neuroendocrine small cell carcenoma

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  • joann p
    joann p Member Posts: 50
    #82
    Sooze3821 said:

    Trials
    I fully understand that when you see these amazing results that there is ALWAYS the other side of the coin. It's a gamble no matter how you look at it.

    I am slightly miffed that we are not seeing the oncologist every time. The RN doesn't have the knowledge he has. We will be saving all discussions of treatments for when we see him in a few weeks. We have a CT Scan next Monday and pray for good results,the last one was VERY encouraging.

    P.S. Today the woman next to us in the infusion room was told a new drug had been approved for her type of cancer, I don't know what it was (the drug or cancer type). She was there to start a randomized trial and the doctor came and told her this drug was approved like literally 10 minutes ago and she was going to get the treatment. That's how on top of things they are. I am comforted by that.

    Oncologist vs Nurse Practitioner
    Sooze,
    When Frank goes for his chemo, we see either the oncologist or the NP. Mostly, the pattern has been oncologist on day 1, the long day, then the on day 2 and 3, we see the NP. Our NP's are wonderful and very very positive!!!!! When we went to start session number 4, (after the CT scan showed that the tumors has shrunk and the lung blood clots were found,)she said that the shrinking of the tumors were excellent and Frank was doing great!!!! Encouraging or what!!!!!
    Well Sooze, I know all too well about the hair issue. This weekend was Frank's " maiden event post chemo with no hair." We went to a wedding of a good friend of our's son's. Frank was EXTREMELY apprehensive.. not knowing how people will react to him without hair,( he refuses to wear a hat, only when we are by the pool.)Well, about and hourand a half into the reception, while having a slow dance, he begn to cry and he told me he was so glad he went to the wedding, that at first he wass scared, but most of the people told me I look fantastic.. boy was I happy to hear that!!!
    Now to go onto something else... since your husband has been diagnosed with cancer, do you feel like everytime you watch TV, read the newspaper or listen to the radio, you hear or read about some famous person dying from cancer, studies on places were cancer is highest, or if you have been diagnosed with cancer go to the cancer center!!???? Is it me, or am I just more in tuned to this??? Everyday, with everything I do, it seems that the word cancer appears and it really, really really sucks... not only at home, but at my job also!!!!!! Some day's are so depressing!!!!
    Prayers and strength your way,
    Jo
  • Sooze3821
    Sooze3821 Member Posts: 50
    #83
    joann p said:

    Oncologist vs Nurse Practitioner
    Sooze,
    When Frank goes for his chemo, we see either the oncologist or the NP. Mostly, the pattern has been oncologist on day 1, the long day, then the on day 2 and 3, we see the NP. Our NP's are wonderful and very very positive!!!!! When we went to start session number 4, (after the CT scan showed that the tumors has shrunk and the lung blood clots were found,)she said that the shrinking of the tumors were excellent and Frank was doing great!!!! Encouraging or what!!!!!
    Well Sooze, I know all too well about the hair issue. This weekend was Frank's " maiden event post chemo with no hair." We went to a wedding of a good friend of our's son's. Frank was EXTREMELY apprehensive.. not knowing how people will react to him without hair,( he refuses to wear a hat, only when we are by the pool.)Well, about and hourand a half into the reception, while having a slow dance, he begn to cry and he told me he was so glad he went to the wedding, that at first he wass scared, but most of the people told me I look fantastic.. boy was I happy to hear that!!!
    Now to go onto something else... since your husband has been diagnosed with cancer, do you feel like everytime you watch TV, read the newspaper or listen to the radio, you hear or read about some famous person dying from cancer, studies on places were cancer is highest, or if you have been diagnosed with cancer go to the cancer center!!???? Is it me, or am I just more in tuned to this??? Everyday, with everything I do, it seems that the word cancer appears and it really, really really sucks... not only at home, but at my job also!!!!!! Some day's are so depressing!!!!
    Prayers and strength your way,
    Jo

    The one we see is an RN
    On the Chemo week we see the RN on 1st day then NO ONE the rest of the week. If we have questions they are available of course. Usually we see the doctor after a CT scan has been done; on the following chemo week. So we may have seen him Three times so far. It's not that she isn't positive sometimes. We usually have to ask a question to get a response, such as,"In your opinion, is Michael doing above average, average, or below average?" Then she will say above average. What I object to is when she says things that make us feel depressed as hopeless, such as "The cancer WILL be back." Maybe that's true, but we all kinda know that do to what type it is. There is nothing wrong with a little hope. As the oncologist says, "After remission, we'll see what kinda mileage we get out of this." That leaves it open to hope.

