear Donald - It's always a good idea to have a SECOND opinion.  What kind of surgery is scheduled when you don't know your stage?  HhhmnmmUndecided

If you insist on staying in Texas, have you checked out Houston Methodist?  They actually have a better record for treating Esophageal Cancer patients than does MDAnderson according to Health.US News.com when it comes to GI surgeries!

Staged one week and then surgery scheduled the following week doesn’t give you much time to seek a SECOND opinion.  Second opinions are strongly advised.  See the Mayo Clinic report below.  You will be surprised as to how many patients have come to them for a SECOND opinion and found that indeed only 12% were correct!

 Esophageal Cancer comes under the category of gastroenterology and GI surgery.  Houston Methodist is ranked No. 12.  Accordingly, it is ranked above MDAnderson relative to Esophagectomies.  Furthermore, I would only see a thoracic surgeon who is thoroughly trained and has performed multiple “Ivor Lewis Minimally Invasive Esophagectomies.”  This is the least invasive with the quickest recovery time.  It is commonly called the MIE.  Many thoracic surgeons have NOT updated their skills to learn how to perform this totally laparoscopic procedure, so I urge you to consult with a surgeon at a major hospital that majors in the MIE procedure. 

My husband was treated at the University of Pittsburgh Medical Center (UPMC) in Pittsburgh quite naturally.  He was diagnosed with Adenocarcinoma at the Gastroesophageal junction (GE).  He was staged as T3N1M0.  "T" stands for tumor.  This meant that all four walls of his Esophagus had been penetrated by the cancer.  "N" stands for nodes- and cancer was also found in 2 local lymph nodes.  However, the “M” (metastasize - meaning spread ) was “zero”, meaning that the cancer had not yet traveled to another major organ.  That was a blessing.

Dr. James D. Luketich pioneered this totally laparoscopic procedure in the mid-90s and today it is the surgery used by UPMC.  UPMC ranks #6.  Houston Methodist ranks #12.  MDAnderson doesn’t rank in the top 50 hospitals for Esophageal cancer surgeries.  (See the USNews rankings for Gastrointestinal surgeries)

 So I would strongly recommend you have a SECOND opinion.  My husband went there for a SECOND opinion, although we live in Virginia Beach, VA.  He was 65 at the time of diagnosis and his only symptom was a pesky hiccup.  You can read more about us by clicking on our picture.  My husband was in and out of the hospital in 5 days and downtown shopping with me on Day 8.  Now there are a lot of blanks to fill in but that is the story in a nutshell.  His surgery took place on May 17, 2003, and he is still cancer free till this very day.  We make no apologies for saying, it is a true blessing from the Lord.  My husband is now 81.  We cherish all our days together.  Please take time to choose your surgeon wisely, and by all means have a SECOND opinion. 

An Esophagectomy is a major-major surgery and not all doctors graduated at the top of their class as did Dr. Luketich.  He performed the MIE on my husband back in 2003.  So you will see a couple of videos below my name.  Lastly, if you would like to talk with my husband personally, simply send us a private message.  He would love to share his story of success.

Not every EC story is one of “losing”—All the stats are not good BUT there are winners and you want to hear their stories of that I am certain. 

Here’s hoping that all things will turn out well for you.

Sincerely,

Loretta (Wife of William, DX 11-2002 @ age of 65 – Pre-op chemo/radiation then MIE surgery @ UPMC by Dr. James D. Luketich on May 17, 2003.  Now celebrating 15 years plus of being cancer free!)

__________________________________________________ 

1.     https://health.usnews.com/health-care/best-hospitals/articles/faq-how-and-why-we-rank-and-rate-hospitals#best-hospitals

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2.     https://health.usnews.com/best-hospitals/area/tx/university-of-texas-md-anderson-cancer-center-6741945/gastroenterology-and-gi-surgery

 “University of Texas MD Anderson Cancer Center Rankings & Ratings

Gastroenterology & GI Surgery Overall Score 47.6/100…

Gastroenterology & GI Surgery Scorecard

A hospital's overall Gastroenterology & GI Surgery score is based on various data categories, including volume of high-risk patients, nurse staffing and patient survival. The 50 top-scoring hospitals are nationally ranked. See the full U.S. News national rankings in Gastroenterology & GI Surgery or hospital ratings in colon cancer surgery.

Overall

National Rank Not Ranked

Overall Score 47.6/100…

 Reputation with physicians in specialty

 Percentage of gastroenterology and GI surgery specialists in 2015, 2016 and 2017 who named hospital as among best for very challenging patients.

Average ?

Most hospitals are named by a few specialists or not at all…”

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 3.      https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

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4.      https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

  • ____By Elizabeth Zimmermann

“Mayo Clinic researchers demonstrate value of second opinions

April 4, 2017

ROCHESTER, Minn. — Many patients come to Mayo Clinic for a second opinion or diagnosis confirmation before treatment for a complex condition. In a new study, Mayo Clinic reports that as many as 88 percent of those patients go home with a new or refined diagnosis – changing their care plan and potentially their lives.  Conversely, only 12 percent receive confirmation that the original diagnosis was complete and correct.

