My Mom Has Stage 4 Ec

Ok I looked at the message board and see lots of ppl that seem very knowledgeable.  My mom is 56 and was just diagnosed with stage 4 EC.  It is also in her left lung, but very small (.77mm).  The dr is saying the chemo and radiation will be more aggressive now.  Does that mean she will be more sick feeling and lose her hair?  Were any of you able to work through your treatment or were you too tired?  They are also saying that they will now not remove the esophagus because the cancer has metastized (sp?).  Why is that?  Even if it's such a small spot?  I hope someone can help answer my questions.  My mom is my only parent left and we live next door to her and are very close!! I just need some reassurance that this is all going to be okay!!  Thank u!!!

First off, I'm very sorry that your mom has this disease.  But I also want to give you hope.

My husband is 64 years old and has EC, stage IV (just like your mom).  He was diagnosed December 21st, 2006.  Tomorrow we will be leaving for a cruise!

I cannot tell you that it was an easy road.  Harley (my hubby) was very, very sick at the beginning and also through the first 2 months of his treatment (chemo - carboplatin infusion and Xeloda chemo by mouth).

By the first part of April Harley started feeling much better.  His appetite was so much better, and he has finally regained the 35 pounds that he lost when he was so sick.

The chemo was not difficult at all for Harley - he didn't lose his hair (there are different chemo drugs for different cancers - some will cause the hair loss - others it doesn't affect the hair follicles).

Please read this to your mom because there is hope.  Harley's cancer had spread to his liver and the tumors were very large.  His last CT scan showed the tumors greatly reduced and the tumor in the esophagus is almost gone.  In fact the oncologist told us that Harley is now in "partial" remission :-)

The one thing that Harley did was to stay as active as possible.  He is retired, so work was not a problem, but he still walks our dog every day.  He works in the garden and since the diagnosis, his faith in God has come back.  I truly believe in the power of prayer and if you and your mom do pray, now is the time to pray and ask all of your family and friends to pray too. 

One chemo nurse told us that if we give up, we are allowing the cancer to win.  She told us to stay active, eat as often as possible, even if it's just a pudding.  Try to put somethink in your mom's tummy about every 2-3 hours.  It will help keep her hydrated and will also help fight the cancer.

Love and hugs to you and your mom.  It can be a rough road ahead, but please know that there are miracles and they do happen.  Also, this is a great message board and there are wonderful people here who can answer your questions or just "talk".

Azzie

Thank you so much for your response!  It helps to know that she is going to be ok.  We completely believe in prayer and have a huge prayer group going for her.  So your husband did not have to have surgery either?  I don't understand why they don't do surgery on a stage 4?  Your right it is a hard road, but i'm just glad we have he diagnosis and she can begin her treatment.  Where else was your husbands' cancer located?  Thank you for taking the time to answer my questions!

Hi,

Just a quick reply as harley and i are leaving for our trip today!

Apparently surgery is not an option when the cancer reaches stage IV.  That is because it has already spread to other areas.  In Harley's case, it had spread to his liver (numerous tumors in the liver), two small spots on his lung, and cancer in the lymph nodes.  Then the esophagus/stomach junction - that was quite large when first diagnosed.

All of the tumors have shrunk dramatically - to the point where the oncologist told us that harley is now in "partial remission"! :-)

Prayer is what kept us going and also what helped heal Harley.  Send out requests to all of your friends, relatives and other prayer groups for prayers for your mom. 

The first few months will be the worst, but once she starts treatment, she should start to feel better.

Gentle hugs,

Azzie

I am so sorry to hear about your mom. My mother was diagnosed 12/06 with stage 3. She could not have the surgery either, which I am thankful for. I believe that surgery would have killed her. She was 75 when diagnosed. She received chemo and radiation. Her last check up showed no sign of cancer. She is going to have another CT scan this Tuesday so I will be holding my breath once again. This is a very tough road. My mother lives with me and my husband and she is my best friend. She had some very rough times including a couple of hospital stays and she could barely get out of bed by the time her treatments were over.

  I am not saying this to scare you. Just being honest. The thing is, now to look at her you would never know what she went through. She did not lose her hair either and her oncologist told her she most likely would. My mom being older going through this could have made it tougher also. Seeing her go through this sure makes me thankful for the way she is now . NEVER take good days for granted !

