CancerCompass message board discussion started by Oranjestad on 8/21/2005 http://www.cancercompass.com/message-board/message/all,2787,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm looking for long term survivors. My daughter, age 26, has been staged 3B small call cervical cancer. Oranjestad Sun, 21 Aug 2005 00:00:00 GMT Hi there, I'm 33 years old and also have been diagnosed with small cell of the cervix on the 9th of July,2005.Ever since that time i have been searching for someone with the same or like you a long term survivor to no avail until i came across your message.I live in Australia and my chemo doctor is the only one who has given us any hope.He told me he'd give me 2 years and he'll cure me & never see me again.All we have is hope. Bloss Tue, 04 Oct 2005 00:00:00 GMT Hi, I'm 43 years old and was diagnosed with small cell cervical cancer as well as adeno carcinoma of cervix and renal cell carcinoma of the kidney in may of 2003. I have since undergone major surgery...radical hysterectomy and node ectomy and also a right kidney removal. Following surgery I underwent 6 rounds of cisplatin and Itoposide chemotherapy followed by 6 weeks of daily radiation (1 day a week internal the other 4 days external). Though my body is suffering from the side effects and lasting effects of the treatments...I received good news last week. I just had my follow up PET scan (10 mos. post treatment) and it came back with no cancer seen.... Never give up hope.... I haven't heard from any long term survivors either...but we are hear today and will live every day to it's fullest now...never wasting another minute of time with our loved ones. Stay in touch. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- I was stage IB2 Scoterri Sun, 23 Oct 2005 00:00:00 GMT Hi, I'm 30 years old and was diagnosed with small cell cervical cancer stage 2b in Sept of 2004. I had a radical modify hysterectomy and node ectomy . Following surgery I underwent 3 rounds of cisplatin and Etoposide chemotherapy followed by 9 weeks of daily radiation (6 wks were external and the other 3 internal). Then I had 3 more rounds of chemo with the same drugs....I haven't heard from any long term survivors either...actually this is the first time that I came across with someone dealing with this rare type of cancer, I never give up HOPE and I always try to be positive about it.....God Bless You!!!!! Tb210675 Tue, 03 Jan 2006 00:00:00 GMT Hi, I hope you are doing well. Can you please tell me what chemo drugs the doc gave you? I was diagnosed in May and my follow up in December showed a recurrence. I am looking for information on how to retreat this. Thanks! Take care. Grover Mon, 09 Jan 2006 00:00:00 GMT Hi, I hope you are doing well. Can you please tell me what chemo drugs the doc gave you? I was diagnosed in May and my follow up in December showed a recurrence. I am looking for information on how to retreat this. Thanks! Take care. Grover Mon, 09 Jan 2006 00:00:00 GMT We were told my 27 (at the time 26) year old sister has small cell carcinoma, stage IIIb. This was March 2005. She has been thru 18 weeks of cisplatin and etopside (not sure about the spelling), when that was over she went in to have surgery in Aug 2005. They found it on the lining of her small intestines. The doctor just closed her back up. I had lost all hope. My entire family was crushed, because for months the chemo was working the 9cm tumor was shrinking. Then we were hit, I should say she was hit with that news. They started a new chemo treatment with external radiation this round. It was cisplatin and another type a new one. But she only had 3 treatments, She started to have nerve damage from all of the cisplatin. So they stopped the chemo, and she went for 4 weeks of internal radition. The doctors only gave her two, because they said the tumor was gone. She goes in for her PET scan on January 16. I pray that the small amount of chemo she received the last time got the cells on her intestines. We know the tumor is gone. She is in the Bahamas right now with our family. She wakes with this cancer everyday, I hope she is able to let go while she is there. I know she is worried about this test. We all are. My family and myself have spent countless hours reading and learning about this cancer and the new treatments out there for it. My mother was the one that found the new chemo they gave her this last treatment. Please if any comes across someone that has survived this cancer long term, please let me know. I will do the same. Please keep my sister in your prayers. Thank you. Caseyk Mon, 09 Jan 2006 00:00:00 GMT I posted the history on my sister who has small cell cervical cancer. I really would like to know about your treatment in detail. Thank you Caseyk Mon, 09 Jan 2006 00:00:00 GMT Kerri, I am lifting your sister up in prayer. This is a dreadful disease and it is very scarey. Attitude is everything. I began my treatments wtih radical hysterectomy and lymph node removal. ( I also had my kidney out at that time because I also had renal cell carcinoma) 4 weeks after surgery I started on Chemotherapy. I had 6 rounds of aggressive cisplatin and etoposide. Every third week I went in for 3 days in a row and received 5 hours worth of infusion. (that was one round). Upon completion of all 5 rounds I started daily radiation to the pelvic and abdominal