neuroendocrine small cell carcenoma

Sooze3821

southerngal608 said:

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!

I am so glad to see you seeking information
There is so little available on the rare cancers. I have never heard of this, but I did see another entry in the list on this very cancer! (http://csn.cancer.org/node/198485)

This is a very active post and I'm not sure about the other one. The only advice I strongly recommend, is to NOT depend on the internet for answers. You have to be VERY choosy. Most of the information available is YEARS old. You have to be careful of the source as well. I do suggest staying informed as much as possible about your type of cancer as they are ALL different.

I wish you eery luck in the world, let us know how your mother's pet scan goes.

joann p

Sooze3821 said:

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!

New Drug
Sooze,
I belong to oncology stat that is a weekly oncology new's letter. On Sept 28th, I goty an article that the FDA just approved a new drug for colon cancer with met's. It's called Regorafenib. Frank started his new chemo onn 9/28/12, had his 2nd session yesterday and will go next Fri for 4 hours of hydration. His sessions aren schedule up until 11/16, then repeat CT scan. I finally had a patient who has a form of Neruoendocrine Cacner called Merkel Cell, and boy, it was nice to talk face to face to somebody who is going through the same thing, but you are my first line of comfort!!!
Think of You with prayers and hugs,
Jo

Marynb

Sooze3821 said:

Progress
Good to see people posting here. Hi Joann and AnneLene!
Anne it sounds like you are getting the same treatments. So far I haven't heard any negative results. This is awesome! We may have some really good news here!
Joann, Michael has gained weight as well. Michael no longer has to take Neulasta but he does have to be on antibiotics. The hydration has become an issue. AT LEAST 2 LITERS IN 24 HOURS!!! He's floating LOL. We were told after 6 treatments he would be in remission. For how long? No one knows.

So this other man who got the "reprieve" how many treatments did he go through? Good luck with the CT!!! Be sure and let us know!

Thanks for the support its very comforting to know we're not alone!

Neuroendocrine carcinoma
Hi Sooze,

I have been reading your posts. Good luck with the treatments. I was diagnosed with neuroendocrine carcinoma in march 2011. I was told that there is no known effective chemo for this type of cancer. I had surgery to remove tumor in the small intestine and some lymph nodes. The hospital is taking the wait and see approach to see if it spreads, but if it does the only treatment that is known to be effective is surgery. That is what I was told. I am wondering whether your husband is involved in a trial? Also, you mentioned getting assitance through a grant and SSI. I am a single mother and depleted my savings to pay for treatment copays, etc. I did not know I would qualify for SSI, so I continued to work throughtout this ordeal. I also had another cancer that I recived chemo and radiation for. Your husband is truly blessed to have someone helping him through this. How did you get a grant and what happened with SSI. I may finally ask for help.

I hope all is going well.

joann p

PatrickInNJ said:

Small Cell Neuroendocrine of the Pancreas
Hi, CKaye. My wife was diagnosed just a month ago with exactly the type of malignancy that your son has. Small cell neuroendocrine cancer ANYWHERE in the body is rare. For the pancreas, it's almost non-existent. I wanted to see how your son was doing.

My wife has had one round of chemo so far....etoposide/carboplatin....it has definitely helped her. I think, without chemo, she would have been gone a few weeks ago. She will be doing round 2 this week.

I know the future looks bleak, but I did manage to find some survivor stories online. I also think she will do well if we can get her own immunity functioning as strongly as possible, once the chemo is over. Nothing will stop a cancer faster than a person's own natural killer cells.

I wish everyone good luck and NEVER,NEVER,GIVE IN!!

Small Cell CA of Colon
Hi Patrick,
My name is Jo-Ann and my husband is presently batteling neuroendocrine cancer of the colon, small cell, poorly differentiated. I too also live in NJ. Where are you going for treatment??? It is truely a difficult thing to deal with, and I know you feel the future is bleak, I also, some day's feel like that, but don't give into it... FIGHT FIGHT FIGHT as we all are doing. If you need to chat, my e-mail is nrz83@aol.com.
It in with others,
Jo-Ann

joann p

PatrickInNJ said:

Small Cell Neuroendocrine of the Pancreas
Hi, CKaye. My wife was diagnosed just a month ago with exactly the type of malignancy that your son has. Small cell neuroendocrine cancer ANYWHERE in the body is rare. For the pancreas, it's almost non-existent. I wanted to see how your son was doing.