    Yes, it's like when you are pregnant, everywhere you go or everything you see relates to pregnancy. LOL I think it seems that way because it's the focus of your universe at the moment.

    Michael has had experiences like Frank did. Bless their hearts. At the beginning he was sure everyone was giving him "the look". Now he has accepted it and loves the compliments on his hat. He never even wore a ball cap before this. :)

    My heart and prayers go out to all,
    Sooze'
  • AnneLene
    AnneLene Member Posts: 27
    #84
    mr steve said:

    Not seeing the Doc
    We saw the onc everytime we there, even if it was only in the infusion center she would always stop by and check on us. We did go thru the nurse the PA then the doc.

    Trials are tricky at times due to the fact that certin criteria has to be meet. My wife went thru 2 of them. The first one there were great results, (no tumor growth for a year) but she could not tolerate it a 2nd time, when the tumors started to grow again, due to the side effects of the chemo and the 2nd trial there were no results. The thing to remember is that every person is different and the results that we had does not mean the your's would be the same because some of the other's had better and worse results.

    Mr. Steve
    Hi, unfortunately this is a part of the sicknes. The chemo will work for one or may two times before it stopp working. I have seen things in the hospital and met people with a destiny with much worse results, regarding to this kind of cancer.

    I dont think I will get read of the cancer, but what I am hoping for is to find a way to make them freezing the growth of the tumors. And as you said I may will be inside/outside the criteria. Anyhow a good results can make me live for an other year, and then hopefully without to much treatment.

    I like miracles, so you never know ;-)
  • AnneLene
    AnneLene Member Posts: 27
    #85
    Sooze3821 said:

    The one we see is an RN
    On the Chemo week we see the RN on 1st day then NO ONE the rest of the week. If we have questions they are available of course. Usually we see the doctor after a CT scan has been done; on the following chemo week. So we may have seen him Three times so far. It's not that she isn't positive sometimes. We usually have to ask a question to get a response, such as,"In your opinion, is Michael doing above average, average, or below average?" Then she will say above average. What I object to is when she says things that make us feel depressed as hopeless, such as "The cancer WILL be back." Maybe that's true, but we all kinda know that do to what type it is. There is nothing wrong with a little hope. As the oncologist says, "After remission, we'll see what kinda mileage we get out of this." That leaves it open to hope.

    Yes, it's like when you are pregnant, everywhere you go or everything you see relates to pregnancy. LOL I think it seems that way because it's the focus of your universe at the moment.

    Michael has had experiences like Frank did. Bless their hearts. At the beginning he was sure everyone was giving him "the look". Now he has accepted it and loves the compliments on his hat. He never even wore a ball cap before this. :)

    My heart and prayers go out to all,
    Sooze'

    Everyting in life is related to cancer.....
    I am the one with cancer and also I think it is to much focus on the cancer. It is like it eaten up my life. I got a death sentence from the doctors, but in the other end:

    -I dont have any bieffects from the chemo
    -I dont feel sick at all (no sign of illness so fare)
    -The chemo help a lot and prob. will help me to a longer life

    My hair is gone, but my wig is looking ok. In addition to the wig I also use hats, hijabs and a kind of headdress (new ones like skaters use - it`s nice on the beach). You find photo in my blog ;-)

    But I am still my self, I have hundreds of good friends out there in addition to a beatiful daugther, a life to enjoy with a lot of humor and warmness, music, sport (what is possible), men still turned around after me (with wig - they like hair hehe..), so way focus on cancer...??? Like you I also start to feel that the cancer taking over and in my case it is no reason for that. If it is true that my life is so short as they tell me, why cant I live and give a dam in the cancer?

