lornadoone

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  • in reply to: Introduction / Welcome #83924
    lornadoone
    Member

    Wow Duke! This is amazing. Thank you so much for taking the time to post so much valuable information. I don’t know how I missed it but it is a must read for everyone on this site.

    in reply to: Question?? #85159
    lornadoone
    Member

    John Theurer Cancer institute

    in reply to: Question?? #85157
    lornadoone
    Member

    The ct scan was not scheduled until 3 months after chemo started which will be early january. We decided to pay for an ultra sound on our own. The onc was not aware that we did the ultra sound until after the fact. The onc said he has only has 3 treatments and that is way too early to see any results. He wants us to stay the course and do a scan in january after 1st cycle is complete. We are so confused. It’s is like choosing door one or two and if you choose wrong it is your life.
    Thank you so much for your responses. I truly value all of your opinions and knowledge.

    in reply to: Question?? #85154
    lornadoone
    Member

    Hi Marian,
    The doctor said it is just too early. 3 treatments is not enough. And sometimes they can enlarge before they shrink. Dont know what to believe.

    in reply to: Question?? #85152
    lornadoone
    Member

    Thanks Crissie. I guess we were just so anxious to see if the tumors shrank and it was a blow to get the results. We will keep the faith and continue to fight on.
    Love and prayers!

    in reply to: Question?? #85151
    lornadoone
    Member

    Hi Marion,
    The tumors were 3.7cm and 1.3cm in September. After only 3 rounds of Folfox we decided to do an Ultra sound. I know the ultra sound is not as accurate as a CT scan but we were anxoius to see results. Sadly, the results were not good. Tumors grew to 7cm and 3cm. I know we have many treatments to go but shouldnt we have seen shrinkage even after 3 treatments?
    Scared out of our minds.
    Lorna & Matt

    in reply to: Question?? #85149
    lornadoone
    Member

    Hi Marion,
    The tumors were 3.7cm and 1.3cm in September. After only 3 rounds of Folfox we decided to do an Ultra sound. I know the ultra sound is not as accurate as a CT scan but we were anxoius to see results. Sadly, the results were not good. Tumors grew to 7cm and 3cm. I know we have many treatments to go but shouldnt we have seen shrinkage even after 3 treatments?
    Scared out of our minds.
    Lorna & Matt

    in reply to: Gemcitabine question #80960
    lornadoone
    Member

    Marion,
    Thank you for your response. I am definitely going to look into it.

    Lorna
    xo

    in reply to: Gemcitabine question #80958
    lornadoone
    Member

    Hi Lainey,
    Lorna is my real name and Doone is a nickname I had growing up. But, it was more for the cookie Lorna Doone rather than the movie. Now I’ll have to check out the movie!

    Marion, the oncologist wants to do the chemo first and see where it takes us and in 3 months when he gets a scan we will go from there. But, thank you for mentioning it. We also consulted with Mayo clinic and sent all his records there and they concur that folfox is the way to go for now.
    Can anyone give me info on the genetic testing? Does it have to be done on the new tumors that are now present? I don’t understand why they didnt do it in the first place when he had the resection done since there is such a high recurrence.
    I also want to say that although I don’t usually post I read the site daily and have learned so much from you all . Thank you for all that you do here it means so much. Peace and love to you all.
    Lorna

    in reply to: Gemcitabine question #80953
    lornadoone
    Member

    Hi Serena,
    So sorry to hear about your mom. I pray that whatever decision she makes will keep her with you for many, many years to come. My boyfriend decided to go with the chemo mainly because of the very high recurrence of this type of cancer as well as 1 lymph node involvement.
    He started on the Gem but only did 3 cycles because it was too hard on him. His white blood count and platlets were very low and never seemed to bounce back. Although he is very healthy, in the past year he has had back surgery, neck surgery and liver resection so i believe he never had time to recover before starting chemo.
    He also stuggled with the fact that the doctors said they have no evidence that adjuvent chemo will even be beneficial. So after 3 rounds and many, many hours of struggling with the decision he decided to stop the chemo this past June.
    On sept 5th he had his second scan since surgery and to our absolute horror it showed recurrence to the liver.
    So as you already know it is a personal decision and your mom has to do what she feels in her heart is best for her. I stand by my boyfriend and will be by his side through every step of this horrible unpredictable disease as I am sure you will be with your mom. God bless you both. Please keep us posted on what she decides and how she is doing.

