Dear Susan:
It seems that my letter to "Sanjeev" from India, has raised some questions as to whether your husband might yet be a real candidate for surgery. I certainly think you have some questions that require legitimate answers other than "live with Stage IV" for your husband!
Part of your posting on November 3rd reads: " November 3, 2009 - 9:20pm
This is my first post to this group. I have checked posting a couple of times since my husband was diagnosed with stage IV esophageal cancer in July and have found it helpful, thank you. Discussion boards are new to me, please forgive any novice mistakes.
He has completed 5 weeks of radiation and 5 rounds of chemo. The first 3 rounds put him in the hospital. He had a dose reduction for round 4 and 5 and did well. Radiation was okay, no major problems. He will start the 6th round tomorrow, and hopefully it will be the last."
On November 16th, you write:
"November 16, 2009 - 10:54pm - Chemo and radiation only choice?
I have read and re read William’s post and have the feeling we are missing something. When my husband was initially diagnosed we were told he is considered stage IV since they found esophageal cancer cells in fibrosis which had blocked his ureters (tubes coming down from kidneys) and he was NOT a candidate for surgery. We were also told that once you were staged, that is what you were forever and you were classified into a group depending on how you responded to treatment (partial response, no response, further spread and, complete response). Does this sound familiar to anyone?
So far 2 PET scans, an MRI and a couple of CT scans have shown no cancer in the lymph nodes or any other organ. The radiation oncologist told us to wait 6 to 8 weeks to see what the treatment had accomplished. As of the last PET, one week out of radiation, there was no change to the size of the tumor in the esophagus but nothing “lit up”. Is there anyone out there with stage IV who was able to have surgery, and did it help? - Susan"
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Now Susan, wish I were a doctor, but my very best advice to you is to have a second opinion and very soon if you have not had one. I would not trust only one opinion, since we have a Stage IV on this site presently who has just had surgery.
Am I understanding that after treatments the only cancer found is in the Esophagus? Are there no longer any cancerous cells in his ureters? Are his tubes no longer blocked? I just keyed in some words to the "Mayo Clinic" site to make an inquiry regarding ureters. You might want to check out this link as it is talking about the ureters.
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http://www.mayoclinic.com/health/bladder-outlet-obstruction/HO00023
"... Bladder outlet obstruction refers to any condition that blocks urine flow from the bladder into the urethra, the tube that carries urine out of your body. If not treated, urine backing up in your urinary tubes (ureters) and kidneys can lead to bladder stones, bladder infection and permanent damage to the bladder muscle and kidneys...."
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Susan this is "above my pay grade". I have no idea what this all means, except when I read this, it seems like blockages can be remedied. I just say, please check into this further.
Are his kidneys functioning properly now?
Am I to assume the lymph nodes in the ureters no longer show to be cancerous as a result of the chemo?
I have questions but no answers for you. I am not offering any advice regarding this "Esophageal cancer cells in fibrosis" statement. I have no earthly idea what that is.
I try to only talk about some of the things I can understand, mainly EC Stage III. (There is plenty more to know.)
There are Stage IV Esophageal Cancer patients that have been operated on. Our gal "Kath" who uses the name of "MUMPHY" has a husband named Al. They live in Monroeville, PA, close to Pittsburgh, Pa. I don't know all the particulars of Al's first symptoms which led him to come to be diagnosed as Esophageal Cancer Stage IV. However, he had successful chemo and has just come through an operation very successfully. He was first diagnosed in May 2009. His doctor is Dr. James D. Luketich, the same of mine. Dr. Luketich operates out of the University of Pittsburgh Medical Hospital presently.
I don't know the particulars of your geographical location but if you have the opportunity, and live anywhere near Pittsburgh, and if you have not had a second opinion, I suggest you go there. If you have not had a second opinion, and do not live near there, at least call his office and have them suggest a thoracic surgeon nearer your home. Dr. Luketich has trained many surgeons now and there may just be one he can recommend for your husband.
There is another person posting on this site whose husband is Stage IV (diagnosed in March 2009), and his Stage IV is inoperable. I do know that he has infiltration in other areas Mets to lymph nodes, lung, liver, and peritoneal cavity. --. She is very encouraging. She goes under the name of "JaneE". For your convenience I am taking the liberty of posting their replies to your original posting. Sometimes it is difficult to keep the same "chain of thought" going on the same post. For that reason, I am going to post my answer to your comments as a separate topic.
So here are 2 Stage IV patients who are actively posting on this discussion link presently. Mumphy's husband Al, as I said, has just had an operation. Yet there is Jane's husband who is deemed inoperable. However he is undergoing palliative chemo treatments and is presently in remission. His cancer has infiltrated too many places to be able to operate.
Now remember I am not a doctor, but from your posting, I cannot understand why your husband is not considered a candidate for surgery, even though he is Stage IV. I cannot understand why he would not be able to have surgery now if all the testing have shown to be negative. You must get to the bottom of this. There is a window of time between the last of the pre-op treatments and the time operations are deemed most favorable. The chemo has a residual effect, so the doctors wait at least a couple of weeks ago to test for those final results. The radiation can produce a scarring in the radiated area which makes that area more "hardened". (If by chance your husband could be a candidate, waiting 2 months to see how much change has taken place seems a bit long.