My wife has had one round of chemo so far....etoposide/carboplatin....it has definitely helped her. I think, without chemo, she would have been gone a few weeks ago. She will be doing round 2 this week.

I know the future looks bleak, but I did manage to find some survivor stories online. I also think she will do well if we can get her own immunity functioning as strongly as possible, once the chemo is over. Nothing will stop a cancer faster than a person's own natural killer cells.

I wish everyone good luck and NEVER,NEVER,GIVE IN!!

Small Cell CA of Colon
Hi Patrick,
My name is Jo-Ann and my husband is presently batteling neuroendocrine cancer of the colon, small cell, poorly differentiated. I too also live in NJ. Where are you going for treatment??? It is truely a difficult thing to deal with, and I know you feel the future is bleak, I also, some day's feel like that, but don't give into it... FIGHT FIGHT FIGHT as we all are doing. If you need to chat, my e-mail is nrz83@aol.com.
It in with others,
Jo-Ann

Sooze3821

Marynb said:

Neuroendocrine carcinoma
Hi Sooze,

I have been reading your posts. Good luck with the treatments. I was diagnosed with neuroendocrine carcinoma in march 2011. I was told that there is no known effective chemo for this type of cancer. I had surgery to remove tumor in the small intestine and some lymph nodes. The hospital is taking the wait and see approach to see if it spreads, but if it does the only treatment that is known to be effective is surgery. That is what I was told. I am wondering whether your husband is involved in a trial? Also, you mentioned getting assitance through a grant and SSI. I am a single mother and depleted my savings to pay for treatment copays, etc. I did not know I would qualify for SSI, so I continued to work throughtout this ordeal. I also had another cancer that I recived chemo and radiation for. Your husband is truly blessed to have someone helping him through this. How did you get a grant and what happened with SSI. I may finally ask for help.

I hope all is going well.

Hi Mary!
One thing I have learned is that there are almost no two cases alike. They can be similar. The differences in treatment amazes me. I find it hard to believe they are saying there is no chemo treatment for you. I would get a second opinion.

Michael was not involved in a trial, it was common treatment for his type of cancer. The grant was for a limited amount of services but everything helps. I don't have this information at my finger tips but I will look it up and get back to you. As for SSI, we were denied because I made $8.00 too much for the program. Can you believe it? Michael will start receiving SSA next month. This will help a lot. All you can do is apply and fill out the mounds of paper worth and hope for the best. It's been a few months since I did it, but I believe I started the process online. The nice part is Michael is allowed to work at the same time. (As long as he feels like it)

Insurance is the biggest issue. I am unemployed at the moment, so I don't have insurance. Michael is continuing to work as much as he can to save his insurance until we figure something else out. Even if you are on SSA, you are not eligible for Medicaid for two years. What they expect you to do for two years , I have no idea...

I hope this information helps. I have started a FaceBook page

https://www.facebook.com/groups/461366300575473/

I started it for us to save information on but I think we could all benefit if we added information we found. You are welcome to join.

I have you all in my prayers!

Sooze3821

joann p said:

New Drug
Sooze,
I belong to oncology stat that is a weekly oncology new's letter. On Sept 28th, I goty an article that the FDA just approved a new drug for colon cancer with met's. It's called Regorafenib. Frank started his new chemo onn 9/28/12, had his 2nd session yesterday and will go next Fri for 4 hours of hydration. His sessions aren schedule up until 11/16, then repeat CT scan. I finally had a patient who has a form of Neruoendocrine Cacner called Merkel Cell, and boy, it was nice to talk face to face to somebody who is going through the same thing, but you are my first line of comfort!!!
Think of You with prayers and hugs,
Jo

Hi Joann
I sent you an email with some information about a FaceBook page I started. see what you think.

I would like to subscribe to that newsletter as well, can you tell me how? I am constantly looking for new information.

