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neuroendocrine small cell carcenoma

AlisaD's picture
AlisaD
Posts: 2
Joined: Nov 2007

I am just looking for any survivors of this cancer out there or anyone else dealing with this cancer. Mine presented with a tumor on my cervix. We removed it along with a full hysterectomy and 50 lymph nodes, two of which had cancer. I am now undergoing 6 rounds of chemo (3 days on, 18 days off, 6 times) then I will do radiation. I am also following an organic, mostly raw foods diet along with supplements and herbs provided by an herbalist to help my body tolerate the chemo. I have a young son and am desperate to survive this. I know I am doing all I need to be doing. I am just looking for others out there dealing with this.

joann p
Posts: 50
Joined: Apr 2012

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's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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's picture
AnneLene
Posts: 27
Joined: Jun 2012

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
Posts: 50
Joined: Apr 2012

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's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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's picture
AnneLene
Posts: 27
Joined: Jun 2012

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

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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!

joann p
Posts: 50
Joined: Apr 2012

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

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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
Posts: 50
Joined: Apr 2012

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
Posts: 1134
Joined: Aug 2012

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.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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!

tpalmer64
Posts: 2
Joined: Mar 2013

I think we have similar cancers. I have read some of yout entries. I have done etoposide, carboplaten, whole brain radiation (with dexo) and not Topotecan. I am a 49 year old guy in pretty dood shape but I also had incredible nausea. They gave me two nausea meds until I asked for appetite medicine (because I was losing so much weight)and it has made a world of difference. The drug is Megase.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

About your appetite, on the days when you can't keep down anything else, you should try Boost or Carnation  Instant Breakfast.  My hubby would rather do that than take the medicine to increase appetite.  LOL  The steroids were giving him incredible hiccups so he tried not taking them and the nausea came on with a vengence!  The vomiting caused his pain level to rise because it increased the infammation where the liver tumors are.  Now he is sorry he didn't take the steroid.

 

This May it will be a year since he was diagnosed.  He is heavily fatigued from the meds, and the pain is controlled most of the time. He still enjoys life as much as possible.  Short walks, dinner out occasionally, a few days of work here and there.  We are staying positive, and cherish each day we are given, I won't waste it with worry!

Please feel to join our Face Book Page:  https://www.facebook.com/groups/461366300575473/

There is a lot of good information!

 

joann p
Posts: 50
Joined: Apr 2012

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
Posts: 50
Joined: Apr 2012

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

Marynb
Posts: 1134
Joined: Aug 2012

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's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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
Posts: 286
Joined: Sep 2009

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

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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
Posts: 50
Joined: Apr 2012

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 ass 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's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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
Posts: 50
Joined: Apr 2012

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's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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
Posts: 50
Joined: Apr 2012

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
Posts: 50
Joined: Apr 2012

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

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Anyone who has been following this knows that we have been going through this traumatic chapter of our life since May 2012. In the last seven months I have learned more than I ever thought I would need to know about Small Cell Cancer. It pays to be informed but be skeptical of all you read until you have done a lot of research. Keep reading and researching your particular cancer. Stay positive, it's hard but do it, you'll be glad you did. Exercise as much as possible, this includes walking. Change your diet, speak to your doctor and okay things with them to be sure, but all you really have to do is eat healthy, no more sugar!

My husband Michael is in the second round of drugs, having finished the first round, there was still a small amount left. He has three treatments left, then hopefully we can take a rest. When we no longer have to worry about the reaction with the drugs, we will bombard his body with immune boosting, and cancer fighting foods.

At this point in our journey Michael's hair is returning, he has returned to work part time. He still has some pain to work through in the liver area due to inflammation. His fatigue is a hurdle still. We are hoping when the drugs are out of his system his fatigue will be less. Our life is slowly returning to what it used to be. I'm not so afraid of what I don't know. We are told this monster will rear it's ugly head again, but not without a fight. We plan to enjoy and squeeze the heck out of every wonderful moment with each other we are given.

