neuroendocrine small cell carcenoma
Comments
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Blood ClotsSooze3821 said:Good to hear!
That's wonderful news about the CT scan. Are the blood clots a related thing or is it just as you said a hiccup? How long does he have to stay in the hospital?
We are coasting along until next week and the 4th round.
Anna, be sure and let us know about your ct scan!
Sooze,
Blood clots are a normal side effect from chemo. They are small and Frank came home yesterday on Lovenox shots only 2 times and then Coumadin with repeat labs on Fri to see if the meds are working.I have toi tell you an amzaing story. I was taking care of a patient in the ED yesterday whose grandmother had the same exact cancer as our husbands, but the funny thing is, she had the same docotr as I, Although she lost her battle 2 years ago, diagnosised 5 years before that, I know that they have made much more advacne with the treatments, so it doesn't bother me when I heard she had passed. Now the other thing is that this patient does medical research for cancer... amazing the things he was telling me... Hope all is well with you and yours. keep up the fight, we are all in this together!!!!
Jo0 -
That is good news!joann p said:Blood Clots
Sooze,
Blood clots are a normal side effect from chemo. They are small and Frank came home yesterday on Lovenox shots only 2 times and then Coumadin with repeat labs on Fri to see if the meds are working.I have toi tell you an amzaing story. I was taking care of a patient in the ED yesterday whose grandmother had the same exact cancer as our husbands, but the funny thing is, she had the same docotr as I, Although she lost her battle 2 years ago, diagnosised 5 years before that, I know that they have made much more advacne with the treatments, so it doesn't bother me when I heard she had passed. Now the other thing is that this patient does medical research for cancer... amazing the things he was telling me... Hope all is well with you and yours. keep up the fight, we are all in this together!!!!
Jo
Please share some of the things this person told you about what research they did. It's never ending process to gain information.0 -
That is good news!joann p said:Blood Clots
Sooze,
Blood clots are a normal side effect from chemo. They are small and Frank came home yesterday on Lovenox shots only 2 times and then Coumadin with repeat labs on Fri to see if the meds are working.I have toi tell you an amzaing story. I was taking care of a patient in the ED yesterday whose grandmother had the same exact cancer as our husbands, but the funny thing is, she had the same docotr as I, Although she lost her battle 2 years ago, diagnosised 5 years before that, I know that they have made much more advacne with the treatments, so it doesn't bother me when I heard she had passed. Now the other thing is that this patient does medical research for cancer... amazing the things he was telling me... Hope all is well with you and yours. keep up the fight, we are all in this together!!!!
Jo
Please share some of the things this person told you about what research they did. It's never ending process to gain information.0 -
this is the transcriptSooze3821 said:That is good news!
Please share some of the things this person told you about what research they did. It's never ending process to gain information.
This is the transcript of the show he did, I will send you the link,
jo
as we have been telling you here tonight, there is some good news to report in the fight against cancer, an experimental treatment for leukemia is having extraordinary results beyond any expectations. it's small so far but the results are big enough to get out to the world and tonight as our chief science correspondent robert bazell reports, if it hadn't been for one woman who suffered a loss, this very promising research might not have happened.
bill ludwig says doctors tell him without the experiment treatment he would have had only weeks to live.
i'm in full health, no cancer in my system.
he has gotten the experiment treatment. the results are so spectacular that many believe it could mark the beginning of a major advance in cancer treatment.
each of those patients, a one or two of tumor was eradicated.
it removes the blood cells and -- attach to and kill cancer cells and return them to the patients in one infusion.
how good were those results compared to your expectations?
the results exceeded our expectations quite a bit. our entire team is really excited. and as well, the patients are excited.
why only three patients? the research concept was so new that neither the national cancer institute would fund it. she and her husband started a charity to fund new ideas after their daughter-in-law kim died of breast cancer .
we wanted to do something more, hoped to do something more.
so here it's just full of leukemia and now it's gone. money from the drug companies is pouring in, not just for further tests on leukemia patients but to try on patients with other cancers. for now, three lives have been saved. robert bazell , nbc news, philadelphia.