  Remember on the bad days you will get through it and keep reminding your mom. My mom is my only parent living also. My dad died when I was 4. 

   I wish you and your mom the best and will add you to my prayer list. Please keep us informed. People on this board really do care. I know it has helped me more than I can say.  Lots of thoughts and prayers to you and your mom,

                                                                         Pat 

Hi Meg_erin - I am glad you have found this board, but sorry you had a reason to.  Let me first say the people on this board are the most heroic, compassionate people you will ever meet.  I actually lost my Dad to the first round of chemo. He was stage IV with mets to the regional lymph nodes and slight mets to the lungs.  Personally, I think he had the enzyme deficiency that doesn't allow the body to ever breakdown the toxins in the chemo drugs (specifically the 5FU).  For my Dad's situation, I did consider it divine intervention though.  For others, however, I am amazed at how many long term survivors of Stage IV diagnosis are out thereand doing great! !  Some with surgery and some without.   Harley is fabulous and Pat's Mom, although Stage III, still serious, has done fantastically!  Also, if you go on Cathy's EC Cafe, there are many long term survivors (Stage IV).  I never post on Cathy's Ec Cafe, but I get the daily digest of posts and there are many patients posting on there about their experience and supporting each other and when you read their info, you 'll see some of them were diagnosed surprisingly long ago.  I think in general, the surgery is not offered to stage IV patients because of the mets.  The surgery is VERY difficult.  I think the percentage of patients that don't survive the surgery is somewhere around 23%.  Although, they now have more than one surgery to offer, it is still a VERY tough surgery with a hard, slow recovery (for the most part).  I think the idea behind the surgery in an earlier stage is that with the surgery  the patient has a good chance of being cancer free following the surgery.  If someone has mets elsewhere, then they will not be cancer free even with the surgery and again, it's not an easy surgery.  Sometimes in lower stages (III or II) if the patients overall health is bad, heart, other illnesses or conditions, they may not offer the surgery either.  I have seen people on the boards that were originally diagnosed as stage IV and after aggressive chemo and radiation, were re-stage to stage III and then offered the surgery!.  So, every case is different.  Also, if the facility where you are is not an experienced cancer facility, they may offer a different protocol then the experienced cancer facilities.  At any rate, it is good they are offering aggressive chemo and radiation.  My Dad, for some reason, was not offered any radiation as part of his plan even before they started, they didn't seem to think they would do any radiation, although they did mention maybe if he did real well with the chemo, they might have offered some targeted radiation for the tumors in the esophagus.  the main thing is they are willing to treat aggressively, which gives your mom a real, honest fighting chance!!  Hang in there and dig your heels in and get ready for a fight against this beast.  Fighting for you will range from just sitting quietly next to her during infusions, to physically helping her with whatever she needs, to questioning the doctors if something doesn't sound right to you, to just letting her vent, to you going out somewhere by yourself and yelling and cursing at the heavens.  But no matter what you do, know that your heart will guide you to being the support system your mom needs.  the patients are definately the brave, courageous warriers in this fight, but, we, the loved ones are definately the wind beneath their wings - the soldiers fighting along with them.  We are pivotal to them.  It is obvious you are a loving, kind, daughter and you will do all the right things.  Also know, we are ALL here for you.  Anytime, don't hesitate to call on all of us on the board - we will be there for you :-)   karen

To all of you who have answered my questions I appreciate your support!  It's nice to have nice loving people who have been through this and can be called upon to answer questions and support us newbie's.  My mom will be starting chemo tomorrow and see the radiologist in the afternoon.  She had her port-a-cath and feeding tube put in yesterday and is home recoping from that!  Thanks again and I will keep you updated!!

that's great she's starting tomorrow!  We will all be praying for her!  Please keep us posted on her progress!  God speed - karen

Well things didn't go as planned!!  My mom started vomiting  yesterday afternoon and we ended up taking her back to the hospital this morning.  She had had her feeding tube ang port a cath put in on monday and just wasn't doing well!  Hopefully it gets better. My aunt and grandma are with her because I have a 3 month old and couldn't go.  We have rescheduled for next monday and tuesday!!

thaht's okay - this way she can have a little healing at both sites and be a bit stronger to start - that is probably a very good thing to wait just a little while :-)   keep us posted!  karen