Michael is going for his second round of the new chemo on Monday. It's much easier on him. Fatigue is still the biggest issue at this point. It's obvious to everyone he is doing better. His CT scan is scheduled for the end of the month. I expect it to be good news.

It's great to talk face to face with others in the same boat. I don't have that luxury often. I really depend on the success stories here to get me through the rough spots. I find that the more informed I am, the less scared I am. My goal is to seek out new alternatives that have worked for people. I think the meds our husbands are taking are necessary but I think what they eat may help. Look up some news on a food item called Sour Sop. I am doing research on it now.

Hugz and prayers to everyone.
Sooze

joann p

Marynb said:

Neuroendocrine carcinoma
Hi Sooze,

I have been reading your posts. Good luck with the treatments. I was diagnosed with neuroendocrine carcinoma in march 2011. I was told that there is no known effective chemo for this type of cancer. I had surgery to remove tumor in the small intestine and some lymph nodes. The hospital is taking the wait and see approach to see if it spreads, but if it does the only treatment that is known to be effective is surgery. That is what I was told. I am wondering whether your husband is involved in a trial? Also, you mentioned getting assitance through a grant and SSI. I am a single mother and depleted my savings to pay for treatment copays, etc. I did not know I would qualify for SSI, so I continued to work throughtout this ordeal. I also had another cancer that I recived chemo and radiation for. Your husband is truly blessed to have someone helping him through this. How did you get a grant and what happened with SSI. I may finally ask for help.

I hope all is going well.

Hi Mary
Hi,
My is Jo-Ann and my husband is presently batteling woth this ame ugly monster. Sooze and I have been communicating for several month's, comparing notes, I too can't believe that your doc's are taking a "wait and see" approach to this cancer. I would seek a 2nd opinion... As fot SAA, talk to your doc and find out, when and if you need chemo, what pharmacutical company makes the drug, go to their website and see if they have an assitance program, most of them do....Sooze had been my constant rock since almost the beginning of our journey, so, if at anytime you need to chat, just either do it here, or e-mail me at nrz83@aol.com, or find me on facebook....
Hugs, prayers, and encouragement
Jo-Ann

joann p

Marynb said:

Neuroendocrine carcinoma
Hi Sooze,

I have been reading your posts. Good luck with the treatments. I was diagnosed with neuroendocrine carcinoma in march 2011. I was told that there is no known effective chemo for this type of cancer. I had surgery to remove tumor in the small intestine and some lymph nodes. The hospital is taking the wait and see approach to see if it spreads, but if it does the only treatment that is known to be effective is surgery. That is what I was told. I am wondering whether your husband is involved in a trial? Also, you mentioned getting assitance through a grant and SSI. I am a single mother and depleted my savings to pay for treatment copays, etc. I did not know I would qualify for SSI, so I continued to work throughtout this ordeal. I also had another cancer that I recived chemo and radiation for. Your husband is truly blessed to have someone helping him through this. How did you get a grant and what happened with SSI. I may finally ask for help.

I hope all is going well.

Hi Mary
Hi,
My is Jo-Ann and my husband is presently batteling woth this ame ugly monster. Sooze and I have been communicating for several month's, comparing notes, I too can't believe that your doc's are taking a "wait and see" approach to this cancer. I would seek a 2nd opinion... As fot SAA, talk to your doc and find out, when and if you need chemo, what pharmacutical company makes the drug, go to their website and see if they have an assitance program, most of them do....Sooze had been my constant rock since almost the beginning of our journey, so, if at anytime you need to chat, just either do it here, or e-mail me at nrz83@aol.com, or find me on facebook....
Hugs, prayers, and encouragement
Jo-Ann

joann p

Sooze3821 said:

Hi Joann
I sent you an email with some information about a FaceBook page I started. see what you think.

I would like to subscribe to that newsletter as well, can you tell me how? I am constantly looking for new information.

Michael is going for his second round of the new chemo on Monday. It's much easier on him. Fatigue is still the biggest issue at this point. It's obvious to everyone he is doing better. His CT scan is scheduled for the end of the month. I expect it to be good news.