You are all in my prayers.

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

The new CT results this week was bad news and the tumors keep growing again. So it was decided that I will got 20 treatments with radiation before Christmas, so hopefully I get read of one of the tumors (the one how caused the Vena Cava Superiors syndrome). The first week in January I will got a new PET/CT scan and after that we will decide what to do.

This month I spend one week at the hospital in isolate, and after that I spent one week at home to recover. So I will have to recover my body with training… I actually got problems to walk caused of no muscle left in my body (caused of a combination of side effects from the chemo, high doses of cortisone and in addition long time spent in bed). When I got read of the Cisplatine&Etoposide it is may possible to start training again. The physiotherapist at the hospital will help me and I will be able to daily use the training center for cancer patients. So hopefully it will be skiing this winter also… I am an enthusiastic skiing person from before, so it is possible…

I had very strong emotional experience today when I meet a young lady 30 years old with cancer, and no hope. She breaks down in my knees and there and then she took my hearth. I have a daughter how is 27 years old and in one way I felt she could have been my daughter. If I in any way could have taken her pain away I would have done it there and then…

I always think I am to young for this, but everything is relative...

Marynb
Posts: 1134
Joined: Aug 2012

Hi Sooz,

I am glad that your husband is doing well. He is blessed to have you so devoted to helping him! This Thanksgiving I am so grateful to be here. I am sitll on the wait and see approach. I see the doctors again soon. I have been told that there is no chemo proven to be effective and that surgery is the only cure. May I ask what hospital your husband is beig treated at? I am in the process of trying to sort it all out. We have much to be thankful for this year. I am praying for all fighting this cancer!

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Anne I am sorry you don't have better news but I hope you keep your positive attitude. I believe this can be beat, or at least improved with positive thoughts. I know Michael felt much worse when he was on those drugs, now that he if off them his energy is returning. I want to see pictures of you on the ski slopes!! Please stay in touch.

Mary, I am in Texas and Michael is being treated at Texas Oncology. I feel these people have the best treatment option for us. So far, things have progressed well. I would STRONGLY suggest NOT taking the wait and see approach. I feel that the only reason Michael is here and doing well is because we acted quickly. Again, stay positive and do a lot of reading, don't believe everything you read but discuss it with your doctor. Not statistics or medicines but all the new information about immune building and natural cancer fighting foods.

I wish every one a wonderful December and my prayers are with you all.

joann p
Posts: 50
Joined: Apr 2012

Hey Guy's,
Sorry I haven't been on for awhile, I am going through tinhs with my son and his girlfriend, after being toeghter and my son supporting her through nursing school, she tell's him that she needs time to " find herself" and he has moved back home, so, as you can see, my plate is pretty full....
Anne, sorry to hear that the scan's weren't want you wanted, but PLEASE, fight for them to shrink!!!! We are all here rooting for you!!!!! GOOOOO ANNE!!!!
Sooze, Frank is having more side effects from this chemo than the first form, but he got to deer hunting, something he didn't think he would be doing this year!!!! I do have to tell you,preparing for the holidays a pretty emotional for me...I keep thinking about what if.. and I know I shouldn't...
I started to do per diem in the infusing center at our hospital and it actually makes me feel like I am helping people. I talk to them about my personal fight and they can relate to me, I am not just a nurse treating them, I am a caregiver going through this also, it makes them excited to talk to me, as I am with them!!!
Anyway, gotta run, Frank is having severe back pain and I need to medicate him!!!!
Hugs,love,prayers, and stength,
Jo