    I dont know if I am able to manage, but atleast I will give it a try, and I will try hard to get the cancer out of my mind and start living ;-)
  • AnneLene
    AnneLene Member Posts: 27
    #86
    Sooze3821 said:

    The one we see is an RN
    On the Chemo week we see the RN on 1st day then NO ONE the rest of the week. If we have questions they are available of course. Usually we see the doctor after a CT scan has been done; on the following chemo week. So we may have seen him Three times so far. It's not that she isn't positive sometimes. We usually have to ask a question to get a response, such as,"In your opinion, is Michael doing above average, average, or below average?" Then she will say above average. What I object to is when she says things that make us feel depressed as hopeless, such as "The cancer WILL be back." Maybe that's true, but we all kinda know that do to what type it is. There is nothing wrong with a little hope. As the oncologist says, "After remission, we'll see what kinda mileage we get out of this." That leaves it open to hope.

    Yes, it's like when you are pregnant, everywhere you go or everything you see relates to pregnancy. LOL I think it seems that way because it's the focus of your universe at the moment.

    Michael has had experiences like Frank did. Bless their hearts. At the beginning he was sure everyone was giving him "the look". Now he has accepted it and loves the compliments on his hat. He never even wore a ball cap before this. :)

    My heart and prayers go out to all,
    Sooze'

    Everyting in life is related to cancer.....
    I am the one with cancer and also I think it is to much focus on the cancer. It is like it eaten up my life. I got a death sentence from the doctors, but in the other end:

    -I dont have any bieffects from the chemo
    -I dont feel sick at all (no sign of illness so fare)
    -The chemo help a lot and prob. will help me to a longer life

    My hair is gone, but my wig is looking ok. In addition to the wig I also use hats, hijabs and a kind of headdress (new ones like skaters use - it`s nice on the beach). You find photo in my blog ;-)

    But I am still my self, I have hundreds of good friends out there in addition to a beatiful daugther, a life to enjoy with a lot of humor and warmness, music, sport (what is possible), men still turned around after me (with wig - they like hair hehe..), so way focus on cancer...??? Like you I also start to feel that the cancer taking over and in my case it is no reason for that. If it is true that my life is so short as they tell me, why cant I live and give a dam in the cancer?

    I dont know if I am able to manage, but I will try hard to get the cancer out of my mind and start living ;-)
  • Sooze3821
    Sooze3821 Member Posts: 50
    #87
    AnneLene said:

    Mr. Steve
    Hi, unfortunately this is a part of the sicknes. The chemo will work for one or may two times before it stopp working. I have seen things in the hospital and met people with a destiny with much worse results, regarding to this kind of cancer.

    I dont think I will get read of the cancer, but what I am hoping for is to find a way to make them freezing the growth of the tumors. And as you said I may will be inside/outside the criteria. Anyhow a good results can make me live for an other year, and then hopefully without to much treatment.

    I like miracles, so you never know ;-)

    More good news!
    Michael's CT Scan came back great! We were a little nervous after having been sent home from Chemo a few weeks ago due to low white blood cell count. It moved everything back a week. So further shrinkage of the tumors and no progression!!! With #5 & 6 treatments left to go, Michael has returned to work part time and we both think it's having a good effect. He is feeling great, a little more tired than before all this began but things are lookin' good!
  • AnneLene
    AnneLene Member Posts: 27
    #88
    Sooze3821 said:

    More good news!
    Michael's CT Scan came back great! We were a little nervous after having been sent home from Chemo a few weeks ago due to low white blood cell count. It moved everything back a week. So further shrinkage of the tumors and no progression!!! With #5 & 6 treatments left to go, Michael has returned to work part time and we both think it's having a good effect. He is feeling great, a little more tired than before all this began but things are lookin' good!

    Link to the University in Uppsala (Sweden )....
    Hi, first of all i like good news and it seems that your husbond also start to feel better (you feel better if you move around, not to much and not to less ;-)).

    I been looking to different treatment and so fare I find actually Germany, Switzerland and Sweden as possibilities so fare (UK and Switzerland I dont know that much about, but Germany and Sweden I am quite shore about). Here is the link to the University in Uppsala (outside Stockholm ;-)).