Hide transcript
Text: We're sorry. The text content of this page is no longer available0 -
Latest News On the Trialsjoann p said:this is the transcript
This is the transcript of the show he did, I will send you the link,
jo
as we have been telling you here tonight, there is some good news to report in the fight against cancer, an experimental treatment for leukemia is having extraordinary results beyond any expectations. it's small so far but the results are big enough to get out to the world and tonight as our chief science correspondent robert bazell reports, if it hadn't been for one woman who suffered a loss, this very promising research might not have happened.
bill ludwig says doctors tell him without the experiment treatment he would have had only weeks to live.
i'm in full health, no cancer in my system.
he has gotten the experiment treatment. the results are so spectacular that many believe it could mark the beginning of a major advance in cancer treatment.
each of those patients, a one or two of tumor was eradicated.
it removes the blood cells and -- attach to and kill cancer cells and return them to the patients in one infusion.
how good were those results compared to your expectations?
the results exceeded our expectations quite a bit. our entire team is really excited. and as well, the patients are excited.
why only three patients? the research concept was so new that neither the national cancer institute would fund it. she and her husband started a charity to fund new ideas after their daughter-in-law kim died of breast cancer .
we wanted to do something more, hoped to do something more.
so here it's just full of leukemia and now it's gone. money from the drug companies is pouring in, not just for further tests on leukemia patients but to try on patients with other cancers. for now, three lives have been saved. robert bazell , nbc news, philadelphia.
Hide transcript
Text: We're sorry. The text content of this page is no longer available
http://www.cancer.gov/ncicancerbulletin/051512/page5
I am greatly encouraged!!! The date on this article is May 15th 2012! I intend to ask our doctor about it on Monday.0 -
This thread is getting incredibly long!Sooze3821 said:Latest News On the Trials
http://www.cancer.gov/ncicancerbulletin/051512/page5
I am greatly encouraged!!! The date on this article is May 15th 2012! I intend to ask our doctor about it on Monday.
It's a good thing because people are posting but I wish we could archive some of the older posts.
Well, we were sent home yesterday because Michael's white cell blood count was too low. So it's back to Neulasta. They basically told us to go home and come back in a week without giving us anything or suggesting anything to get the white count up. I asked what if it doesn't go up by next week and they said they would give him a lighter dose of chemo then, and then a Neulasta injection... Seems odd to me. Needless to say we were very disappointed. Strangely enough Michael started feeling "bad" when we got home. Pains in the bones, maybe he suddenly started to make white blood cells? Fatigue and achy, I think a lot of it was worry and disappointment. We both haven't been sleeping well and it's been a little rough financially. We did get a $10,000. grant to pay for some co pays at the Oncologist's and fusion room.
I asked about the trial using white blood cells and HIV. They had heard of it and thought it had merit but suggested staying on course with the chemo drugs until we run out of options then start hitting the trails. At this point we agree. I am really looking forward to keeping track of this trail along with others so when we have to make a choice we will have the knowledge.
I hope everyone is having good results. Michael is seriously talking about getting back to work. Here's hoping.0 -
Low WBCSooze3821 said:This thread is getting incredibly long!
It's a good thing because people are posting but I wish we could archive some of the older posts.
Well, we were sent home yesterday because Michael's white cell blood count was too low. So it's back to Neulasta. They basically told us to go home and come back in a week without giving us anything or suggesting anything to get the white count up. I asked what if it doesn't go up by next week and they said they would give him a lighter dose of chemo then, and then a Neulasta injection... Seems odd to me. Needless to say we were very disappointed. Strangely enough Michael started feeling "bad" when we got home. Pains in the bones, maybe he suddenly started to make white blood cells? Fatigue and achy, I think a lot of it was worry and disappointment. We both haven't been sleeping well and it's been a little rough financially. We did get a $10,000. grant to pay for some co pays at the Oncologist's and fusion room.