area. One day a week I received internal radiation to the vaginal canal and base of the pelvis. I also have suffered from significant nerve damage but I can tell you that I am cancer free today and it has been one year and one month since I completed treatments. I say "Plan for the worst but believe for the best". Enjoy every minute that you can with your sister and plan for her not being with you. Then put that on one side of your brain and on the other side pray for the Miricle that God is so capable of giving and believe for it. I live each day to it's fullest now. I feel like I have been given a chance to make sure that each day and every moment counts. That is more than most people get in their lives. I have time to plan and to make sure the people around me know how much I treasure them. It is scarey to think that I may not be here in 5 years but I still believe for the miracle of healing. There are not many long term survivors of this disease but you are right to keep researching as there are new things coming about every day. You guys are in my prayers. Terri Scoterri Tue, 10 Jan 2006 00:00:00 GMT I am doing fine, it was very hard for me decide to remove my uterus and everything but my Doctor told me to left my ovaries so that what I did, he remove my uterus, fallopian tubes, cervix, part of my vagina and 16 lymph nodes. When I said rounds I meant three days in a row every three weeks, the first day was cisplatin followed by etoposide the next day then cisplatin again the third day so those were my first 3 chemo rounds. The external radiation was 6 weeks (5 Days) for 10 minutes and the internal was once a week for 10 minutes too and it last 3 weeks. Then I did three more rounds of chemo with the same drugs as I mention above. Before I did radiation, I had my first PET and it came back normal because they wanted to be sure that I did not have any recurrence in another place of my body, so far I have no recurrence and still hoping for the best! Remember God loves you. Tania Tb210675 Tue, 10 Jan 2006 00:00:00 GMT My sister had 18 weeks of chemo, the first round. She had 5 days of both chemos it took about 6 hours to give it to her, then off for 21. This went on for 18 weeks. I read about some of the other treatments people were givin and it sounds like my sister has had a huge dose of chemo the first round then the second. I really hope it worked. We will know after the 16. I will let everyone know how the test comes out. Thank you. Caseyk Tue, 10 Jan 2006 00:00:00 GMT Wonderful news everyone. My sister just got the results of her PET scan....CANCER FREE!!!!!! We are so happy for her. This has been a long struggle for her. I will remain hopeful this horriable cancer will never ever come back. Caseyk Tue, 17 Jan 2006 00:00:00 GMT I really wish the best for your sister and your family! You mentioned that your mother was the one that found the new chemo for the latest treatment. Do you know what the name of the drug was? I am about to go through round 2 of this, because I have had a recurrence. I am always looking for information from others. Thanks! Grover Tue, 17 Jan 2006 00:00:00 GMT Thanks for the information. It seems that everyone who has this has had similar treatments. After going through so much hell, it is really hard to comprehend how any cancer could have lived! Meanwhile I feel fine and continue to figure skate (i am a skater)! I have changed doctors and hospitals because I never felt comfortable with mine to begin with. I always got the sense of doom and gloom from them and felt like I was nothing but a new chart to review. I am hoping for a fresh start! Grover Tue, 17 Jan 2006 00:00:00 GMT The drugs used for me during chemotherapy were Cisplatin and Etoposide.This was a 3 day treatment every 3 weeks.I had 4 cycles of it. I had the all clear but now,2 months on and the cancer has gone to my bones. Bloss Sat, 21 Jan 2006 00:00:00 GMT Pam, I spoke with my mother about the new chemo they gave my sister. When they found that the small cell had spread to her intestine, they started her on cisplatin again with the chemo my mother found. This new one is called CPT-11 (Irinotecan), they have had some good response with it. My mother also told me to tell you to check out a web site advaxis.com, my mother stays on top of the lastest treatment for small cell. She does this becuase my sisters scan was clear, but we know this might come back and my mother refuses to give up on my sister. If there is something out there that will save her she will find it. If there is anything else I can help you with, please let me know. Kerri Caseyk Sat, 21 Jan 2006 00:00:00 GMT What stage are you? My sister is a IIIb. With spreading to the small intestine. We just got the all clear. How long were you in remission? Please let me know. Thanks. Kerri Caseyk Sat, 21 Jan 2006 00:00:00 GMT Hi, First, thanks for the chemo and website info! I was stage 1, and after surgery, they found it in 1 lymph node. The staging didn't change. I don't know if I ever was in remission. After treatment, they cut me loose and said come back in 3 months. That's when it showed up in my pelvis. I have new doctors and I am starting over. One of them specializes in small cell, so that is a big bonus! I probably will be back on chemo this week, so here we go again. I have 3 awesome kids and a wonderful husband, so this