Mom with Stage 3 Stomach cancer with possible complications from chemo or surgery :((((((

montclair
montclair Member Posts: 11
edited March 2014 in Stomach Cancer #1
Hello everyone!

My mom was diagnosed with Stage 3A stomach cancer with 15 out of 22 positive lymph nodes about 2 and 1/2 months ago and had a total gastrectomy about 8 weeks ago. My mom had her first chemotherapy session on June 15th with Epirubicin/Cisplatin and also was taking 4 Xeloda pills a day up until last Sunday when she got very sicj with Nausea and extreme muscle pain an fatigue. I brought my mom to the cancer clinic she goes to and they gave her IV fluids and infusions of anti-nausea meds plus morphine for the muscle pain she was having. At one point they gave her to much morphine for her weak body to handle and she became unresponsive and her respiration and pblood pressure went down and after getting an injection of some other drug that supposedly would wake her up she was brought to the ER and then admitted to the hospital. Where she for 4 days and was released today on Friday July 2. The doctors thinks her symptoms are a combination of anxiety/depression and also possibly due to some scar tissue in her intestines which the gastrointestinal doctor tells us is common in post total gastrectomy surgery patients. Our oncologist says that he wont restart my mom on Chemotherapy until she starts to feel better within another week or so and that he is going to change her dosage or treatment regimen to hopefully better suit her. My mom was also given daily Neuprogen immune boosting injections this week while in the hospital since her white blood cells had fallen. I stayed with my mom in the hospital for 1 week after her total gastrectomy and have also stayed with her in the hospital this past week 24/7. I am just so depressed and starting to lose hope that my mom will be able to continue on with chemo/radiation. I had so much hope when my mom started chemo that hopefully based on the info I've read online and also the info given to us by my mom's oncologist that my mom had a 70% chance of her cancer not coming back after completing chemo/radiation. For my mom to have major problems already with chemo and to have to stop so soon has left me with very little hope. All the medical decision making in my family has been left on me since im the "MED STUDENT" in the family :((( I already have some regrets about my mom not getting chemo before surgery and now I have regrets about her taking these daily Xeloda pills since they also may be a contributing factor to her getting sick so soon after starting chemo and now I think maybe it would have been better for her to go on the 24/7 pump with fluorouracil. I dont know how I am going to live the next 5 years like this in fear for my mom's life and have lost much hope of her getting through chemo/radiation. :((((((((

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Hello Montclair and welcome
    Hello Montclair and welcome to you and your mom. My heart aches for you. You have all of this on your shoulders. I was a caregiver for my dad he passed away in March 2010 from esophageal cancer with mets to the liver. He too took xeloda. You have lots of unanswered questions. You need to write them all down and bring them to the dr. Find out what this new plan for your mom's treatment will be. Try not to do all of this on your own. Ask for help from your family and friends. We will always be here for you, we will be thinking and praying for you. Keep in touch.
    Tina
  • livestrong_fighter
    livestrong_fighter Member Posts: 39
    #3
    Be strong!
    Your mom will be in my prayer. Your mom's cancer stage and treatment regimen are same as mine.

    The treatment (ECF) + radiation are tough to swallow. I am at much younger age compared with your mom and still feel the effects from the treament.

    However, the first round chemo/radiation give your mom the best chance to "cure" the cancer. Let her take a break and find some other regimen that her body may tolerate better.

    Good luck!
  • wiveliscombe
    wiveliscombe Member Posts: 50
    #4
    hello Montclair
    I feel your pain, my husband was diagnosed with stage 3A stomach cancer in June 2009. He had his stomach removed and most of his esophagus. The first week of chemo destroyed his colon and so it was removed and the docs suggested no more chemo. He made itout of hospital and was on intravenous feeding for several months. It has been a long and hard road but today he is doing great. His last cat scan showed no progression of the cancer and he is gaining some weight and can walk a mile a day!!! His prognosis was 6-12 months but we kept positive thoughts and didn't give in. Just don't give up hope and try to take some pleasure ineach day with your Mum.