It's great to talk face to face with others in the same boat. I don't have that luxury often. I really depend on the success stories here to get me through the rough spots. I find that the more informed I am, the less scared I am. My goal is to seek out new alternatives that have worked for people. I think the meds our husbands are taking are necessary but I think what they eat may help. Look up some news on a food item called Sour Sop. I am doing research on it now.

Hugz and prayers to everyone.
Sooze

Hey!!
Well, Frank had to have 5 hours of hydration today due to his BUN/Creat level being slightly elevated...Listen, I don't know if you want to do this, but I think Michael should get a flu and pneumonia vaccination due to his immuno-compromised system right now. I spoke to my oncologist who highly reccomended it, so please talk to yours. As for the oncology site, I went on-line and created an account, they send you up to date info for all types of cancer. I belomg to NET'S, CSN and so many other sites.
I must say Sooze, youb just don;t know how much you bhelp me these past few months. I feel like I am on an f&^king roller coster ride, or a Bipolar nut. This week was bad, I cried more than I laughed and I don't know why!!! Is it the uncertanty of this illess, am I scared??? I just can't pinpoint it.. is it becausen my birthday is so and Im thinking it might be my last with him, the holiday's, I don;t know!!!! Do youb feel this at all, am I normal??? UGHHHHHHHH!!!!!! I hate this!!!!
Hugs, prayers, love and strength your way,
Jo

Marynb

joann p said:

Hi Mary
Hi,
My is Jo-Ann and my husband is presently batteling woth this ame ugly monster. Sooze and I have been communicating for several month's, comparing notes, I too can't believe that your doc's are taking a "wait and see" approach to this cancer. I would seek a 2nd opinion... As fot SAA, talk to your doc and find out, when and if you need chemo, what pharmacutical company makes the drug, go to their website and see if they have an assitance program, most of them do....Sooze had been my constant rock since almost the beginning of our journey, so, if at anytime you need to chat, just either do it here, or e-mail me at nrz83@aol.com, or find me on facebook....
Hugs, prayers, and encouragement
Jo-Ann

Thank you
Hi joann and sooz. Thank you for responding. Yes, I did get 2 opinions and that is the approach they took. I will see the docs again in a couple of weeks. I have a lot of questions to ask. It's funny, but trying to catch up and manage the rest of my life, which was put on hold for a year, takes up most of my time and energy. It's almost like I don't have time for cancer. I need to do more research, for sure. I got no economic help at all and have nearly wiped out my retirement savings and have lost my job. I am hoping to get back to work asap.

I noted that you are researching diet, etc. I just read the book, " Super Immunity", by Dr. Fuhrman. It makes sense. I will not take any supplements, as their safety is not proven before they are put on the market. I think a plant based diet makes good sense, so I am trying.

You are in my prayers and I will continue to follow your posts for information. I will keep you posted after I see the docs.

Mary

Sooze3821

Marynb said:

Thank you
Hi joann and sooz. Thank you for responding. Yes, I did get 2 opinions and that is the approach they took. I will see the docs again in a couple of weeks. I have a lot of questions to ask. It's funny, but trying to catch up and manage the rest of my life, which was put on hold for a year, takes up most of my time and energy. It's almost like I don't have time for cancer. I need to do more research, for sure. I got no economic help at all and have nearly wiped out my retirement savings and have lost my job. I am hoping to get back to work asap.

I noted that you are researching diet, etc. I just read the book, " Super Immunity", by Dr. Fuhrman. It makes sense. I will not take any supplements, as their safety is not proven before they are put on the market. I think a plant based diet makes good sense, so I am trying.

You are in my prayers and I will continue to follow your posts for information. I will keep you posted after I see the docs.

Mary

I wish I knew how to start a new page for this discussion
So many of the posts are old and although they are still useful, the newest ones have better information. Also it takes forever for my browser to get into here.

Anyway. Complications. Michael was doing incredibly well on the new treatments of topotecan. We saw our primary physician on the 15th and she was very happy and said Michael was way above average in response. We were all laughing and feeling like the future was looking so bright.