joann p
Posts: 50
Joined: Apr 2012

Hey Guy's,
Sorry I haven't been on for awhile, I am going through tinhs with my son and his girlfriend, after being toeghter and my son supporting her through nursing school, she tell's him that she needs time to " find herself" and he has moved back home, so, as you can see, my plate is pretty full....
Anne, sorry to hear that the scan's weren't want you wanted, but PLEASE, fight for them to shrink!!!! We are all here rooting for you!!!!! GOOOOO ANNE!!!!
Sooze, Frank is having more side effects from this chemo than the first form, but he got to deer hunting, something he didn't think he would be doing this year!!!! I do have to tell you,preparing for the holidays a pretty emotional for me...I keep thinking about what if.. and I know I shouldn't...
I started to do per diem in the infusing center at our hospital and it actually makes me feel like I am helping people. I talk to them about my personal fight and they can relate to me, I am not just a nurse treating them, I am a caregiver going through this also, it makes them excited to talk to me, as I am with them!!!
Anyway, gotta run, Frank is having severe back pain and I need to medicate him!!!!
Hugs,love,prayers, and stength,
Jo

joann p
Posts: 50
Joined: Apr 2012

Hey Guy's,
Sorry I haven't been on for awhile, I am going through tinhs with my son and his girlfriend, after being toeghter and my son supporting her through nursing school, she tell's him that she needs time to " find herself" and he has moved back home, so, as you can see, my plate is pretty full....
Anne, sorry to hear that the scan's weren't want you wanted, but PLEASE, fight for them to shrink!!!! We are all here rooting for you!!!!! GOOOOO ANNE!!!!
Sooze, Frank is having more side effects from this chemo than the first form, but he got to deer hunting, something he didn't think he would be doing this year!!!! I do have to tell you,preparing for the holidays a pretty emotional for me...I keep thinking about what if.. and I know I shouldn't...
I started to do per diem in the infusing center at our hospital and it actually makes me feel like I am helping people. I talk to them about my personal fight and they can relate to me, I am not just a nurse treating them, I am a caregiver going through this also, it makes them excited to talk to me, as I am with them!!!
Anyway, gotta run, Frank is having severe back pain and I need to medicate him!!!!
Hugs,love,prayers, and stength,
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

I feel like I have you as friends. Michael is having some issues with this medication as well. (Topotecan) His fatigue seems to be greater because we can't keep his anemia under control. He has had to have two transfusions, and is getting infusions of iron. Also it seems to pick things at random to attack first potassium, and now magnesium. We have two more treatments then I hope we get a good long rest from this. The only other thing is they gave him a patch to wear instead of taking pills for pain.

Last week Michael was in the hospital with kidney stones, and this week he had to have a brain MRI due to headaches. The MRI was clear, Thank God! He is seeing a urologist for an enlarged prostrate, this was a condition before the cancer diagnosis. In all the CTs up to now they have said it although large it was normal but the urologist wants to run another test. Better safe than sorry.

I know it seems it will never end, and there are moments of anxiety, that things will take a turn for the worse, but FIGHT IT! Being positive is a great help to you and everyone concerned. I am somewhat taken aback by some of the things we get in the mail. An otherwise good day can be over shadowed by an ad for "final planning". I ditch it as soon as possible so Michael isn't affected. But DO take time for yourself, have a cry if needed, pray..whatever will build you up to help you stay strong.

Love and prayers to everyone,
Sooze'

Sehmom
Posts: 4
Joined: Aug 2013

My mother has stage 4 neuroendocrine carcinoma. It is from an unknown primary but metastized in her liver. 8 rounds of chemo so far, after 4 rounds the tumor had decreased front 24 cm to 8cm.  We are waiting for the next pcars can but have been told not to NBC too hopeful kit will disappear.  Any info will help.

southerngal608
Posts: 1
Joined: Oct 2012

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's picture
Sooze3821
Posts: 51
Joined: Jun 2012

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.

djs123
Posts: 102
Joined: Jan 2012

Unfortunately, my husband too has this rare form of cancer in his lungs and bone. I was referred to a site (I think here somewhere) called inspire.com.
Recommend you explore it. Lots of good information.

