Pet scan update on my dad

LivingFaith Member Posts: 74
edited March 2014 in Esophageal Cancer #1
We got the results of my dad's PET scan last week. It's taken me some time decide how I feel about it. I wasn't there to hear it from the dr and able to ask questions. Dad is stage 4. After 2 rounds of chemo and 2 months they said there is little change so they are calling it Stable. The primary tumor had grown a little in length (define little!) but no new mets.
At first I was upset that the chemo wasn't working and they then gave him a 3rd round of the same stuff. My mom was kind of throwing fits too with the dr about changing chemo and he looked right at her with a hushed tone to his voice and said,"Stable is good at this point." Since then I have decided to look at the glass as half-full instead of half-empty. We had hoped for shrinkage but it could have been a lot worse. After reading some of your posts and doing some research I understand that it may take a couple of treatments before a response is seen.

The flip side to this is my dad feels like hell! The first 2 rounds of chemo he had little to no side effects. This 3rd round has been terrible. I don't think it is the chemo so much as it that darn stent he got last month. That thing is the devil! He is in so much pain. When I went to visit last weekend I could hardly stand to see him suffer. I told them if they did not take my advice about seeing another dr I was going to call up his and raise heck to the point they would be so embaressed they would have to move!

FINALLY! They went to my dad's Primary dr and got the pain issues addressed. I told them that he may have a "team of drs" but nobody was being the "coach". They needed someone who knows and cares about my dad personally. Someone to help navigate between the different drs. I am very relieved about their appointment. He gave them his personal cell #, email, and told them to call him anytime. The dr is going to call my dad to check in every week too. He gave him enough scripts for pain meds to kill a Rhino! He promised not to let my dad suffer. This was his honor to care for him until the end.

Two months ago our lives changed from this Beast. It started out with guns a blazin, my dad was going to be the miracle to beat stage 4. Little did we know that the Beast has a mind of it's own. One that causes so much pain and suffering it could bring the strongest man I know to his knees in tears. My dad still talks the talk a little about beating the Beast but his voice weaker and hoarse, the fire in his eyes is more like a pilot light, he is so tired and beat down. I won't, but part of me wants to tell him, you don't have to try a be hero here. You already are my hero. I won't think or feel any less of you if you want to stop. I want you to be free from pain more than I want you to stay with us a few extra months. I feel terrible for even thinking these thoughts but had to get them off my chest.

Thanks for listening my EC friends. I keep praying for everyone on this board daily.



  • BMGky
    BMGky Member Posts: 621
    Suggestions from experienced EC Discussion needed.
    Prayers for your father and your family. Chemo does get rough. He may need fluid. My husband became very dehydrated and the fluid IVs helped. I hope at some point you can get a j tube, if medically appropriate. It works so well for nutrition, and if I can learn how to do it, anybody can. This is how my husband kept his strength. Hopefully, the experienced EC members will get online and tell you their thoughts as they know so much more. Continue to hang in there. It is hard. Wishing you the best.
  • sal314
    sal314 Member Posts: 599 Member
    Oh Deb, I So Understand!
    I'm starting to get more and more depressed about my dad's situation. Since being diagnosed in March,(stage 4 with liver mets and now spine mets) it's been such a roller coaster ride! He had a horrible time after his first two chemo treaments. He developed 3 blood clots. Two in the lungs and one in his calve. Then he had this terrible shoulder pain, which the dr.'s said was due to the radiation treatments. So, he went on morphine for awhile! The side effect of that made it even worse. Thankfully he was able to quit the morphine after about a month.
    We all thought for sure it was the beginning of the end! Then he bounced back and seemed for the most part his old self. We all were and still are amazed. He has no swallowing or eating issues at all! The main tumor growth is on the outside of the esophagus, so in that respect it's been a total blessing.

    He just started his new Taxol chemo on Monday for the spine mets. SO far, so good. He had his treatment on MOnday and went to work on Tues. and Wed.!! The many is such a fighter. But you can see the defeat in his eyes and his whole demeanor has changed. It's just so incredibly sad to watch! I really HATE it!!

    WE just have to keep positive, stay strong and cherrish every day they are still with us!
    I'll be praying for you, your family and dad!!

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  • sandy1943
    sandy1943 Member Posts: 824
    Deb, Telling your dad how
    Deb, Telling your dad how you feel is not wrong. This is a positive thing . So often a patient endures suffering because of their loved ones. We need to let them know how we feel and that it's ok with us what they choose to do with their treatment.It can help them to make positive decisions based on how they feel.
    Praying for your dad and family
  • K_ann1015
    K_ann1015 Member Posts: 500
    I don
    t know if I

    I don
    t know if I have posted on your thoughts--I haven't been on here as much lately---but that is more of a "hopeful" thing..... My dad was dx stage 3 8/4/09---but there was always this one US tech that saw a "suspicious node" in the liver that made me it really stage 3 or is it 4? My dad - too was always so strong---The point is----for you I, for one think that it is OK to have the "conversation" to simply support your dad in what HE thinks is best. "He dad---we're with you--no matter what you decide"-- "We love you"

    Now I am not to that stage--so easier said than done.. just wanted you to know that I (being a daughter) thinks your instincts are ok!
    God BLess