By that Tues evening, life bite us square in the behind. Michael started throwing up and Weds. Thurs. there was nothing but diarrhea and pain. They finally took a sample and found he had contracted c-diff, a VERY serious bacterial infection. Known to attack someone who has been on antibiotics for awhile. That didn't fit, so we had no idea. They gave him meds and over the weekend it got so much worse. By the time we got in on Monday he was severely dehydrated, in severe pain, and VERY woozy. They started him on fluids and gave him some morphine then sent us home. The difference was like night and day as far as pain and woozyness. The diarrhea still remains and it may take awhile before it's any better.

He was able to get the flu shot on Monday before this all hit and we thought at first it might even be a reaction. He was in yesterday for hydration, and was back today and again tomorrow. He is resting comfortably but is very weak as he can't keep food for long. We are following the bratt diet, but the diarrhea is still very watery. It's not over but there is improvement so I have to hold on to that.

I knew this wouldn't be easy but I had hopes we were over the rough part for awhile.
Some days it's very hard to be the strong one, yet somehow I do it.

mr steve

Sooze3821 said:

I wish I knew how to start a new page for this discussion
So many of the posts are old and although they are still useful, the newest ones have better information. Also it takes forever for my browser to get into here.

Anyway. Complications. Michael was doing incredibly well on the new treatments of topotecan. We saw our primary physician on the 15th and she was very happy and said Michael was way above average in response. We were all laughing and feeling like the future was looking so bright.

By that Tues evening, life bite us square in the behind. Michael started throwing up and Weds. Thurs. there was nothing but diarrhea and pain. They finally took a sample and found he had contracted c-diff, a VERY serious bacterial infection. Known to attack someone who has been on antibiotics for awhile. That didn't fit, so we had no idea. They gave him meds and over the weekend it got so much worse. By the time we got in on Monday he was severely dehydrated, in severe pain, and VERY woozy. They started him on fluids and gave him some morphine then sent us home. The difference was like night and day as far as pain and woozyness. The diarrhea still remains and it may take awhile before it's any better.

He was able to get the flu shot on Monday before this all hit and we thought at first it might even be a reaction. He was in yesterday for hydration, and was back today and again tomorrow. He is resting comfortably but is very weak as he can't keep food for long. We are following the bratt diet, but the diarrhea is still very watery. It's not over but there is improvement so I have to hold on to that.

I knew this wouldn't be easy but I had hopes we were over the rough part for awhile.
Some days it's very hard to be the strong one, yet somehow I do it.

Fiber
give fiber a try. My wife used the big chewable one"s they helped some...

Sooze3821

mr steve said:

Fiber
give fiber a try. My wife used the big chewable one"s they helped some...

Update:
Today they did the CT Scan early not only for the original reasons of checking progress but to see if there is abnormal bleeding in the bowels. And, he had to have his blood typed & crossed because tomorrow he will be getting a transfusion. We really need this to be over so we can have our life back.

They said fiber could aggravate the bleeding so even toast is out. He has been tolerating, bananas, & crackers, sometimes eggs.

joann p

Sooze3821 said:

I wish I knew how to start a new page for this discussion
So many of the posts are old and although they are still useful, the newest ones have better information. Also it takes forever for my browser to get into here.

Anyway. Complications. Michael was doing incredibly well on the new treatments of topotecan. We saw our primary physician on the 15th and she was very happy and said Michael was way above average in response. We were all laughing and feeling like the future was looking so bright.

By that Tues evening, life bite us square in the behind. Michael started throwing up and Weds. Thurs. there was nothing but diarrhea and pain. They finally took a sample and found he had contracted c-diff, a VERY serious bacterial infection. Known to attack someone who has been on antibiotics for awhile. That didn't fit, so we had no idea. They gave him meds and over the weekend it got so much worse. By the time we got in on Monday he was severely dehydrated, in severe pain, and VERY woozy. They started him on fluids and gave him some morphine then sent us home. The difference was like night and day as far as pain and woozyness. The diarrhea still remains and it may take awhile before it's any better.

He was able to get the flu shot on Monday before this all hit and we thought at first it might even be a reaction. He was in yesterday for hydration, and was back today and again tomorrow. He is resting comfortably but is very weak as he can't keep food for long. We are following the bratt diet, but the diarrhea is still very watery. It's not over but there is improvement so I have to hold on to that.

I knew this wouldn't be easy but I had hopes we were over the rough part for awhile.
Some days it's very hard to be the strong one, yet somehow I do it.

