what happens after doctors decide further chemo will not benefit the patient

ginny4815

My husband is 59.  Was a smoker most of his life.  Diagnosed in July, 2015. Final Diagnosis was Gastric Adenocarcinoma. Stomach Adenocarcinoma w/signet ring features and Esophagus/Adenocarcinoma w/signet ring features, non-dysplastic squamous mucosa and metastatic lesions.  They decided to call it esophageal cancer.  They believe it started at the junction between the esophagus and stomach and grew down into the stomach rather than up the esophagus. Staging was IIIA (T3, N2, Mx).

He finished 4 rounds of chemo and then doctor told us he is incurable but they wanted him to finish the final 2 rounds of chemo to try to expand his life.  He will start the final round of chemo next week sometime.  After that, the doctor said he'd like to try to get my husband into some clinical trials for two particular drugs but I don't recall the names.

No one can say for sure how long he has and I don't expect them to.  I do have some questions if anyone has experienced or knows someone who has similar circumstances.

He has lost alot of weight but is eating better.  He never did have trouble swallowing and still doesn't.  Nausea was his enemy but we have that under control now I think.

After last chemo round, do you think he will gain some strength and weight back for a while before the cancer rebounds with a vengeance or something?  He wants to take some trips and just go do things.  He was a NICU nurse for 22 years taking care of all those angelic premie babies.  He has also been an avid biker most of his life and loves everything about motorcycles.  I wish above all that he will be able to ride just a few more times but I'm so scared he won't get all his strength back for a while.  Do you think he might?  I know I can ask the doctors too and see what they think. He wants to go on a cruise but is it safe to do so?  I guess I just need to know what to expect and how to prepare and care for him and do everything he wants to do or is capable of and I do know miracles happen everyday.

Any suggestions?  Thoughts?  Experiences??  Will be most welcome.  Thank you.

paul61

He should feel better after chemo ends

Ginny,

 I am so sorry to hear your husband’s prognosis. But as you have observed the medical profession has no “crystal ball” when it comes to survival, and you will find several stage IV survivors here who have gone well past their doctor’s “guess” at estimated survival time.

 I was diagnosed with esophageal cancer in 2009. They originally thought I was Stage I and so I went directly to surgery. When they completed the pathology of my removed esophagus, stomach, and lymph nodes they found cancer cells. That made me Stage IIb or III. About a month after surgery I began chemotherapy. Going through chemotherapy while by body what recovering from surgery and my digestive system was trying to process food in a whole new way was definitely a challenge. So, in a way, I think my situation may have been a bit similar to your husband’s challenge in terms of having two issues impacting my physical wellbeing.

My primary side effects from chemotherapy were nausea, diarrhea, and fatigue. I found that after I­­ completed my chemotherapy, it took about six weeks for the majority of the side effects to end. The nausea ended first, the diarrhea shortly thereafter, but the fatigue took some time to improve. Even though by body was still recovering from surgery; substantial recovery from surgery took almost a year, I felt much better with the chemotherapy drugs no longer being administered on a constant basis.

I would think that if you have your husband’s primary issue, nausea, managed that he should have some positive time once the chemotherapy drugs leave his body. If I were him, given the current prognosis, I would want as much quality time as possible. I know if I had a recurrence I would tell my oncologist that I would only accept palliative care that would improve the quality of my life not the quantity of my life.

Just as your husband is an avid biker, I am an avid golfer. I remember how special it was to play golf again after chemotherapy. I only played 9 holes and my score was terrible but I didn’t care. I am sure your husband would feel the same about his next bike ride.

Only God has control of the number of our days, but we certainly have some control over the quality of those days. You will find a number of stage IV survivors here who manage their cancer as a chronic illness. We all have a terminal illness, it is called being human. Those of us with cancer just have a better guess at how we will leave this earth.

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
Five Year Survivor

 

LorettaMarshall

Ginny-I agree w/Paul-Quality of Life is Key-Cherish that time!