I asked about the trial using white blood cells and HIV. They had heard of it and thought it had merit but suggested staying on course with the chemo drugs until we run out of options then start hitting the trails. At this point we agree. I am really looking forward to keeping track of this trail along with others so when we have to make a choice we will have the knowledge.
I hope everyone is having good results. Michael is seriously talking about getting back to work. Here's hoping.
This happened to Frank with the lsat session, his WBC went down to 1.4,but they did chemo anyway. Had the neulasta injection on the 4th day, and now is count is 30 thousand!!!!! I am presently sitting next to him, starting our 4th chemo session, day 1, the lonnnggggg day!!!
Keeping the faith for us,
Jo0 -
Low WBCSooze3821 said:This thread is getting incredibly long!
It's a good thing because people are posting but I wish we could archive some of the older posts.
Well, we were sent home yesterday because Michael's white cell blood count was too low. So it's back to Neulasta. They basically told us to go home and come back in a week without giving us anything or suggesting anything to get the white count up. I asked what if it doesn't go up by next week and they said they would give him a lighter dose of chemo then, and then a Neulasta injection... Seems odd to me. Needless to say we were very disappointed. Strangely enough Michael started feeling "bad" when we got home. Pains in the bones, maybe he suddenly started to make white blood cells? Fatigue and achy, I think a lot of it was worry and disappointment. We both haven't been sleeping well and it's been a little rough financially. We did get a $10,000. grant to pay for some co pays at the Oncologist's and fusion room.
I asked about the trial using white blood cells and HIV. They had heard of it and thought it had merit but suggested staying on course with the chemo drugs until we run out of options then start hitting the trails. At this point we agree. I am really looking forward to keeping track of this trail along with others so when we have to make a choice we will have the knowledge.
I hope everyone is having good results. Michael is seriously talking about getting back to work. Here's hoping.
This happened to Frank with the lsat session, his WBC went down to 1.4,but they did chemo anyway. Had the neulasta injection on the 4th day, and now is count is 30 thousand!!!!! I am presently sitting next to him, starting our 4th chemo session, day 1, the lonnnggggg day!!!
Keeping the faith for us,
Jo0 -
Never thought I would say it but wish I was therejoann p said:Low WBC
This happened to Frank with the lsat session, his WBC went down to 1.4,but they did chemo anyway. Had the neulasta injection on the 4th day, and now is count is 30 thousand!!!!! I am presently sitting next to him, starting our 4th chemo session, day 1, the lonnnggggg day!!!
Keeping the faith for us,
Jo
I mean in the chemo room, we want this over with! Michael's was down to 200. They said they would have still done it at 500 but now we have to wait...It has been running really high is why they took him off of Neulasta.
Good luck to you this week and I hope Frank bounces back quickly.0 -
What's New?Sooze3821 said:Never thought I would say it but wish I was there
I mean in the chemo room, we want this over with! Michael's was down to 200. They said they would have still done it at 500 but now we have to wait...It has been running really high is why they took him off of Neulasta.
Good luck to you this week and I hope Frank bounces back quickly.
Hey,
Is there any news of when they will re-start his chemo???? We are still watching the pulmonary embolus and monnitoring his PT/INR level's weekly. It was non-theraputic yesterday so they raised the Coumadin to 7mg daily. His white count was normal, 15.
Hope all is well!!!
In my prayers,
Jo0 -
No antibiotics!!!joann p said:What's New?
Hey,
Is there any news of when they will re-start his chemo???? We are still watching the pulmonary embolus and monnitoring his PT/INR level's weekly. It was non-theraputic yesterday so they raised the Coumadin to 7mg daily. His white count was normal, 15.
Hope all is well!!!
In my prayers,
Jo
Geez... after taking Michael off of Neulasta they put him on Levequin (spelling?) and that could have caused the drop in WBC. I'm a little miffed to say the least. It cost us a week!! They said they would "try again" next Monday. If his count isn't up then they will "cheat" and give him a lower dose of Cisplatin. Damn it! What if this causes the tumors to regroup? Not a happy camper!0 -
AntibioticsSooze3821 said:No antibiotics!!!
