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Cancer Strikes Again

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

8 months after surgery to remove my husband's esophagus and pull his stomach up to make the new one, we learn the cancer is back. It is back at the connection site in the esophagus and is some lymph nodes on both sides of his neck, in the lining of his lungs and around his heart. We could not undersstand why in a matter of 72 hours he went from almost going back to work part time to now he can't catch his breath and is tired. Pulmonary doctor says he has scar tissue in the lungs from radiation so he can not do radiation again and he is too weak to have another surgery (his weight is 116). Tuesday (5/21) he started his first round of chemotherapy called Folfox and he will be re-scanned in 3 months to see if the check to see if the chemo is working or not.

Folfox is suppose to have some nasty side effects I read from sensativity to cold to the point if he drinks something cold it will feel like he is swallowing broken glass and grabbing things out of the frig will sting his hands so he will need to either wear gloves or have a pot holder available. He may also have burning sensations in his hands and feet, severe fatigue, nausea, vomiting, diarrhea or constipation just to name a few. We are being told it will take a few treatments for this all to set in. We know that the cancer will never be cured and we are being told it is not a matter of if the cancer will win it is a matter of when it will win. We will go through chemo until we realize he either can not physically handle it or the cancer is not responding. 

So disappointing that my husband was this close to getting back to some what of a life and now cancer has taken that away. I wonder when the chemo will do more harm than good and then wonder how the end will come for my husband. He was so so close to have to have cancer take it away..Damn it!

Keepinthefaith
Posts: 8
Joined: May 2013

christine so sorry, i know how discouraging to get good news then wam get horrible news we go thru that ourselves, we were told husbands cancer was almost gone chemo working reall good then he started having pain in his legs again doctor hurried him in for scans and they revealed radiation to the spine he had last feb. didn't do a thing, so now starting new chemo. I believe in the Lord so i pray, and i pray and pray some more, he went thru a period all he could do is cry, so i just read scripture to him it seemed to give us both peace. No one knows the outcome until it is over and it is all hard choices we have to make. He didn't want to take his chemo for a while so i just let him be let it process he started it tonight, see what happens.

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Thank you so much for your post. It seems all that we can do is pray pray pray that the good Lord has a plan for us all through this journey. Wish there was a book that told us how this all will go but there isn't so it is truly one day at a time.

You and your husband are in my thoughts and prayers that you continue to find the strength to go on. Crying is a wonderful thing and it is needed at times. I am just so sad that our husband's must endure this horrific disease and all we can do is the best we can to support and love them.

Please keep in touch.

Christine 

Ladylacy
Posts: 457
Joined: Apr 2012

So sorry to hear the bad news.  At his weight (my husband weighs not much more than at 6'4"), chemo will be hard on him.  Does he have a feeding tube?  If not this would be beneficial.  My husband has been fighting cancer coming up on three years.  First laryngeal, then spread to the cervical of his esophagus (rare) and now in his right lung as of January and reoccurred at the cervical of his esophagus.  He did have a complete laryngectomy in March 2011.  But when the cancer at the cervical of his esophagus (second primary) was diagnosed a year ago, surgery was out.  He did undergo another 35 radiation and 7 chemo treatments and for 3 months was NED but a follow up in January showed the spread and reoccurrence.  Only thing offered was chemo but my husband had already told me no more and he means it this time.

I can honestly say that without a feeding tube I seriously doubt he would be alive today.  Since January the only difference I see is low energy level (something he never had even at 73 when all this started) and more pain which is controlled by pain medication something he doesn't like to take and won't take it that often.  He doses more during the day.  Something he didn't used to do.  

As a caregiver I know how hard it is.  I know what it is like not to have patience sometimes when he won't take his medication I get mad at him because I don't want to see him suffer.  I have read too many on these boards who have suffered so much from taking chemo and I hope and pray your husband doesn't have this.  While I would love to have my husband for years to come, I don't want to see him suffer either.  It's like I tell people, I'm only along for the ride, he is doing the driving.  No we don't know when or how much time he has, doctors wouldn't say because they said they didn't know.  Only God knows so we take each day as it comes.

Wishing the best to you both -- Sharon

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Thanks for your post. When Mike was diagnosed in April 2012, the day before his 57th birthday, we had the power port and feeding tube (G-tube) put in and his weight did pretty good. He had surgery in August 2012 after having chemo and radiation and came home with a J-tube which he had until the end of 2012. The surgeon removed his entire esophagus and was able to use pull the stomach up to make the new esophagus without needing any other organs. Mike was and still is able to eat however it is not enough to maintain the weight and at this time, I am not sure another feeding tube is possible to have because his stomach is too small, it would defeat him eating to keep the esophagus open. We have to have his throat stretched every 3-4 weeks as it closes up so the surgeon is leary of having him dependant on a feeding tube for it will fill him up and he will lose his desire to eat. Also he runs a greater risk of infection on this new chemo so that is also a concern of the medical team.

The Folfox chemo is new and after 3 days of being disconnected from it, he is weak and tired. Today (Sunday) he is sleeping pretty much the entire day, the loose stools have started and he is hot and cold. We meet with the surgeon on Wednesday to discuss what stage the cancer is and if chemo is really worth doing. We have two weeks until the next chemo treatment so we will see if he gets better or worse as the days go by.