    I am looking forward to see what they planning for treatment as line two.... ;-)

    http://www.medsci.uu.se/research/Cancer/Endocrine+oncology/?languageId=1
  • joann p
    joann p Member Posts: 50
    #89
    Sooze3821 said:

    More good news!
    Michael's CT Scan came back great! We were a little nervous after having been sent home from Chemo a few weeks ago due to low white blood cell count. It moved everything back a week. So further shrinkage of the tumors and no progression!!! With #5 & 6 treatments left to go, Michael has returned to work part time and we both think it's having a good effect. He is feeling great, a little more tired than before all this began but things are lookin' good!

    FANTASTIC!!!!!
    YEAH MICHAEL!!!!!!
    SO happy to hear the great news.. seems like Michael and Frank are on the same track... We finish session #5 tomorrow.. CT scan after 3rd session showed shrinking of all tumors with the biggest in the left shoulder lymph node, it seems the tumors in the liver were very samll to begin with, no other organs affected. As I have said before, unfortunately, with my job, I deal with this alot.. on Mon, I was the intact nurse, i had a 54 year old man who had colon CA with met's to liver, given 6 months to live. After I triaged him, I broke own, cried like nobody's busines... it seems to be taking a toll on me, even though I try not to let it get to me, but, I am only human... the only saving grace is that Frank is doing great... and as I told him, this is a disease for the rest of his life, just like diabetes, heart failure or hepatitis, it lies low, then rears it;s ugly head, but we will fight it tooth and nail!!!
    Hugs, prayers, and positive vibs,
    Jo
  • Sooze3821
    Sooze3821 Member Posts: 50
    #90
    joann p said:

    FANTASTIC!!!!!
    YEAH MICHAEL!!!!!!
    SO happy to hear the great news.. seems like Michael and Frank are on the same track... We finish session #5 tomorrow.. CT scan after 3rd session showed shrinking of all tumors with the biggest in the left shoulder lymph node, it seems the tumors in the liver were very samll to begin with, no other organs affected. As I have said before, unfortunately, with my job, I deal with this alot.. on Mon, I was the intact nurse, i had a 54 year old man who had colon CA with met's to liver, given 6 months to live. After I triaged him, I broke own, cried like nobody's busines... it seems to be taking a toll on me, even though I try not to let it get to me, but, I am only human... the only saving grace is that Frank is doing great... and as I told him, this is a disease for the rest of his life, just like diabetes, heart failure or hepatitis, it lies low, then rears it;s ugly head, but we will fight it tooth and nail!!!
    Hugs, prayers, and positive vibs,
    Jo

    FYI

    http://www.ncbi.nlm.nih.gov/pubmed/14997763

    This is a link that clinically describes almost to a "T" what Michael has. Although the treatment is slightly different. I found this highly encouraging. There is other information on this site and perhaps you can find your own specific situation.
  • Sooze3821
    Sooze3821 Member Posts: 50
    #91
    joann p said:

    FANTASTIC!!!!!
    YEAH MICHAEL!!!!!!
    SO happy to hear the great news.. seems like Michael and Frank are on the same track... We finish session #5 tomorrow.. CT scan after 3rd session showed shrinking of all tumors with the biggest in the left shoulder lymph node, it seems the tumors in the liver were very samll to begin with, no other organs affected. As I have said before, unfortunately, with my job, I deal with this alot.. on Mon, I was the intact nurse, i had a 54 year old man who had colon CA with met's to liver, given 6 months to live. After I triaged him, I broke own, cried like nobody's busines... it seems to be taking a toll on me, even though I try not to let it get to me, but, I am only human... the only saving grace is that Frank is doing great... and as I told him, this is a disease for the rest of his life, just like diabetes, heart failure or hepatitis, it lies low, then rears it;s ugly head, but we will fight it tooth and nail!!!
    Hugs, prayers, and positive vibs,
    Jo

    FYI

    http://www.ncbi.nlm.nih.gov/pubmed/14997763

    This is a link that clinically describes almost to a "T" what Michael has. Although the treatment is slightly different. I found this highly encouraging. There is other information on this site and perhaps you can find your own specific situation.
  • joann p
    joann p Member Posts: 50
    #92
    Sooze3821 said:

    More good news!
    Michael's CT Scan came back great! We were a little nervous after having been sent home from Chemo a few weeks ago due to low white blood cell count. It moved everything back a week. So further shrinkage of the tumors and no progression!!! With #5 & 6 treatments left to go, Michael has returned to work part time and we both think it's having a good effect. He is feeling great, a little more tired than before all this began but things are lookin' good!