Good luck to all

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Most of what Michael has been through is chronicled in this forum. After finishing 5/6 treatments with Topotecan on Friday, Michael was in the emergency room Saturday with severe pain and this morning we found out the cancer has out smarted the drug. They quickly switched him to Gemcitabine which he will get once a week for 3 weeks on 1 week off I think. We are still hopeful that this monster will be laid low and give us a break. I know we have acted quickly and done everything we should be doing. A miracle would be nice.

I will keep the rest of you in my prayers.

Marynb
Posts: 1134
Joined: Aug 2012

I haven't posted here in awhile, but I had neuroendocrine carcinoma. I am sorry that you and your husband are going through this at Christmas. I hope all goes well with the new treatments and that your husband is feeling well very soon and that you have a peaceful Christmas. You and your husband are in my prayers.

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Sooze3821
Posts: 51
Joined: Jun 2012

Last Monday Michael had his first new chemo in the hospital.  We go to the fusion room for the next five, every Monday.  He was only allowed to leave the hospital if his pain was under control.  He was wearing two Fentanyl pain patches (total of 50 mg) and taking two Nocor every 4 hours.  He is down to just the two payches at this time and an occasional dose of Ibprophen.  The pain is right at the edge of the ribs on the right side.  When he laughs or takes a deep breath, hiccups, etc. the pain soars up.  I am hoping the lessening of the pain means the tumor is quickly shrinking.

I know his WBC is low as he is very tired and looks a little pale.  To complicate that, he had a fever yesterday to they put him on antibiotics, which drops WBC.  *sigh*  This poor man has been through enough, someone please send us a break, I will pay the postage.

joann p
Posts: 50
Joined: Apr 2012

Hey You,

So Merry Christmas and Happy New Year's a few day's late!!!!! Well, I wish I knew what was goingon with Frank, but I don't, and, frankly, I am worried that his cancer might have spread!!!!! We finished chemo our 2nd form of chemo on Nov 30th and were supposed to have our repeat CT scan on Dec 27th that we canceled due to the snow and ice the night before, re -scheduled for Dec 31st. Frank then developed a toothache and some pain in his upper back. When he woke up on dec 30th, his entire left side of his face, were his toothache was, was swollen shut, forcing us to go to the dentist and again cancelling the CT scan. Yesterday he went to out orthopod due to the pain in his back. The md told us that it was inflammed, but I wonder, is it the cancer!!!! I feel as if I have falling aprat, it is only the 3rd day into the new year!!!!!! How is Michael????

                                                                                                       As alway's, hugs.love and prayers,

                                                                                                                               JoCry

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

When we went to the doctor for our 2 treatment of the new medicine they told us his WBC and platelets were too low.  They sent him home with me after getting magnesium and iron.  He is weak because of the low WBC, but they gave him pednizone (?) and it has given him some energy.  He is unable to lay down flat because of where the pain is, it makes it worse. He has been sleeping on the couch, proped up.  They have him on pain patches Fentanyl 50 and if he does anything, like walking very far he has to take a Norco as well. He hopes to go back to work on Tuesday, we'll see.

What makes me sad is when we see the RN, as opposed to the Onocolgist, she always reminds us that small cell is incurable.  Last time she said we might want to start thinking about Hospice.  I'm sorry but is she F'n NUTS!!  We intend to fight until there is nothing left!  I don't want to see her anymore, she has been a complete downer from the beginning.  Almost everytime we see her she makes some remark. 

We have ordered some Graviola and we will see if it has any effect.

 

Please keep us posted about Frank.  Don't worry until you have good reason.  I pray that his pain is not related to cancer.  I'm sorry to hear about his toothache, I had one like that several years ago, it was so bad my face sagged.

 

Love and prayers for us all, please stop this monster...

joann p
Posts: 50
Joined: Apr 2012

Well, we had our consult with repeat CT results and it is not good. All tumores in liver have grown, actually triple in size, same with the lymph nodes with a new nodule on the thyroid.. Nothng on spleen pancesas or lungs... I am devestated to say the least. and crying so hard I can't catch my breath!!!! The doctor hasn't given up, say's we have other options for more chemo, says that Frank is doing well enough to go thru more chemo!!! Oh My God, I am , for the first time since he was diagnoised with this, scared to death!!!!!Was this the last holiday's with my husband????