I pray that one day I wake up and look next to me and not see him breathing. I know that to many that sounds so mean and morbid but to see him suffer the way he is..truly heartbreaking. It tears me apart to watch him in pain and feeling like crap and right now his quality of life is a 2..today he rated it as a 0. His breathing is getting more difficult and we may be putting him on oxygen becasue the cancer is in the lining of the lungs and thanks to radiation, he has scar tissue in the lungs. He is 58 and says he feels like 98 so it makes me wonder how long he will continue chemo.

Please know that you and your husband are in my prayers and I hope that God sees fit to spare them both from the pain. It is truly one day at a time and prayers all day long. Keep your strength and be sure to take care of yourself.

Christine 

Ladylacy
Posts: 457
Joined: Apr 2012

Thank you for your response.  While surgery was ruled out for my husband once it was found at the cervical of his esophagus and then when it reoccurred after his second round of treatment, I always knew I didn't want him to have the surgery if it was offered but would have gone along with whatever he wanted to do.  My Aunt who was the same age as my husband had esophageal cancer (my mother's youngest sister and by that I mean 17 years younger and my husband is 7 years older than me).  She found a good battle for 3 -4 years.  We talked quite often on the phone when Joe was diagnosed with laryngeal cancer, she passed away before he was diagnosed with the cancer at the cervical of his esophagus.  She went thru so much, many rounds of radiation, chemo and then surgery.  Then it spread to her lungs.  She was never able to eat much after the surgery and had the feeding tube that went directly into her intestines and had problems with that but still used it up until the end.  I remember her telling me that enough was enough.  We didn't live in the same state but many states apart and we would also email each other.  

You are not horrible for feeling like you do because that is how I feel many times and since I can't hear my husband breathe since his laryngectomy many times I lay there just waiting for him to move and wondering.  This is such a beast and up until my sister was diagnosed with breast cancer no  one in my family had cancer, nor my husband's.  My sister is a 10 year survivor and doing good.  Since that time we have had prostate cancer, esophageal cancer, kidney cancer (youngest son at 41 had a kidney removed but doing good 4 years later), than my husband's laryngeal cancer, cancer at the cervical of his esophagus (rare) with spread to his right lung (yes biopsy confirmed), we just lost a niece on his side of the family to ovarian cancer and another one has breast cancer.  When I think back 10 years ago there was no cancer in my family or his family and I used to think how lucky we were not I know cancer can strike at any time and anywhere.

Wishing you and your husband the best -- Sharon

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Ladies, today was the first time I jumped over to the caregivers board. I am so sorry for the progression of your husbands disease. My biggest fear. I will pray so very hard for the both ofnyou and as always for all affected by this dreaded disease. I am amazed at your strength and courage. Also formyour ability to still reach out to others. Thanks

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

for your kind words and prayers. I have followed you some on the Esophageal board and you are facing your own set of hurdles but I am thankful for you sharing your story. Some days as you know can be good ones and then there those days(and please don't think I am heartless in saying this) but on those days, I just pray I would wake and he would peacefully go in his sleep. While this is my 5th time with a family member with cancer, it never ceases to amaze me how much I feel like this is the first time, but I am thankful for all the learning I have had over the years in this horrible disease in that I think mentally I am more prepared for the end than most may be. I would rather not have my husband here with us then watch each day as he struggles and he becomes less and less the man I used to know. But some how we find a way to go on to the next day and we take what we are given. 

Stay strong yourself and thanks for allowing us all into your life...makes me realize just how many of us are living this nightmare.

Christine

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

I have followed this thread, but this is my first comment. Losing my husband was the hardest thing I have ever been through. It was different than any of my other loses. In the end I, too, prayed for a quick, peaceful passing. I, too, thought I was ready. I really wasn't. Yes, we had said our goodbyes. I had assured him that I was a strong, independent woman and would be fine. Little by little, I am even becoming that woman. My prayers are with you now. I know how hard this time is. Blessings, Fay

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

I so sorry for the loss of your husband and I agree losing a spouse or a child are very different than any other loss. My dad died at the age of 46 in 1981, not from cancer but a sudden heart attak and I know the toll it took on my mom to lose not only the love of her life but her best friend. I know that when the time come for my husband, I really won't be prepared but to watch him suffer tears me apart for I know that when he does go, his pain will be over and he will be at peace. That will be my comfort for to see him suffer the way he is breaks my heart every day into a million pieces. 

You are stronger than you give yourself credit for if you stood strong with your husband being by his side, then he will stand strong with you from the clouds above and give you the strength you need to continue on in his memory. That is the love you continue to share as he lives on in you..in your heart. Never stop talking about him or to him for I believe that he hears you.

Take care of yourself and thank you for responding to my post. 

Christine

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Ladies, today was the first time I jumped over to the caregivers board. I am so sorry for the progression of your husbands disease. My biggest fear. I will pray so very hard for the both ofnyou and as always for all affected by this dreaded disease. I am amazed at your strength and courage. Also formyour ability to still reach out to others. Thanks

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