Geez... after taking Michael off of Neulasta they put him on Levequin (spelling?) and that could have caused the drop in WBC. I'm a little miffed to say the least. It cost us a week!! They said they would "try again" next Monday. If his count isn't up then they will "cheat" and give him a lower dose of Cisplatin. Damn it! What if this causes the tumors to regroup? Not a happy camper!
Frank is on antibiotics for a tooth infection that not only lowered his WBC, but is causing his PT/INR levels not to be theraputic, but the pro's of the anitbiotics veruse the con's, an infection is really a good thing at this point!!!!! Keepingn you in my prayers.... remember, good things come to those who wait!!!!!
Jo0 -
AntibioticsSooze3821 said:No antibiotics!!!
Geez... after taking Michael off of Neulasta they put him on Levequin (spelling?) and that could have caused the drop in WBC. I'm a little miffed to say the least. It cost us a week!! They said they would "try again" next Monday. If his count isn't up then they will "cheat" and give him a lower dose of Cisplatin. Damn it! What if this causes the tumors to regroup? Not a happy camper!
Frank is on antibiotics for a tooth infection that not only lowered his WBC, but is causing his PT/INR levels not to be theraputic, but the pro's of the anitbiotics veruse the con's, an infection is really a good thing at this point!!!!! Keepingn you in my prayers.... remember, good things come to those who wait!!!!!
Jo0 -
Waiting is what we will do.joann p said:Antibiotics
Frank is on antibiotics for a tooth infection that not only lowered his WBC, but is causing his PT/INR levels not to be theraputic, but the pro's of the anitbiotics veruse the con's, an infection is really a good thing at this point!!!!! Keepingn you in my prayers.... remember, good things come to those who wait!!!!!
Jo
Counting our blessings is something we have gotten used to. This is merely a bump in the road. We are reading and researching the cancer fighting diets like Dr.Li's cancer starving diet. http://www.ted.com/talks/william_li.html See what you think!0 -
CT scan result so farejoann p said:Good News Bad News
So today, Frank had a repeat CT scan and here are the results: after 3 rounds of chemo, he has responded well and the tumors have shrunk, the set back is that is had blood clots in both lungs and is presently in the hosptial,being placed on anti-coagulants... but that's ok, it's just 1 hicup in this roller coaster ride!!! Hosp all is well with you!!!
Jo
Hi, I been in a music festival and one week at a summerhouse before CT and next treatment. The system is a little bit different here than in the USA, and I am supposed to get one treatment in four weeks and in three days (a`24 houer), at the hospital. In addition I take an injection with Fragmin every day to avoid problems with blood clots (they teach me how to set the injection).
The CT scan was good news today and the size of the cancer tumours was reduced with app. little less than 50% ... It is good news and also the doctors was very happy today, but my tumours is really big so everything else would have been scary. I still dont have any feeling of sickness or any bieffects of the chemo, so hopefully also this time the chemo will be nice with me ( I am in the hospital again for the third of totally four chemo).
Good luck to both of you and be careful with the blood clots....!!!0 -
Hey ThereAnneLene said:CT scan result so fare
Hi, I been in a music festival and one week at a summerhouse before CT and next treatment. The system is a little bit different here than in the USA, and I am supposed to get one treatment in four weeks and in three days (a`24 houer), at the hospital. In addition I take an injection with Fragmin every day to avoid problems with blood clots (they teach me how to set the injection).
The CT scan was good news today and the size of the cancer tumours was reduced with app. little less than 50% ... It is good news and also the doctors was very happy today, but my tumours is really big so everything else would have been scary. I still dont have any feeling of sickness or any bieffects of the chemo, so hopefully also this time the chemo will be nice with me ( I am in the hospital again for the third of totally four chemo).
Good luck to both of you and be careful with the blood clots....!!!
Glad to hear that chemo isn't holding you down, it shouldn't. Frank and I went to a wedding this weekend, his first event since starting cheo and loosing his hair. He was very apprehensive about going, but 1 hour into it, he relaxed, and had a great time!!!! We are on our down weeks, chemo session 5 starts on Aug 8th. Still on Coumadin for the blood clots!!!!! Keeping our spirits up that the tumors continue to shrink!!!