    Hey!!!
    Well, last week we finished round 1, session 6 of chemo. He is still on Coumadin and his level's are finally theraputic. He goes for a repeat CT scan on the 19th, and by the result's of the scan, the next course of treatment will be planned, whether we will have 2 more treatments or just evaluated bi-monthly, our oncologist play's caution to the wind and won't solidify a plan of action without the CT results, which is fine with me. Out oncologist is very happy with how Frank is tolerating the chemo, and that he doesn't show any signsor symptoms of cancer, hopefuly this is a good sign!!!! How is Michael doing??? Is he still into his hats????
    Sending prayer's your way,
    Jo
  • Sooze3821
    Sooze3821 Member Posts: 50
    #93
    joann p said:

    Hey!!!
    Well, last week we finished round 1, session 6 of chemo. He is still on Coumadin and his level's are finally theraputic. He goes for a repeat CT scan on the 19th, and by the result's of the scan, the next course of treatment will be planned, whether we will have 2 more treatments or just evaluated bi-monthly, our oncologist play's caution to the wind and won't solidify a plan of action without the CT results, which is fine with me. Out oncologist is very happy with how Frank is tolerating the chemo, and that he doesn't show any signsor symptoms of cancer, hopefuly this is a good sign!!!! How is Michael doing??? Is he still into his hats????
    Sending prayer's your way,
    Jo

    Much the same
    Glad to hear everything is progressing well on your end! We are a week behind you so we finish up today with a Neulasta shot. Then like you say, we will be waiting for the results of the Pet/CT Scan. Our doctor is confident Michael will be in remission but he makes us aware it will most likely come back. We aren't so sure. We have been doing a lot of research and once it goes into remission we will be using diet to boost his immune system and hit it with antioxidants. Time will tell. He has said Michael was above average in response to chemo and after the first week, he too, tolerated it very well. He has been back to work almost full time, and the only indication he has cancer is hair loss, and occasional fatigue.

    Michael is still sporting the hats and likin' it but he said he will be glad to get some hair back. What is coming back so far has been white and he's not happy about that. :)

    Prayers all around for all of us!
  • joann p
    joann p Member Posts: 50
    #94
    Sooze3821 said:

    Much the same
    Glad to hear everything is progressing well on your end! We are a week behind you so we finish up today with a Neulasta shot. Then like you say, we will be waiting for the results of the Pet/CT Scan. Our doctor is confident Michael will be in remission but he makes us aware it will most likely come back. We aren't so sure. We have been doing a lot of research and once it goes into remission we will be using diet to boost his immune system and hit it with antioxidants. Time will tell. He has said Michael was above average in response to chemo and after the first week, he too, tolerated it very well. He has been back to work almost full time, and the only indication he has cancer is hair loss, and occasional fatigue.

    Michael is still sporting the hats and likin' it but he said he will be glad to get some hair back. What is coming back so far has been white and he's not happy about that. :)

    Prayers all around for all of us!

    Yeah!!!
    Well, when I read your post, it is like it's a mirrow. Both Michale adn Frank are progressing well, at the same level!!!! For that I am so happy for you!!!!! PLEASE tell me what diet you will be using... I will follow the same. Today I had a little melt down, but I bounced right back.... Please I really want to keep in touch with you!!!!! I never found out where you live!!!! We live in New Jersey, in a small town of Verona...it's like Mayberry RFD, everyone know's everyone.. a nice little town...

    Hugs, prayers and life your way,
    Jo
  • Sooze3821
    Sooze3821 Member Posts: 50
    #95
    joann p said:

    Yeah!!!
    Well, when I read your post, it is like it's a mirrow. Both Michale adn Frank are progressing well, at the same level!!!! For that I am so happy for you!!!!! PLEASE tell me what diet you will be using... I will follow the same. Today I had a little melt down, but I bounced right back.... Please I really want to keep in touch with you!!!!! I never found out where you live!!!! We live in New Jersey, in a small town of Verona...it's like Mayberry RFD, everyone know's everyone.. a nice little town...