    Lorna

    in reply to: Need Help/suggestions #81456
    lornadoone
    Member

    Thank you Lisa. I appreciate the response.

    in reply to: IIIntrahepatic post surgery…My story and welcome to it #81133
    lornadoone
    Member

    Hi iowagirl, My boyfriend only had the one tumor and there was no arteries involved and the tumor was easily removed. It was only attached to the gall bladder but the gallbladder was not infected by the cancer. He did however have 1 lymph node affected so i think that along with the high recurrence was the deciding factor. It’s hard because you are already feeling beat up fom surgery and then you get even more beat up with chemo. He must have said over and over ” i don’t understand why i need chemo if the doctors say I am now “cancer free”. The doctors told him if he were their son or relative that they would highly suggest him taking the chemo. My bf like you has always been overly educated when it comes to the medical field. When he or a family member is sick he will go full force on getting the best treatment and asking questions and getting the treatment needed. In this case, i think it was just too much of a shock and quite frankly too scary so i took on the role of searching the internet in the hopes of educatung myself. I must say that this site has been a tremendous source of information. It is real people living this and i am learning from their experiences.
    The chemo he is on is gemcitabine 3 weeks on and 1 week off, they also wanted to start him on Xoleda pill form 2 times a day one week on and 1 week off but due to the high stress level of my bf regarding the side effects they decided to wait after the 1 cycle of gem to see how he does before he starts the xoleda. His first treatment was 3/17 and other than some fatigue he did well. His white blood and platelets were too low on the folowing week so they did not give him chemo. Monday he will go back and hopefully his numbers have gone up but the only thing is he now has a cold. In the 15 years we have been together i do not recall him ever having a old. He is juicing 2 times a day and sticking to a high protein diet and i beleve that has helped him because although he has a cold he feels great otherwise.
    Good luck to you and may God be with you to help you make the right decision. The fact remains that with or wihout the chemo this nasty cancer can make an appearance. You have to do what you feel is best for you.
    BTW..he also takes a half xanax every now and then to take the edge off. The stress and anxiety alone can do you in.
    Let e know what you decide.
    Lorna

    in reply to: IIIntrahepatic post surgery…My story and welcome to it #81128
    lornadoone
    Member

    Hi Iowagirl and God bless you. I hope you find peace and pray that you are going to get through this. My Boyfriend has intra hepatic cc and had successful resection in January. He started chemo on March 17th and we can only hope and pray that it was the right decision and that this damn disease is gone for good. I have spent hours and hours researching this cancer and i can understand why you find yourself in tears, it is very scary.
    You are very lucky as my boyfrind is as well that you were able to have surgery with clear margins. They say it s the only chance for cure. Most find this cancer when it is so far along. God bless you and i pray that you will be one of the success stories and you like my boyfrend will be an inspiration to others.
    Lots of hugs,
    Lorna

    in reply to: My Introduction #80177
    lornadoone
    Member

    Hi Matt, Best of luck next week. I pray that your scans are clean and that you hear everything you need to give you some comfort. The anxiety and stress that comes along with this horrible disease must be over the top. My boyfriend Matt also had successful resection in January. However, he opted to take the chemo with the very strong recommendation of the surgeon and oncologist due to the high recurrence of this cancer. My boyfriend has also been a bit of a worrier especially regarding his health. I say a bit of a worrier but in all honesty he has major anxiety and in this situation it is warranted. I do believe that staying positive has so much to do with the healing process and i try to remind him everyday that everything will be ok and to stay positive. I know it is easy for me to say…right? God bless you and your family and please keep us posted.

    Lorna

    in reply to: New Member seeking advise #80861
    lornadoone
    Member

    Thank you all for the warm welcome and very helpful links. I am on this site daily and feel so inspired by all of you and the strength and courage you all have. My BF had his first dose of Gemcitabine on March the 17th and did really well. No side effects other than some fatigue. He did experience alot of pain between the shoulders on the 3rd day but not sure if it is related to the chemo. We went back on the 24th for his second treatment but platletts and white blood count was too low for chemo. So he will take the week off and see what happens next week. Any suggestions on raising the numbers? He is juicing 2 times a day and eating very healthy. He has always been health concious when it comes to his diet. Any suggestions on any supplements that may help?
    I appreciate any input. God Bless you all! xoxo

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