ashleyc
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Dianne-
I dot not have CC, my mother did. However, I can relate in this topic odly because I too took Reglan. When I had my daughter I for some reason quick producing breastmilk and the doctor prescribed me Reglan. It was supposed to help increase breastmilk. So very odd, I know. However, I took it for 2 weeks hoping my system would adjust and it would work. I was absolutley miserable, with diziness, blurry vision, nausea and just yucky. It was so bad, I could sit 5 feet from the tv and couldn’t make out what was on. I couldn’t drive and just felt completely out of it. I did quit taking it and felt much better. Not long after that was when the commercial came out that Reglan was linked to Tardive Dyskensia (not sure on spelling). Anyway, sorry if this didn’t help at all, I just know I didn’t feel even close to “normal” when I took it for the short period of time. Hope you can get the information you’re looking for.
God Bless,
AshHi Kristin–
I like you was young and only 25 at the time my mother was diagnosed 2 years with stage IV CC at the age of 46. At the time she was given a year to live max…something you do not want to hear but I understand where you come from wanting to know how much time you have to enjoy and soak up every last moment and memory. As many of said, there are several on this website who have survived this awful disease and taken to treatment very well. Chemo effects everyone differently. Please please know you are NOT alone through this journey. This website has so many amazing and wonderful people that you’ve never met, yet you feel you can tell them anything. Their words of encouragement and advice helped me feel comfort during many times of need. Like some of them said, writing in a journal can help. I know it did me. It allowed me to “talk” to someone, mostly my mother without breaking down in front of her when I needed to be strong. I still continue to write in and “talk” to her a year after her passing. I’ll be praying the good Lord gives you the strength and comfort you need during this difficult time.
God Bless,
Ash4Neil–
My experiences were very similar with my momma. She started to get sick back in 2001. She always knew she had a gut feeling that something wasn’t right. After many doctors appointments and stilly rememedies to try and fix the pain she was feeling – nothing. No one ever thought to do a ct scan except only of her brain…they thought she was crazy. She was diagnosed stage 4 in August 2010 and died in August 2011. She spent much of her time in the hospital also being treated as a room number, multple attempts at tube feedings, needles left in the bed, being too rough with external drains so they get ripped out, and just a waste of their time because she was dying anyway. It is hard to describe the helpless and agry feelings when your loved one has to experience this and you just have to sit and watch. The only comfort I find is knowing that she is pain free and dancing on the streets of gold in Heaven. I pray that you will find peace and comfort through these times until you see Neil again. The times when it gets hard…just know that you’re not alone! God Bless – Ashley
Chrissy–
I too know how you are feeling. I lost my sweet mother who would have been 49 on mother’s day this year. You story is pretty similar to mine. You sound like a wonderful daughter and I’m sure your momma was a lucky woman with a good heart. I pray that the good Lord gives you peace and comfort.
Hopeful daughter–
I have been exactly where you are, a hopeful daughter. Life, stress, money, the feeling of drowning in everything that you have no control over can make you feel like you’re in pain, lost and spinning out of control. There are things than WE cannot control and as much as we want to fix it or find a way, the one and only thing I have found to do…is like you said…Trust in the good Lord. He will never fail us and will give us the strength to move forward. Philippians 4:13. You are doing your very best and although it may not seem like enough, just remember that faith and the grace of God can take you a long way. Take some deep breaths and enjoy each and everyday!
Ashley
mn–my heart goes out to you and your family. I was just in a similar situation with my momma and I know how it feels as a daughter to want the fix-all for momma with no more tears and enjoying as much as possible. It’s hard to do when they are in so much pain and you feel helpless. My mother had upper and lower abdominal pain, especially after her liver resection in April 2011. She was on a fentanyl patch and dilaudid for pain. I believe they would give her morphine as needed for breakthrough pain. She was on a routine schedule for lactulose for both her ammonia levels and to help her have a bm. It helped a little with the ammonial levels but not much with the bm. They would do scans of her abdomen and found nothing, do more scans and find nothing. Couldn’t figure out why she kept complaining of horrible pain. In July 2011, she starting vomiting for 4 days straight and couldn’t keep anything down. She had a small bowel obstruction and it had COMPLETELY closed shut. She had to have emergency surgery before it ruptured. Have they done anymore scans or xrays of her bowels to be sure?
I am sure that you are doing your best and that’s all that we can do. Stay strong and keep us posted.
God bless,
AshSissy–
I have to say when I read your post I was a littl taken back just by your name. That is what my momma always called, she never referred to me as Ashley (unless she was upset).
In regard to your question, my mother was in a similar situation. The Gem/Cisplatin did work for her a little but not to the degree of shrinking them like they neeeded for surgery and in addition, new ones surfaced. She started chemo in August of 2010 and had a chemoembolization treatment around February 2011. It was our only other option at the time. She was always in pain due to the size of her tumors so it was hard for her to tell how much was the treatment. However, I can say that the treatment took a major toll on her body (she was only 46 at the time) and I don’t think she recovered well. They told us that it didn’t work only 2 weeks after the procedure and now I’m learning that it could take a couple of months to actually know the results. Also, the surgeon assumed that it worked because she was able to have a 70% liver resection in April 2011. Like all the others say, it varies from person to person and their situation. Mom was in the situation that it was her only option, so she took it. Please keep us updated on your journey.God Bless,
AshKatie–
this happened to my mother. She was in tremendous pain even before her chemoembolization treatment. After the CE treatment it did seem to get worse. They did scan after scan and test after test to see what it could be but nothing ever showed up. We were told that it was because her tumors were so large, the biggest being 9cm x 9cm pressing on the other organs and then the treatment from the CE could be causing the pain as well. She was also on Dilaudid but a PCA pump, which also didn’t help. She was also on a Fentanyl patch every 72 hours. Unfortunatley nothing ever seemed to help the pain and they said that there was nothing else to give her. She had a 70% liver resecetion and the pain continued, mostly under her rib cage and she had a hard time breathing like something was pressing on her lungs. Once again, nothing showed up.