    Hugs, prayers and life your way,
    Jo

    I agree
    These guys are doing about the same! Even to save our lives I don't believe we could do a completely raw vegetarian diet. We are researching foods that boost the immune system and have antioxidant properties. In addition we are going to try to keep his system as alkaline as possible. It's just a matter of researching which foods do this and adding them to your diet. On the flip side, the ones that don't have these qualities should be consumed in smaller quantities. That's all we will be doing. We want to get the news after the Pet and CT scan before we start. On the 24th we will be talking to the Doctor again and hopefully we will be done with that whole routine for awhile!


    Anne,I know English isn't your first language but did you mean to say your tumors are increasing in size, even after chemo? I sure I read that wrong. My prayers are with you. Keep us posted!
  • AnneLene
    AnneLene Member Posts: 27
    #96
    joann p said:

    Hey!!!
    Well, last week we finished round 1, session 6 of chemo. He is still on Coumadin and his level's are finally theraputic. He goes for a repeat CT scan on the 19th, and by the result's of the scan, the next course of treatment will be planned, whether we will have 2 more treatments or just evaluated bi-monthly, our oncologist play's caution to the wind and won't solidify a plan of action without the CT results, which is fine with me. Out oncologist is very happy with how Frank is tolerating the chemo, and that he doesn't show any signsor symptoms of cancer, hopefuly this is a good sign!!!! How is Michael doing??? Is he still into his hats????
    Sending prayer's your way,
    Jo

    Hi, both of you! I hope everything is ok. I got the results from the first round with chemo and the result: decreasing (haha....;-))) of the tumor size app. 76 to 83% ;-)))

    So I am not dead tomorrow, and will hanging on for a wile;-))))

    Hope for good results for all of us, with love!!!

    Anne Lene
  • joann p
    joann p Member Posts: 50
    #97
    AnneLene said:

    Hi, both of you! I hope everything is ok. I got the results from the first round with chemo and the result: decreasing (haha....;-))) of the tumor size app. 76 to 83% ;-)))

    So I am not dead tomorrow, and will hanging on for a wile;-))))

    Hope for good results for all of us, with love!!!

    Anne Lene

    Well Anne,
    It seems out happiness was short lived. Frank went for a repeat CT scan on Wednesday after, 3 weeks after what we thought would be his last session, and low and behild, the tumors in his liver did not shrink, but went back to their original sizes of 2.0cm, small in nature. Needless to say, this took us for a loop, and I had a complete meltdown in the oncologist's office. The good news, if you can find any, is that there are no NEW lessions anywhere and that the lession in the shoulder is the same. So therefore, next Fri, we start a new chemo drug called Irinoteca. This drug doesn't kill the cells or shrink them, they kinda keep them in "check," they stop the DNA of the cell from producing new cells. I am depressed over the new findings, but the oncologist is still optimistic.... How this is finding you in good spirtis!!!!!
    Sending prayers your way,
    Jo
  • Sooze3821
    Sooze3821 Member Posts: 50
    #98
    joann p said:

    Well Anne,
    It seems out happiness was short lived. Frank went for a repeat CT scan on Wednesday after, 3 weeks after what we thought would be his last session, and low and behild, the tumors in his liver did not shrink, but went back to their original sizes of 2.0cm, small in nature. Needless to say, this took us for a loop, and I had a complete meltdown in the oncologist's office. The good news, if you can find any, is that there are no NEW lessions anywhere and that the lession in the shoulder is the same. So therefore, next Fri, we start a new chemo drug called Irinoteca. This drug doesn't kill the cells or shrink them, they kinda keep them in "check," they stop the DNA of the cell from producing new cells. I am depressed over the new findings, but the oncologist is still optimistic.... How this is finding you in good spirtis!!!!!
    Sending prayers your way,
    Jo