 

My dear Ginny:

          After having read your letter, I asked “Dr. Google” to tell me a bit more about Stomach Adenocarcinoma with Signet Ring features, as well as Esophageal Cancer with Signet Ring features.  This is what I found.  I think they will tell you what you already know, but one more expert opinion always helps. 

   1.  http://www.oncolink.org/experts/article.cfm?id=1415

          This is a question from a patient with a diagnosis like that of your husband, and the answer is provided by Li Liu, MD, Editorial Assistant for OncoLink.  It is a very old post dated November 1, 2001.  Therefore, I don’t know about any advances in treatment of this rare cancer since the National Institutes of Health reference of 2013 seems to say the same thing.  The first link reads in part:

“…Surgical removal of stomach cancer is the treatment of choice, although, if you say the cancer has spread, an operation to remove the cancer is unlikely to be of benefit.

          Several clinical studies have reported results that indicate a moderate survival or palliative benefit for patients with advanced stomach cancer. There is no combination of chemotherapy which is clearly superior to others, but most active regimens include 5-Fluorouracil (5-FU), Cisplatin, and/or Etoposide. The combination of 5-Fluorouracil, doxorubicin, and mitomycin (FAM) has been used in the past with modest success…

            As far as diet, nutritional support of stomach cancer is a very important component of the treatment. Many patients are malnourished with some extent of weight loss prior to their diagnosis. If he is able to eat, well balanced diet with adequate protein and vegetables is appropriate.

Liquid nutritional supplements such as Ensure and Carnation Instant Breakfast are recommended if oral intake is inadequate. If he is unable to swallow, feeding tube placement may be required…”

 

2.  http://www.ncbi.nlm.nih.gov/pubmed/23719932

“…Prognostic implications of signet ring cell histology in esophageal adenocarcinoma…A total of 596 of 11,825 (5%) study patients had signet ring cell histology. Patients with signet ring cell histology were similar in age, race, and sex distribution, but had a higher grade (P <  .001) and higher stage (P <  .001) at diagnosis…

CONCLUSIONS: This large study of esophageal adenocarcinoma confirms the clinical impression that signet ring cell variant of adenocarcinoma is associated with an advanced stage at presentation and a worse prognosis independent of stage of presentation.

Copyright © 2013 American Cancer Society.”

____________________________________________________________________________________

Now Ginny, you haven’t told us who “they” are, but it seems that “their” diagnoses of both the Stomach and the Esophagus with Signet Ring features appears to make little difference in the treatments available.  You say:  “He finished 4 rounds of chemo and then doctor told us he is incurable but they wanted him to finish the final 2 rounds of chemo to try to expand his life.  He will start the final round of chemo next week sometime.”  Based on the two articles referenced above it seems that all are in agreement with your husband’s doctors about the advanced stage of this cancer and no curative surgery is possible. 

          At this point, may I say that I am a (Stage IV) Terminal Ovarian Cancer/Peritoneal Carcinomatosis patient that has already been given the gift of life for far longer than I, or the doctors, expected.  I’m also the wife of an Esophageal Cancer Survivor.  You are right, doctors cannot give us a definitive answer as to how long we might live when we have an incurable disease, but it is never as long as we would like.

          Yes the years we have lived thus far seem far too few because there is so much more we would “like to do.”  Although I have made my peace with God and am certain that my eternal destiny is Heaven based on God’s word, the Lord knows that I still have grown children, grandchildren and great-grandchildren that “need me”.  I remember telling my surgeon that while I was ready to die, I felt I needed to be around a lot longer because there were so many people that needed me, more than I needed them!  Don’t we all like to think that we have more to do to contribute to their well-being? Being a mom and grandmother, soon to be 77 years old, I know that there is still much advice gained by years of experience in living that I would like to share.  The two of you feel the same way I’m sure, although you are much younger. 