I never waited 2 months for my last testing before surgery. That is why so many say, they are going for "restaging", and then they hope to get a date for surgery. If I were you, I would not rest until I had received a "final answer".
If you have had only one opinion, you are definitely in need of another. At least you would have the peace of mind of knowing that you have done all you can do. I see from reading your posts that your husband had side effects that are within the "normal" range. I, myself, was never tired, but many complain of excessive fatigue. And no wonder, their body is being "invaded" and there is a "war going on internally". The chemo sweeps through like a swarm of locusts, destroying so many cells that many patients wonder if they can ever regain their strength and some normality to life.
Also it is not uncommon to lose your train of thought and have short-term memory loss from some of the drugs. Like I said, I had 5-FU and Carboplatin. I didn't have any nightmares, but I did have some fleeting "daytime illusions or hallucinations" if you will. It was like some vision swept across my path of vision in a flash and I hadn't even been thinking about anything that related to that weird happening. All my thoughts and speech was coherent, but I remember telling Loretta, "You won't believe what I am seeing!" I don't even remember what it was now, but the drugs can do that. We might really be excused for "saying something totally out of character". Some drugs can alter one's mental state and can be debilitating to the point that one should not drive.
Susan, I am going to put Mumphy and JaneE posts here. I will also send them a private e-mail and give them a heads-up to contact you. They will be able to help. They are thoroughly familiar with Stage IV and I defer to them and their expertise. If you aren't familiar with the private e-mail, find the "CSN Home" site, click on it, and up will come a section where you may send others an e-mail. Just be certain to address your letter to the "User name" and not the name they sign at the bottom of their letter. If I send you an e-mail addressed to "Susan", the site will not recognize it. If I address it to "MAE66", it will indicate that your message has been sent.
Hope this has been helpful and that you will know for certain if your husband is a possible candidate, but time is of the essence since he is nearing the last of his treatments.
Any physician of your choosing will want to see complete records of treatment to date, so gather all that and have it with you when you go for a second opinion. My insurance company, BC/BS, paid for a second opinion and Dr. Luketich "DID NOT" require a referral from another doctor. I simply called up and told them what I needed and the rest is history.
I pray that you have "missed something" and that your husband can be a candidate for surgery after all.
But I think you have a lot more questions and researching to do before consigning your husband to "never having a chance for an operation". Perhaps someone else can relate to your husband's condition and have some answers for you. I hope you are missing something. I hope there is a chance your husband can have an operation if the cancer is now contained completely within the Esophagus.
Praying you'll find answers.
William W. Marshall
AKA "William66"
Virginia Beach, VA 23464
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Copies of Mumphy's posting here of November 4, '09.
November 4, 2009 - 8:35pm
Nice to meet you!
Hi,
My husband was diagnosed in May with Stage IV, He had hard time with his chemo and was in the hospital 3 times during his treatments. He was very fatigued and also had difficulty with concentration. He did not have any radiation. He just kept himself busy and when he was tired he rested. You have to remember that his body was not ment to have the poison for lack of a better word so it will take some time for his body to bounce back.
Chemo effects everyone differently so I have been told many, many, times by his Dr's.The last time he was in the hospital they did a chest x-ray and noticed that his tumor looked like it was shrinking. They held his last chemo treatments and did a PET scan and it did so we had a meeting with the surgeon and he said O.K. lets do surgery. We are now 2 weeks post surgery and he is doing fine the tumor is gone along with most of the lymph nodes. He will still have to have follow up radiation and maybe a round or two or radiation just to make sure.
Any way my point is if this was his HOPEFULLY his last round of chemo you may be able to find out if it has done the job it was supposed to do if it has then you husband will start to feel alot better in a few weeks. I don't know if they think he is a candidate for surgery now, but if he wasn't he may be now I know of some people that were told that they would not be able to have surgery and right now as I am posting this are going home from the hospital and had surgery.
Never give up HOPE!
I hope this helps. -Kath
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Copy of "Jane E2366" posting of November 4, '09 here:
November 4, 2009 - 8:35pm - fatigue
Hi Susan,
We are in the same "club." My husband was dx in March with stage iv EC. Mets to lymph nodes, lung, liver, and peritoneal cavity. Chemo was his only option. Went through 4 rounds in the hospital.....in remission after the 2nd round.
Now he is on Xeloda (oral chemo) to try to keep it in remission. He also started Herceptin treatment last week. When he takes the Xeloda, he takes it for 2 weeks and is off 1 week. The last few weeks he is exhausted.....just as bad as when he was having the chemo in the hospital. We go to a support group on Wed and he really had to force himself to go today. I intend to ask the dr about the Adderall (thanks Sherri for the tip.) For the longest time, my husband could not read, watch TV....never mind try to watch a movie. That has gotten a bit better. One good thing was he has never had a problem eating...other than no appetite and mouth sores after chemo.
Sorry I have no magic solution.....I wish you the best.
Try to stay strong and I will keep you and your husband in my prayers.
Jane
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