These findings were published online today in the Journal of Evaluation in Clinical Practice. The research team was led by James Naessens, Sc.D., a health care policy researcher at Mayo Clinic.

Why get a second opinion

When people are sick, they look to their doctor to find solutions. However, physicians don’t always have the answers. Often, because of the unusual nature of the symptoms or complexity of the condition, the physician will recommend a second opinion. Other times, the patient will ask for one.

This second opinion could lead to quicker access to lifesaving treatment or stopping unnecessary treatments. And a second opinion may reduce stress in a patient’s extended family, when they learn the new diagnosis does not carry dire genetic implications. These scenarios can result from diagnostic error.

Odds are good the diagnosis will be adjusted

To determine the extent of diagnostic error, the researchers examined the records of 286 patients referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester over a two-year period (Jan. 1, 2009, to Dec. 31, 2010). This group of referrals was previously studied for a related topic. It consisted of all patients referred by nurse practitioners and physician assistants, along with an equal number of randomly selected physician referrals.

The team compared the referring diagnosis to the final diagnosis to determine the level of consistency between the two and, thus, the level of diagnostic error. In only 12 percent of the cases was the diagnosis confirmed.

In 21 percent of the cases, the diagnosis was completely changed; and 66 percent of patients received a refined or redefined diagnosis. There were no significant differences between provider types.

“Effective and efficient treatment depends on the right diagnosis,” says Dr. Naessens. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling ─ not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

Risks of cost containment

To manage costs in a health care environment with ever-increasing costs, health insurers often limit access to care outside their network, effectively limiting referrals. Further, primary care providers may be more confident in their diagnostic expertise than warranted in a particular case, or patients may lack the knowledge or assertiveness to request a referral.

“This may prevent identification of diagnostic error, and could lead treatment delays, complications leading to more costly treatments, or even patient harm or death,” says Dr. Naessens. “We want to encourage second opinions when the provider is not certain.”

The National Academy of Medicine cites diagnostic error as an important component in determining the quality of health care in its new publication, Improving Diagnosis in Health Care:

Despite the pervasiveness of diagnostic errors and the risk for serious patient harm, diagnostic errors have been largely unappreciated within the quality and patient safety movements in health care. Without a dedicated focus on improving diagnosis, these errors will likely worsen as the delivery of health care and the diagnostic process continue to increase in complexity.

“Referrals to advanced specialty care for undifferentiated problems are an essential component of patient care,” Dr. Naessens says. “Without adequate resources to handle undifferentiated diagnoses, a potential unintended consequence is misdiagnosis, resulting in treatment delays and complications, and leading to more costly treatments.”

The researchers identified costs associated with second opinions, and Dr. Naessens notes, “Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly.”

He says that he and his team are pleased by the National Academy of Medicine’s call for dedicated federal funding for improved diagnostic processes and error reduction. They also plan further research on diagnostic errors and hope to identify ways to improve the process.

Dr. Naessens leads quality and safety research initiatives within the Office of Health Care Practice and Policy in the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. He is also the scientific director for the Florida team within the center…”

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5. http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/esophageal-cancer-overview/

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 6.     https://www.vitals.com/doctors/Dr_James_Luketich.html?gclid=EAIaIQobChMIgLuuhJ3z2wIVk7bACh14RAurEAAYASAAEgKVOPD_BwE

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 7.    https://www.youtube.com/watch?v=mFboj87THJE

Dr. Luketich on video

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8.    https://www.youtube.com/watch?v=7S3owHnfcCs

 Dr. Luketich lecturing medical students about latest techniques – Questions and Answers

_________________End of References______________

 

 

Cometsmom's picture
Cometsmom
Posts: 7
Joined: May 2018

Since I last posted, my husband's chemo has been changed twice. The carbo and taxol regimen was too taxing on his blood counts. He has had two transfusions and took a 7 week break from chemo. He also developed neuropathy in his feet. The new treatment regimen is leucovorin, irinorubicin and then a 48 hour pump with 5-FU (which he had initially for 96 hours), every other week.  His  latest CT scan showed a new enlarged lymph node. There are some new mediastinal nodes which our oncologist feels are still too small at this point to be callied new metastasis but they will watch closely.  So far, he is tolerating this regimen much better!  He is able to eat everything he wants so the chemo is doing its job as far as keeping the main tumor small enough. He's put back on almost all the weight he had lost and doesn't look as ill as he had. I'm hoping for continued tolerance and no new metastases. We are 10 months out from the initial diagnosis for which I feel blessed.  I will keep posting updates as we go along. Thank you for all the support. I continue to read your storpies and pray for everyone going through this. 

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