          I do have some experience in the field of chemotherapy that might be of help.  Although you don’t say which chemo agents your husband is receiving, I know that chemotherapy has both a cumulative effect and a residual effect for at least 3 weeks from the last date of infusion.  That’s why doctors like to give a repeat scan at the end of the treatment series to document any improvement or lack thereof.  So I do hope that when a repeat scan is done (usually a PET/CT scan) that it will at least show that the growth has slowed.  That would be a blessing.  And as for a clinical trial, that would depend on if there are those actively in progress now that he could become a part of.  Clinical trials are varied, but advanced cancer patients are eligible, but trials are not always “open” at the time doctors suggest that clinical trials are a possibility. 

          Even if there were openings, your husband would have to decide whether or not he wants to continue pursuing treatments or opt to “do some of the things he enjoys doing.” There will come a time in my own personal life that I will have to make the choice as to whether or not I want to continue treatments, or sign up with Hospice Home Health Care and opt for quality of life rather than quantity of life.  But enough about what I am facing, I just wanted you to know that I can “feel” for your husband, and I can “feel” for you as a caregiver.  You see my husband was diagnosed with Esophageal Cancer Stage T3N1M0 (Adenocarcinoma at the GastroEsophageal junction) back in 2002 and had a Minimally Invasive Esophagectomy May 17, 2003.  So I know the emotions that accompany a cancer diagnosis from the standpoint of the wife as caregiver.  I also know the emotions involved in being told that my cancer is incurable, and that palliative treatments are all that are possible.  So naturally, we don’t want to “give up” without doing all the research we can and finding the best doctors we can that are the most knowledgeable about our particular cancer. So from that standpoint, I am able to say something about chemotherapy, as I have had two different regimens of chemotherapy. 

          You also say that your husband has lost a great deal of weight, although he doesn’t have difficulty swallowing.  I can tell you that being able to swallow is a blessing.  Having difficulty swallowing is one of the tell-tale symptoms of Esophageal Cancer, along with acid reflux.  As for the nausea, I took one tablet of “Granisetron (KYTRIL) every morning the first thing when I awoke.  I sat a bottle of water beside my bed with the nausea med, and when I first opened my eyes in the morning, I took the pill.  By the time I was fully awake and ready for breakfast, the pill had time to take effect.  It’s best to take nausea meds “prior” to being nauseous. So I don’t know how you managed to get his nausea under control, but that will be a major factor in him being able to gain weight.

          Since your husband is an avid biker, I know that he would love to be strong enough to get back on his bike and ride a few more times. Now mind you I am not the doctor, but my own experience is that while I will never have the amount of energy I had prior to my diagnosis, that I am much stronger now than when I finished my last dose of chemo on September 25, 2015.  Now if he opts for more chemo right away in a clinical trial, he won’t have time to regain much strength.  Let’s face it, chemo can drain one of most of their energy.  So it would seem possible that he could get enough energy to get back on and take another joy ride but most likely not if he jumps right into a "trial." 

            And Ginny, I know I haven’t been able to offer anything new for you, I felt you needed to know that we have read your letter, and prayed for you.   I wouldn’t be surprised if the doctor tells you, “Do anything you feel like doing! A cruise would be ideal even if he didn't feel like riding his bike.  That would give you a lot of "together time!"   And yes, although we are forced to accept the reality of things we cannot change, such as an incurable cancer diagnosis, miracles do happen.

           A miracle can be as simple as an extended period of life for longer than doctors thought possible.  (And who would dare to call an extended period of quality life “simple”, but you know what I mean.) In that regard God has given me two miracles already—one for my husband’s current remission from EC, and my own extension of life which could have ended in 6 months after diagnosis in November of 2012.    So we will pray to that end that you and your husband will be able to have an extension of time together and he will have the energy to take that cruise, ride that bike, or simply sit in each other’s presence, reminisce, wrap your arms around each other and hold on tight.  I’m sure you love him more now than ever before.  Yes, life is precious—one more day together—one more day to say “thank you for all you’ve always done for me”—and one more day to feel each other’s embrace—and say “I love you more than you could ever know” even as the tears flow—one more time!  Cherish these precious moments!

Sincerely,

Loretta

(Wife of William, EC T3N1M0, Minimally Invasive Esophagectomy @ University of Pittsburgh Med. Ctr. By Dr. James D. Luketich on May 17, 2003)