    Much the same story for us
    Different drug. *sigh* The drug of choice for Michael is called Topotecan. And it does much the same thing as the drug Frank is taking. It was my understanding that it would shrink the tumors though, otherwise....why do it? Once you stop the infusion and it's not keeping it in check any more, then what? Our oncologist is optimistic as well but he's not the one with cancer. We are trying to stay positive and it's a little easier because this drug is not as hard on Michael as the cisplaton. Like Frank it didn't move anywhere else so we have to count our blessings. Hugz and prayers to all of us. Pray for a happy ending.
  • AnneLene
    AnneLene Member Posts: 27
    #99
    joann p said:

    Well Anne,
    It seems out happiness was short lived. Frank went for a repeat CT scan on Wednesday after, 3 weeks after what we thought would be his last session, and low and behild, the tumors in his liver did not shrink, but went back to their original sizes of 2.0cm, small in nature. Needless to say, this took us for a loop, and I had a complete meltdown in the oncologist's office. The good news, if you can find any, is that there are no NEW lessions anywhere and that the lession in the shoulder is the same. So therefore, next Fri, we start a new chemo drug called Irinoteca. This drug doesn't kill the cells or shrink them, they kinda keep them in "check," they stop the DNA of the cell from producing new cells. I am depressed over the new findings, but the oncologist is still optimistic.... How this is finding you in good spirtis!!!!!
    Sending prayers your way,
    Jo

    Status and my swedish project ;-)
    I am still under treatment with Cisplatin + Etoposide and hopefully is still working and shrinks the cancer more. I will have a new CT in October/November and after that we will see if I got two new treatments or not. Either the chemo will stop working or my body will say stop to the treatment.

    I found a project in Sweden how I looking into in the moment and are in contact with the professor and the campaign leader in UK. So in the moment I try to make a strategy to see if it is possible to raise 11. Million Swedish krones….hehe. It`s keep me busy and I am quite enthusiastic about it. The project idea is to use virus to get read of the cancer cells. The project is ready to be tested on humans (that is difficult in Scandinavia). It is some small parts how missing before I can go, and hopefully I place them this week. Is like a kind of “win or disappear” in more than one way ;-)

    Here is the link:
    http://www.uu.se/en/support/oncolytic

    Keep the cancer away as fare it is possible! This cancer is ugly and I cross the fingers for all of us. Please let us keep in touch because I believe it is no the battle start, for all of us. Big hug Anne Lene
  • southerngal608
    southerngal608 Member Posts: 1
    #100
    My mother has been battleing Neuroendocrine Cancer since March
    Hey, I have never met anyone who has had or has Neuroendocrine cancer. She has an even more rare form of it as the tumor was on the wall of her vigina. The dr's said that NET cancer was very rare but cancer of the wall of the vigina was even more rare! I would like to talk to other who have or are dealing with NET cancer. My mother goes for the results of her final pet scan tomorrow and she is scared to death!
  • Sooze3821
    Sooze3821 Member Posts: 50
    #101
    AnneLene said:

    Status and my swedish project ;-)
    I am still under treatment with Cisplatin + Etoposide and hopefully is still working and shrinks the cancer more. I will have a new CT in October/November and after that we will see if I got two new treatments or not. Either the chemo will stop working or my body will say stop to the treatment.

    I found a project in Sweden how I looking into in the moment and are in contact with the professor and the campaign leader in UK. So in the moment I try to make a strategy to see if it is possible to raise 11. Million Swedish krones….hehe. It`s keep me busy and I am quite enthusiastic about it. The project idea is to use virus to get read of the cancer cells. The project is ready to be tested on humans (that is difficult in Scandinavia). It is some small parts how missing before I can go, and hopefully I place them this week. Is like a kind of “win or disappear” in more than one way ;-)

    Here is the link:
    http://www.uu.se/en/support/oncolytic

    Keep the cancer away as fare it is possible! This cancer is ugly and I cross the fingers for all of us. Please let us keep in touch because I believe it is no the battle start, for all of us. Big hug Anne Lene

    I have heard of this!
    Ple4ase keep us posted about any news. I believe they are afraid in America to try anything new. It's very sad that every time we heard of something like this and we talk to our doctor about it, they shot it down.

    The is a site on the internet called Kickstarter, and I know there are others that will help you raise money. Good Luck Anne. Hugs and Prayers!

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