Jo0 -
Good to see everyone so positive!joann p said:Hey There
Glad to hear that chemo isn't holding you down, it shouldn't. Frank and I went to a wedding this weekend, his first event since starting cheo and loosing his hair. He was very apprehensive about going, but 1 hour into it, he relaxed, and had a great time!!!! We are on our down weeks, chemo session 5 starts on Aug 8th. Still on Coumadin for the blood clots!!!!! Keeping our spirits up that the tumors continue to shrink!!!
Jo
Anne,that is excellent news and I'm glad to see everyone is continuing to get out and live life!
Michael was never a hat wearer but he is wearing hats now in response to the no hair issue. He has gotten several compliments on one of his hats that is quite sporty!
4th week of chemo drawing to a close. Tremendous improvement is how the chemo is effecting Michael. In the beginning, he would go to Chemo in sweat pants and a t-shirt, unable to be comfortable in everyday clothes. There were times he was so weak he couldn't walk. The dizziness was debilitating as well. He took pain and nausea pills like candy. He has progressed to the point where he takes an occasional pain pill, and that's more for the port site that's giving him trouble. He drives to and from Chemo even though I still go with him. He dresses everyday clothes and he is in good spirits.
We have an appointment with his boss tomorrow and will be discussing getting him back to work.
When we go in for an appointment at the cancer center we see the doctor's RN most of the time. We have only seen our "doctor" a hand full of times, is this typical of anyone else? The reason I even bring it up is because I am seeing a pattern of responses from the RN. She either is rather defeatist in her attitude or she really doesn't know. It's hard to get a straight answer, she offers no hope. We asked about when to get the port removed after the 6th treatment and she said she would wait for 3 months to make sure the cancer didn't come back, and then she added, "and it will come back it's just a matter of when." It wasn't necessary to remind us of that. When we ask her about news on the clinical trails we read about he kinda poo-poos them. The doctor at least admits he doesn't know. Being a rare type of cancer and the fact that new things are coming out all the time he won't hazard a guess.
Which brings me to my next point. This is another process worth looking into:
http://www.youtube.com/watch?v=1qG_ZWs04es 0 -
Not seeing the DocSooze3821 said:Good to see everyone so positive!
Anne,that is excellent news and I'm glad to see everyone is continuing to get out and live life!
Michael was never a hat wearer but he is wearing hats now in response to the no hair issue. He has gotten several compliments on one of his hats that is quite sporty!
4th week of chemo drawing to a close. Tremendous improvement is how the chemo is effecting Michael. In the beginning, he would go to Chemo in sweat pants and a t-shirt, unable to be comfortable in everyday clothes. There were times he was so weak he couldn't walk. The dizziness was debilitating as well. He took pain and nausea pills like candy. He has progressed to the point where he takes an occasional pain pill, and that's more for the port site that's giving him trouble. He drives to and from Chemo even though I still go with him. He dresses everyday clothes and he is in good spirits.
We have an appointment with his boss tomorrow and will be discussing getting him back to work.
When we go in for an appointment at the cancer center we see the doctor's RN most of the time. We have only seen our "doctor" a hand full of times, is this typical of anyone else? The reason I even bring it up is because I am seeing a pattern of responses from the RN. She either is rather defeatist in her attitude or she really doesn't know. It's hard to get a straight answer, she offers no hope. We asked about when to get the port removed after the 6th treatment and she said she would wait for 3 months to make sure the cancer didn't come back, and then she added, "and it will come back it's just a matter of when." It wasn't necessary to remind us of that. When we ask her about news on the clinical trails we read about he kinda poo-poos them. The doctor at least admits he doesn't know. Being a rare type of cancer and the fact that new things are coming out all the time he won't hazard a guess.
Which brings me to my next point. This is another process worth looking into:http://www.youtube.com/watch?v=1qG_ZWs04es
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.0 -
Trialsmr 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.
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.0
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