    You're in my thoughts
    Louise
  • liveinhope
    liveinhope Member Posts: 83
    #5
    Dear Montclair,I'm sorry to
    Dear Montclair,I'm sorry to hear you mother is having problems with chemo.Hope she is recovering now.From my son's experience I remember the severe muscle pain cleared as soon as the chemo was stopped.through that period we must have rubbed him with every oil anybody suggested.The oncologist refused to believe it was a side effect of the chemo and my son refused any oral or inj. pain-killer!
    Try and pull yourself out of this state of 'hopelessness'.Your parents need you to be strong.As a caregiver I have to remember it is primarily about my son,his life is at stake.On the 29th of this month it will be a year from his diagnosis and we will celebrate that we are all together.
    You and I may be doctors but few decision are solely ours.I could go on and on with the thought'why didn't i catch my son's illness earlier'but it wouldn't help him one bit.Do your best(and I think you are)and stay with that.
    Love and good wishes Nisha
  • happy77
    happy77 Member Posts: 9
    #6
    Hello Montclair
    Hi Honey, It seems like you have a lot on you and I know where you are coming from, about regretting your Mom not having treatment before her surgery, but I would like to ease your mind so you don,t have that guilt on you. I had a total gastrectomy last june and had chemo prior to having my surgery. The chemo was horrible and when they went to scan me again to see if the tumor had shrunk before my surgery, it actually got bigger, so it never helped to shrink the tumor. I went through all that treatment and suffered alot for nothing, so don't be so down on yourself. I had to make health decisions in the past for my parents and I know the feeling of how, maybe I should of done this and maybe I should of done that goes. Your Mom is so lucky to have you. My Daughter was such a great inspire to me. I also had non-hogkins lymphoma 9 years ago, so we have been through a lot. Trust in God. He is so Awesome!!!! Also let your Mom know to HANG IN THERE. I promise things will get better. There were times when I thought I was not going to make it. I am 14 Months out and would never even know that my stomach is gone. Let Mom know that the muscle pain will goe away after her treatments end.
  • gingercat33
    gingercat33 Member Posts: 10
    #7
    Don't stress too much.
    My mother also had chemo before her gastrectomy and the cancer spread with it. She was extremely disappointed as the chemo was very hard on her, (I'm sure it is with everyone). She is now generally disappointed with her whole experience and very depressed. But I know that she will pull through this. Food is difficult for her right now. Every time something good happens, no matter how small, make sure she is aware of it. My mother gets alkaline (bile) reflux, and we tried olive oil and lemon juice to dispel it this morning. Unfortunately she then got dry heaves and had some saliva come up, but the reflux went away! As far as I'm concerned, that is great news! My mother was in the hospital for 49 days and at times it looked very bleak. We stayed with her 24/7 for 3 weeks because the first hospital was so inept, but once she was moved to a better hospital, she has done better. And of course, now she is home. Hopefully your mother is home by now as well. We are in the same time line as you are (surgery was july 1), it sounds like. Let me know if you'd like to email or facebook, as we are going through the same thing.
  • montclair
    montclair Member Posts: 11
    #8
    gingercat33 said:

    Don't stress too much.
    My mother also had chemo before her gastrectomy and the cancer spread with it. She was extremely disappointed as the chemo was very hard on her, (I'm sure it is with everyone). She is now generally disappointed with her whole experience and very depressed. But I know that she will pull through this. Food is difficult for her right now. Every time something good happens, no matter how small, make sure she is aware of it. My mother gets alkaline (bile) reflux, and we tried olive oil and lemon juice to dispel it this morning. Unfortunately she then got dry heaves and had some saliva come up, but the reflux went away! As far as I'm concerned, that is great news! My mother was in the hospital for 49 days and at times it looked very bleak. We stayed with her 24/7 for 3 weeks because the first hospital was so inept, but once she was moved to a better hospital, she has done better. And of course, now she is home. Hopefully your mother is home by now as well. We are in the same time line as you are (surgery was july 1), it sounds like. Let me know if you'd like to email or facebook, as we are going through the same thing.

    Mom having Intense Pain 4 months post total gastrectomy :(
    Hello Everyone:

    Just wanted to update you all on my mother who was diagnosed with Stage 3A Stomach cancer back in April and had a Total Gastrectomy on May 5, 2010. After having to stop her second round of chemo after 1 week with Epirubicin/Oxaliplatin& 24/7 Flurouracil pump at the end of July my mom ended up in the hospital again for 1 week due to severe muscle leg pain and nausea. The doctors this time put her on a Fentanyl patch which only made things worse by decreasing her appetite even more and causing more nausea and severe constipation. Her oncologist tells us there is no signs of cancer so far with negative endoscopy biopsies, negative CAT scans, and Tumor marker levels of 0.25. Although her pain where her stomach like pouch was created which started 1 month ago when she got out of the hospital has not stopped and is worse after she eats something. I have to give her 2-4mg of Dilaudid every 3 hours although the pain seems to be slightly less the past few days but still has not gone away totally. I finally consulted with my moms surgeon who thinks the pain most likely is from scar tissue adhesions and hopefully this Tuesday when he comes back from vacation his nurse told me that he will have a meeting with my mom's oncologist and decide what to do in order to hopefully ends this pain in order to get my mom back on at least a low dose of chemo with flurouracil. My mom's oncologist says he wants to start on a low once a week dose of flurouracil and eventually hopefully increase the dose to a dose my mom can handle. At this point as my mothers primary caregiver I am completely exhausted mentally and physically and depressed to the point of hopelessness. I just cannot stand seeing my mother in this condition anymore. Even though her oncologist says that the good news is that there is no sign of cancer and he says it might not come back he is still apprehensive about giving her Chemo since she has not been able to handle it and only has gotten 3 and 1/2 weeks of chemo in total since the beginning of June and has now been off chemo for almost 7-8 weeks. Unfortunately I have read about all the percentages about the chance of my mothers cancer coming back with a stage 3A with 15 out of 22 lymph nodes being positive. I have read of a case on this forum of a woman who had stage 3A signet ring cancer who had a total gastrectomy and completed chemo/radiation 6 years ago and now works full time and eats everything. This one case is the only thing that gives me any hope for my mom. If anyone has suggestions or has any knowledge about scar adhesions causing this type of pain I would greatly appreciate it. Hope everyone dealing with this disease is doing well and hope you all beat this horrible disease :(
  • montclair
    montclair Member Posts: 11
    #9
    montclair said:

    Mom having Intense Pain 4 months post total gastrectomy :(
    Hello Everyone:

    Just wanted to update you all on my mother who was diagnosed with Stage 3A Stomach cancer back in April and had a Total Gastrectomy on May 5, 2010. After having to stop her second round of chemo after 1 week with Epirubicin/Oxaliplatin& 24/7 Flurouracil pump at the end of July my mom ended up in the hospital again for 1 week due to severe muscle leg pain and nausea. The doctors this time put her on a Fentanyl patch which only made things worse by decreasing her appetite even more and causing more nausea and severe constipation. Her oncologist tells us there is no signs of cancer so far with negative endoscopy biopsies, negative CAT scans, and Tumor marker levels of 0.25. Although her pain where her stomach like pouch was created which started 1 month ago when she got out of the hospital has not stopped and is worse after she eats something. I have to give her 2-4mg of Dilaudid every 3 hours although the pain seems to be slightly less the past few days but still has not gone away totally. I finally consulted with my moms surgeon who thinks the pain most likely is from scar tissue adhesions and hopefully this Tuesday when he comes back from vacation his nurse told me that he will have a meeting with my mom's oncologist and decide what to do in order to hopefully ends this pain in order to get my mom back on at least a low dose of chemo with flurouracil. My mom's oncologist says he wants to start on a low once a week dose of flurouracil and eventually hopefully increase the dose to a dose my mom can handle. At this point as my mothers primary caregiver I am completely exhausted mentally and physically and depressed to the point of hopelessness. I just cannot stand seeing my mother in this condition anymore. Even though her oncologist says that the good news is that there is no sign of cancer and he says it might not come back he is still apprehensive about giving her Chemo since she has not been able to handle it and only has gotten 3 and 1/2 weeks of chemo in total since the beginning of June and has now been off chemo for almost 7-8 weeks. Unfortunately I have read about all the percentages about the chance of my mothers cancer coming back with a stage 3A with 15 out of 22 lymph nodes being positive. I have read of a case on this forum of a woman who had stage 3A signet ring cancer who had a total gastrectomy and completed chemo/radiation 6 years ago and now works full time and eats everything. This one case is the only thing that gives me any hope for my mom. If anyone has suggestions or has any knowledge about scar adhesions causing this type of pain I would greatly appreciate it. Hope everyone dealing with this disease is doing well and hope you all beat this horrible disease :(

    Scar tissue Adhesions in Stomach like pouch Cause of Daily pain?
    Does anyone know if scar adhesions at the site of the stomach like pouch created after a total gastrectomy can cause the daily pain which my mother has been suffering for the past 1 month which started 3 months after her surgery. I would greatly appreciate if someone has any knowledge and advice about my mom's situation.
  • gingercat33
    gingercat33 Member Posts: 10
    #10
    montclair said:

    Scar tissue Adhesions in Stomach like pouch Cause of Daily pain?
    Does anyone know if scar adhesions at the site of the stomach like pouch created after a total gastrectomy can cause the daily pain which my mother has been suffering for the past 1 month which started 3 months after her surgery. I would greatly appreciate if someone has any knowledge and advice about my mom's situation.

    My mom also had adhesions
    My mom also had adhesions and a stricture that caused a blockage. A second surgery was necessary and they had to remove more of her intestine. My mom was already thin before the surgery and is now very thin. She says that it feels like her intestines are just hanging from her esophagus, which they are. She has no fat left to cushion or support her insides. I wonder if this is what is causing your mom's pain? In the last week her dry heaving has gotten more frequent. Does this happen with your mom? I'm assuming the doctors have done a scan with dye to see if your mother has a blockage, and if not you might request one. My mother had 17 of 17 removed lymph nodes test positive for cancer, so I know how you fee. I share caretaking responsibilities with my mother's boyfriend, and it is very hard. Its a 24 hour job, even with help, so I know you must be tired. Also, if your unhappy with the attention your doctor is giving your mother, find another one. We did and we are much happier and he is much better at explaining things to us.

    This is hard. Probably one of the hardest things we will ever do. But stay upbeat. Be understanding, but be upbeat. It will get better.

    I will add that we haven't start chemo back yet because she is too weak. Did your mom have taste issues between the chemo's? Or still have them now?

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