C-Dif
Sooze,
So sorry to hear about your set back. What are they contributing the C-Dif from??? This is a highly contagious cond, so even if you sat on a toilet seat used by someone with this, it can be spread to other's, that's why cleaning is so important!!!!!

Also, I can understand all that you are feeling. Yesterday, I had such a bad day that I thought I was going to have to be evaluated for a nervous breakdown. My boss has been riding my **** lately, this has been affecting my job and they, even though they are nurses, haven't offered me any type of couseling at all.Plus, I am dealing with my mom possilbly going into renal failure and my children going through some hard times, so I get it that this is getting to you. I am here for you to vent, it makes me forget what I am going through!!!! My cell is 973-698-8136, a NJ number

Is Michael on meds such as Flagyl and Cipro?? These 2 meds are used freguently for C-Dif. You really don't want to keep the diarrhea in too much cause the C-Dif will just sit there in his bowels. Fiber can also form the stool, I went through this with my mom, it's a long slow process.
Hugs, prayers, and formed stools to you,
Love,
Jo

Sooze3821

joann p said:

C-Dif
Sooze,
So sorry to hear about your set back. What are they contributing the C-Dif from??? This is a highly contagious cond, so even if you sat on a toilet seat used by someone with this, it can be spread to other's, that's why cleaning is so important!!!!!

Also, I can understand all that you are feeling. Yesterday, I had such a bad day that I thought I was going to have to be evaluated for a nervous breakdown. My boss has been riding my **** lately, this has been affecting my job and they, even though they are nurses, haven't offered me any type of couseling at all.Plus, I am dealing with my mom possilbly going into renal failure and my children going through some hard times, so I get it that this is getting to you. I am here for you to vent, it makes me forget what I am going through!!!! My cell is 973-698-8136, a NJ number

Is Michael on meds such as Flagyl and Cipro?? These 2 meds are used freguently for C-Dif. You really don't want to keep the diarrhea in too much cause the C-Dif will just sit there in his bowels. Fiber can also form the stool, I went through this with my mom, it's a long slow process.
Hugs, prayers, and formed stools to you,
Love,
Jo

C-diff
Unfortunately we are pretty sure Michael contracted c-diff from the infusion room. I immediately removed our sheets from the bed and disinfected our bathrooms at home. In Austin, everywhere you go there are stations with soap-less disinfectant, and I have it all over the house.

Yes, I understand. Dealing with the cancer is more than enough but when you have other life issues, it's quite overwhelming sometimes. I am terrible about talking on the phone, I think I'd rather cut my arm off first, lol, but I appreciate the offer.

He is on something called metronidazole. There has been MUCH improvement over the last 48 hours.

Also the CT scan they took was very encouraging. The tumor that was left has disappeared and the nodes they still show unchanged could be just scar tissues. There was no abnormal bleeding and it was most likely the blood came from more of an abrasion rather that a cut/split. And lastly nothing has grown or spread.

It is increasingly harder for me to get into this forum and I have started a FaceBook page https://www.facebook.com/groups/461366300575473/ JoAnn has joined and another supportive friend of mine, Paula. Please feel free to join us.

I hope no one else gets this terrible terrifying infection. How is Frank faring?

joann p

Sooze3821 said:

C-diff
Unfortunately we are pretty sure Michael contracted c-diff from the infusion room. I immediately removed our sheets from the bed and disinfected our bathrooms at home. In Austin, everywhere you go there are stations with soap-less disinfectant, and I have it all over the house.

Yes, I understand. Dealing with the cancer is more than enough but when you have other life issues, it's quite overwhelming sometimes. I am terrible about talking on the phone, I think I'd rather cut my arm off first, lol, but I appreciate the offer.

He is on something called metronidazole. There has been MUCH improvement over the last 48 hours.

Also the CT scan they took was very encouraging. The tumor that was left has disappeared and the nodes they still show unchanged could be just scar tissues. There was no abnormal bleeding and it was most likely the blood came from more of an abrasion rather that a cut/split. And lastly nothing has grown or spread.