Also, we were told that my mothers stage IV CC was inoperable too. After 6 months of chemo and one chemoembolization treatment, she had the liver resection and “supposedly” all the cancer was gone. Our oncologist told us that it was impossible for the surgery, and the surgeon didn’t agree. Worth getting a second opinion.
I will pray for you and your family. I know that it is tough watching your mother suffer and feeling so helpless. Stay strong!
Ash
Well, mom has been in the hospital for a month and half now. To say the least I am floored in what our health”care” has become. Our doctors have agreed that they dont know what they are doing. They are not on the same page. Today, we had a scheduled appointment with BOTH of them to sort everything out…so an hour past the appointment we are informed that they are not showing up. We also found out that after mom’s 75% liver resection, the surgeon left behind 2 tumors on her remaining bile duct. He apologized for “failing” to mention that. She now weighs 98 pounds and is starving to death, literally. They are giving her tube feedings of Jevity, but they just now realized that for the FIFTH time, her tube was not in the right spot. Therefore, she was vomitting all the jevity back up and receiving no nutrition. They have hooked her back up to the suction tube..the jevity goes in through the feeding tube and comes right back out with the suction tube, makes a lot of sense huh? My mother is the sweetest angel anyone could ever meet. Not ONCE has she complained about anything since being in the hospital. Today, when the doctor informed us that it was time to go home with hospice, that this was the end of the road she broke down and cried. She said “I have been fighting so hard, how come that its not enough.” Helplessness is beyond how I feel. She’s not ready to give up and throw in the towel. Her bilirubin levels are now a 30, ammonia and WBC’s are soaring. She has SEVERE abdominal pain and they can’t figure out what it is, nor do they care. In my opinion they look at her like she is a lost cause. I never thought one could feel so many emotions at once. She’s not a quitter but we just told her, that if Jesus or the angels come to see her and are ready that its okay to go home. Thank you all for your support and thoughts in this journey. Its been a long road to say the least and I’m ready for momma to smile and be happy again.
Jennifer–
Since this post, mom has not been back to San Antonio. She was admitted to the hospital for pneumonia 5 weeks ago and is still in the hospital. When she was admitted here, her oncologist came by to see her in the hospital. My dad brought up the treatment she was getting in SA. The doctors there informed us that they were going to do radiation and chemo and then surgery to resect the tumors. Needless to say, that is not what she was sent there for. Her oncologist was livid..they (Doctors in SA) had lied to him also. We were all told that she would be entering a “clinical trial.” That was not the case. Her levels were all too high and she wasn’t strong enough to be on the trial. Our local oncologist at home said that mom would never survive radiation and that she would have died in San Antonio. He left the decision up to us, but we felt very betrayed. The oncologist called and cancelled all future appointments for mom. I have learned through this, that you have to be an advocate for you loved one fighting this disgusting disease. If not, the doctors will (at least in our case) will not fight for the patient either. We didn’t have a good “hopeful” experience with San Antonio in the first place..we should have known with the bad feeling not to go back.
Lainy–
I’m not sure that there is any other help close by, as we were told by moms oncologist here (Amarillo)that there is nothing else he can do, same from the doctors at Baylor in Dallas. The place is throuh the Univeristy of Texas Health and Science Center at San Antonio. I appreciate your help.
Ashley
Thank you all for your responses. I have had the BRAC Analysis testing done last week and should know the results within 10-14 days. I’m a little nervous even though if I do test positive for either of the gene’s I know it doesn’t mean that I do have cancer. Just a little scary thinking that my daughter may be going through exactly what I am going through right now with my mom. Its a horrible feeling. I hope you all have a blessed day!
Ashley
Kathy–
I was told by my doctor that I should have this testing done. I have numerous family members who have had uterine, colon and breat cancer. This BRCA testing, tests to see if you carry the gene BRCA 1 and BRCA 2. If you do carry the gene BRCA 2, the information I received said that you are at a greater risk for developing, CC, colon, pancreatic and stomach cancer. Because cancer is extremely high in family and the average age of diagnosis is 40. If you have a high family history, most insurances will cover the cost ($4,000) test.
jathy1125–I am curious on how you were able to get a liver transplant after being told that it was inoperable. Dr’s told us that mom would not receive a transplant…and now they have even ruled out surgery. What type of treatment did you have during your clinical trial. We should find out today what the next steps are for mom..if any.
Update on Mom:
I talked to dad this afternoon and they are not performing the Cyberknife as planned. They have decided that chemoembolization is the best route to go. Has anyone had this performed? She will go at the end of the month to have it done on the left lobe and I believe 2 weeks later, the right lobe. From what I read, it seems to be a good path to take. Dad did inform me that the doctor said it would just “buy us time.” Not what I wanted to hear.
