neuroendocrine small cell carcenoma
Comments
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I have so much to be Thankful for this Thanksgiving.joann p said: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
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.0 -
Hi, Sooze and JohannSooze3821 said:I have so much to be Thankful for this Thanksgiving.
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.
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...0 -
Rare cancer websiteSooze3821 said: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.
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 all0 -
SoozSooze3821 said:I have so much to be Thankful for this Thanksgiving.
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.
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!0 -
This is both to Anne and MarynbMarynb said:Sooz
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!
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.0 -
Hey!!!!Sooze3821 said:This is both to Anne and Marynb
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.
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,
Jo0 -
Hey!!!!Sooze3821 said:This is both to Anne and Marynb
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.
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,
Jo0 -
Hey!!!!Sooze3821 said:This is both to Anne and Marynb
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.
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,
Jo0 -
So good to have you guys here!joann p said:Hey!!!!
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
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'0 -
Third line of Treatments Since May of 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.0 -
SoozeSooze3821 said:Third line of Treatments Since May of 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.
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.0 -
Good to see you again Mary!
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.
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Pins and NeedlesSooze3821 said:Good to see you again Mary!
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.
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,
Jo
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I am sadjoann p said:Pins and Needles
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,
Jo
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...
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My life is turned upside downSooze3821 said:I am sad
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...
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
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Update from PET/CT scanSooze3821 said:I am sad
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...
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!
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neuroendocrine cancer of the pancreasCKaye said:small cell poorly diff neuroendocrine cancer of pancreas
My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.
His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.
Just trying to take one day at a time and be thankful for that day.Update: My sons residual tumors in liver and pancreas are still stable, about 17 months since last Chemo. Gained weight. Taking Creon for pancreatic deficiency (pancreatic enzymes).
My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.
His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.
Just trying to take one day at a time and be thankful for that day.
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neuroendocrine cancer
Hello. I just read ur post about ur rare cancer. My dad and uncle have the same cancer. How r doing?
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Lost the Battlejoann p said:My life is turned upside down
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
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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You are a brave womanjoann p said:Lost the Battle
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
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.
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