It is increasingly harder for me to get into this forum and I have started a FaceBook page https://www.facebook.com/groups/461366300575473/ JoAnn has joined and another supportive friend of mine, Paula. Please feel free to join us.

I hope no one else gets this terrible terrifying infection. How is Frank faring?

Good News
Well Sooze, your husband is on the right meds, Flagyl is metronidazole, the main med to treat C-Dif.Right now,and I am so glad he is doing better as far as both the diarrhea. It's great to hear that the cancer is in check, how many treatments has he had with the new meds??? Franks has had 4 thus far, will finish on Nov 16th with scan soon after that. .Frank had another treatment yesterday. This time he is having some mild side effects, eg: hot flashes, diarrhea and alot of gas, but I'll take all this if it works....Right now we are getting ready for Hurricane Sandy, you know, milk, eggs, bread, and so forth.
Hugs,prayers and kisses,
Jo

Sooze3821

joann p said:

Good News
Well Sooze, your husband is on the right meds, Flagyl is metronidazole, the main med to treat C-Dif.Right now,and I am so glad he is doing better as far as both the diarrhea. It's great to hear that the cancer is in check, how many treatments has he had with the new meds??? Franks has had 4 thus far, will finish on Nov 16th with scan soon after that. .Frank had another treatment yesterday. This time he is having some mild side effects, eg: hot flashes, diarrhea and alot of gas, but I'll take all this if it works....Right now we are getting ready for Hurricane Sandy, you know, milk, eggs, bread, and so forth.
Hugs,prayers and kisses,
Jo

Much Improvement
Almost back to normal. Next week is the third treatment with the new stuff, how did you get so far ahead of us, LOL. Glad to hear things are going well. I hope for both of us that this will give us some time to get our lives back and enjoy life. I strongly suggest starting an immunity boosting diet, as well as an anti inflammatory diet as soon after treatment as possible.

I have friends in South Hampton, NY that are scared to death of this storm. I pray you are okay in that respect as well.

Silly question, is Frank's hair coming back? Michael's returned first as a little peach fuzz and is now getting darker and thicker. Still very short. LOL, it makes his head look dirty but I can't bear to remove it.

joann p

Sooze3821 said:

Much Improvement
Almost back to normal. Next week is the third treatment with the new stuff, how did you get so far ahead of us, LOL. Glad to hear things are going well. I hope for both of us that this will give us some time to get our lives back and enjoy life. I strongly suggest starting an immunity boosting diet, as well as an anti inflammatory diet as soon after treatment as possible.

I have friends in South Hampton, NY that are scared to death of this storm. I pray you are okay in that respect as well.

Silly question, is Frank's hair coming back? Michael's returned first as a little peach fuzz and is now getting darker and thicker. Still very short. LOL, it makes his head look dirty but I can't bear to remove it.

Peach Fuzz
Hey Snooze, yes Frank's hair is growing back the same way as Michael's. At first, it was light on the top back and sides, but now, the top is getting a little darker, almost looks like he has a mohawk!!! I think we are alittle ahead of you because of the week off that Michael had due to low WBC's. Anyway, I just wanted to say hi, now I have to go back to Sandy!!!
Be Safe,
J

joann p

Sooze3821 said:

Much Improvement
Almost back to normal. Next week is the third treatment with the new stuff, how did you get so far ahead of us, LOL. Glad to hear things are going well. I hope for both of us that this will give us some time to get our lives back and enjoy life. I strongly suggest starting an immunity boosting diet, as well as an anti inflammatory diet as soon after treatment as possible.

I have friends in South Hampton, NY that are scared to death of this storm. I pray you are okay in that respect as well.

Silly question, is Frank's hair coming back? Michael's returned first as a little peach fuzz and is now getting darker and thicker. Still very short. LOL, it makes his head look dirty but I can't bear to remove it.

Neuroendocrine Canccer Awareness Day
Hey to you and Michael!!!
Today is neuroendocrtine Cancer awareness day, out symbol is a Zebra!!!! I am thinking of not only Michael and yourself, but for everyone on this website!!! I hope all is fine with both your battle with cancer and hurricane Sandy!!!!! Let's go on kicking cancer's ugly butt!!!!
As always, love,hugs, strenght and prayers,
Jo-Ann and Frank