                                                                                                  Jo

joann p
Posts: 50
Joined: Apr 2012

It is with the deepest of regret's that I announce the passing of my husband, Frank Schumell, who lost his 11 month battle with Extrapulmonary Small Cell Poorly Differentiated Neuroendocrine Carconid. He went peacefully, at home with my children holding his hands, my cheek next to his, and his puppies by his side!!! He did not suffer, no pain at all!!! To all of you I say, FIGHT ON!!!!

                                                                                   God Bless,

                                                                                    Jo-Ann

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Sooze3821
Posts: 51
Joined: Jun 2012

We have become long distance friends in the battle to fight this monster.  Know that you have done EVERYTHING you could and you fought with all your heart.  This monster is heartless and cruel.  God Bless you Jo-Ann. Life goes on.

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

I am so sorry to hear that Frank lost the battle with this monster.  I have from the start of my diagnose with this cancer disease followed you and Soozes battles with and for your husbonds and I am so sorry for your lost. 

God Bless you and hugs, good wishes and warm toughts from Oslo.

 

Anne Lene

 

I will fight on and will try to come in here in this page app. once a mounth in the future (so you know I am alive or not).

Marynb
Posts: 1134
Joined: Aug 2012

Please accept my deepest sympathy. I just saw your post. You and your family are in my prayers. Your husband was so lucky to have a wife like you to fight with him. God Bless You, always.

Mary

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

Last time I had got some bad results from the CT and I was not in a good mood. The Dr. put me true X-ray in November/December as a try to get read of one tumor next to the hearth. So for the first time I got a PET/CT scan in January and since PET/CT is a much better instrument than only CT I thought I would see everything they havent seen before.... scary! The results was fantastic and the tumors are in the moment growing very slowly with very low activity ( Ki 67 was more than 70% orginally from the beginning) and the rest was with 0 activity (three tumors with very, very low activity, the rest is 0 activity - endosed?/closed the tumors for cancer activity). So tell that lovely RN next time that nothing is impossible/incurable.... even not small cells. I am not read of the cancer but atleast it give me a break...... It will be a new PET/CT in the beginning of March and I also know very well about the prognosis... , but you never know what tomorrow brings ;-)

 

Here is the photo from skiing in Oslo ( without co-ordination, balance, numbs under the feet and in addition rheumatism in my knees ( blood poisoning gave me that, but they think it will disappear ), but it was "VERY FUNNY!". I also got some toothache and problems with the eyes, but this thing is easy to fix (not funny, but anyhow curable).

 

' I was scared during last summer and thoughts like this is my last dance and this is my last that, was difficult. You cried in one moment and laught in the next. Life is here today and try to take it back! Love to both of you!

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

We discussed the situation with our Doctor and his nurse.  There will be no more talk of giving up!  Michael's problem with cancer is complicated with a destroyed disk in his back.  Strangly enough the pain patches and Norco has no effect on that pain.  The pain is severe and causes shortness of breath if he walks very far.  Fatigue is a whole other issue.  Some is caused by the pain, some is caused by the drugs.  He was recently put on Ritalin and no longer nods off during the day.  He has expresssed to me that he feels more like doing things.  I recently went back to work and my hours are horrible.  This causes problems because I am not available to Michael when he should be walking.  Excercise is crucial!  We are considering buying a treadmill so he can keep moving.

 

After being on Gemzar for 6 weeks, Michael had a CT on Tuesday.  They called today to tell us the tumors has shrunk by 50%!!!!  Don't forget, Michael is also taking Graviola.  We don't know if it was the Gemzar of the Graviola, or maybe a combination of the two, but we aren't changing anything for the time beng.  We are very happy with the results!!!   It has been 10 months since the diagnosis, and we are postive and hopeful.

 

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