CRAP has got to go! I have been in touch with a woman who had this and has been cancer free for about 5 years now! There is hope! Please pray for me and I will for your sister. I have never been one to go to church often (actually rarely), but it just so happens that there is a new reverend at my church and she is wonderful, so I like to go! Take care and I will check back for posts! Grover Sat, 21 Jan 2006 00:00:00 GMT Hi, How are you feeling? Did you have any clue? Does your doctor have a good plan? Sorry for all the questions. Hang in there!!! Grover Sat, 21 Jan 2006 00:00:00 GMT Hi there, I'm 30yrs old and I was diagnosed with small cell carsonoma of the cervix in Dec. 05. I was 29 weeks pregnant and they thought I had a prolapsed fibroid. The tumor had grown from the size of a marble to the size of a small cantelope in 2 weeks before they found out it was cancer. I had a c-section (my baby is doing fantastic), they did a radicle hysterectemy, and removed part of my vagina getting rid of the tumor. They attemped to remove my Lymp nodes where the cancer had spread but where unable to remove them (I had lost to much blood). I started my first round of Chemo 7 days after surgery (Cistiplatin and Etopsiside). I am also doing four rounds of chemo (three days straight every three weeks). I will soon start radiation as well. I finished my second round of chemo last friday and have a CT scan today to see how things are going. I am praying for good news. I have completely changed my diet and am taking glyconietrients as well. I don't know if it will help but anything is worth a try. Has anyone ever heard possibilities as to why some people are more predisposed to this type of cancer? What were some of the sypmtoms that led you to the discovery that cancer was present? Thanks, wishing you all the best Torron Wed, 25 Jan 2006 00:00:00 GMT Torron, My sister had no signs at all. One day she had a small amount of break thru bleeding and went to the emergency room, and the rest is history. Three days later she found herself in a doctors office being told she had stage IIIb cervical small cell carcinoma. The tumor was 9cm. I do wish you all the luck. I have watched my sister go through this treatment since last March, but she just had her PET scan and she is cancer free. This is coming from a 9cm tumor that had spread to her small intestine to remission. There is hope out there, we just have to find it. If you have any questions, please let me know. I hope I can help. There is not a lot out there about this cancer, but believe me my mother has found everything on small cell cancer. Kerri Caseyk Sat, 28 Jan 2006 00:00:00 GMT Hey Casey, I am starting a trial on Monday and one of the drugs is Ironotecan (spelling?). I know that one worked for your sister. Thanks for the info! I had a new CT done the other day and things looked pretty much the same since the beginning of December, w/o treatment. To me that's pretty good news. Looking forward to a better year this year! Grover Sat, 28 Jan 2006 00:00:00 GMT I do hope your this new treatment works for you. Please let me know how you are doing on this new chemo and if it works for you. Kerri Caseyk Wed, 15 Feb 2006 00:00:00 GMT I am praying it works. I have completed one cycle and start the second this week. So far I have tolerated it well. I have a really positive attitude and I hope that it contributes to my recovery. I don't spend a lot of time thinking bad stuff, it's just a waste of energy. Believe me, I have my days! My husband's mother just died of cancer a couple of weeks ago. It's tough right now. Her situation was completely different than mine, but of course my husband is a wreck. Take care and I'll pray for your sister. I have a lot of people to pray for these days! People always say, God never gives you more than you can handle. Sometimes I wonder about that! Grover Tue, 21 Feb 2006 00:00:00 GMT Hi to all, It has been a while since I posted so I just wanted to say, I just had another PET SCAN and am still Clear of cancer. We spoke throughout this thread about not hearing about many long term survivors and I said "We could be those long term survivors". I just wanted to post today to say " Stay posivite....every day we are still alive is another step towards being "long term surviviors". I have lots of nerve damage in my legs and hands as a result of the Cisplatin treatments...but that is really the only major side effect that I am left with and I am working through that each day. I have now been cancer free for 1 year and 2 months !!!!!! The first magical year marker is year two...that would be the "low survival rate marker that I was first told about" the second marker for me will be the 5 year mark. I can't wait to post the positive "mile" markers as we reach them. God Bless all of you on this journey and keep us all informed on how you are doing. Scoterri Scoterri Sat, 18 Mar 2006 00:00:00 GMT My sister was diagnosed with small cell cervical cancer a couple of weeks ago. It has spread to the two lymph nodes in the pelvic region. We went last week to Sloan Kettering in NYC for a second opinion. The prognosis was scarry, i.e. 50% chance of it recurring, etc. Her PET CT scan was clear but the Dr. at Sloan said the cells had likely invaded other areas but are just not showing on the scan yet? She is set to start chemo this week. Etoposide & Cisplatin to start, then surgery, then radiation. She is only 37 and got a PAP test every year since she was young. She has two little children and we are desperate for any info or advice. We heard there has only been 100 cases of this in the US in the last 50 years. Does anyone know of any other message boards, etc. out there that talks about this? It took me forever just to find this one? All help would be appreciated. Thanks. Ikenkris Sun, 19 Mar 2006 00:00:00 GMT I'm going to have my PET on june and I'm feeling the side effects of the drugs too, I've never thought those will come so quickly!!! My hands and my knees are getting this numbness, first I though that it was the cold becasue I live in NY but the Doctor told me that is 'peripheral neuropathy' and it's a side effect of the drug, anyway I really think if there is just 100 with this type of cancer and I have been cancer free for 1 year and 8 months so there's HOPE for ALL of US!!! SO STAY Positive, BE BRAVE!!!! TELL THE WORLD YOUR STORY!!! GOD LOVES YOU Tania Tb210675 Sat, 13 May 2006 00:00:00 GMT That is wonderful you are that far out and cancer free. I still pray everyday that my sister won't have to ever go thru this again. She keeps another attitude about the cancer so if it does come back she will not be upset. I just feel like she has fought so hard and long, that she deserves a wonderful life cancer free. I hope that for everyone with this horriable thing that takes so much from you. I feel it has taken enough from my sister. Sometimes I let my emotions get the better of me when it comes to her. Keeping the attitude you have is great for healing and helping others giving them hope. I know there is hope out there for people with this cancer. I truely feel my sister will be one of them, a long term. Good luck with your test in June let's us know how it turns out. Seattlesister Tue, 16 May 2006 00:00:00 GMT Hey, it's me! I was just doing some research and came across your messages. I didn't just have the break-through bleeding, remember? I was having that back pain, which was vague, but starting to get worse. But I certainly didn't think that it had anything to do with cancer. It's only when the bleeding started that I began to think the back pain may have something to do with my reproductive tract. Meredith Tue, 16 May 2006 00:00:00 GMT Tania, I hope your test come out good. Please be sure and let us know. My sister left a message, that is the first time she has seen this site. I am glad she found it. I want her to know she is not alone with this cancer. Kerri Seattlesister Sun, 21 May 2006 00:00:00 GMT I can't believe all the messages posted to my original search for long term survivors. Even my daughters found this site. How wonderful. I read all your messages. I hear and feel the fear, pain, confusion, but mostly, I feel the love, hope and compassion that binds us all. My beautiful daughter, Meredith, is in remission. It is miracle. They happen everyday. Please, all of you, check out Advaxis.com. They have started the first human trials. This is for a cure, not a vaccine. Read the entire site. You may have been told that small cell cervical cancer is not related to HPV, but there is strong evidence that it is. In one small study, they found that 75% of small cell was positive for HPV18. This is important, because most of the cervical cancer research being done today is center around the HPV virus. Please let us know how you are doing and we will keep you posted on Meredith. My love and prayers are with each and everyone. PJ Wright, Meredith's Mom, Oranjestad Sat, 27 May 2006 00:00:00 GMT Meredith had her scan yesterday. It was CLEAR!!!! This is the second one. We are so thrilled. She will go back in 4 months for another, but for now.....this is great. Seattlesister Tue, 20 Jun 2006 00:00:00 GMT Hi This is sadmom. I was so happy to read about Merediths scan being clear that is wonderful. Please tell her how happy I am for her and your family. I will keep all you in my prayers.Unforunately my daughter Megin was not as lucky. She passed 1/31/05 at the age of 29. She was diagnosed one month after she was married in 2003. She had small cell neuroendocrine carcinoma of the cervix with metz to the lymph nodes. She choose treatment after treatment,always stayed positive but lost the fight. As I was reading the message board it makes my heart full to see that there are actually survivors of this rare form of cancer.I never thought it would be possible after what our family had gone through. But Meredith is one of many survivors. There is hope.Never give up. Hugs Sadmom (Vicky) Sadmom Sun, 01 Oct 2006 00:00:00 GMT I was diagnosed with Stage IV cervical cancer in the early 1990s, when I was twentyish. The docs said they could not rule in or out HPV, but I'm pretty sure that was the cause. I got home chemotherapy (a creme that I used at home... was supposed to be experimental) and had the cells frozen off, and all was well.Now, 17 years later, I have been diagnosed with small cell vaginal cancer. Docs tell me I'm like the 25th person with this type. I asked my old doc if there was an HPV connection, and she said no, but it is just too coincidental for there not to be. I am thinking either the cervical cancer or the treatment left me predisposed toward the small cell.If anyone knows about Advaxis, or the trials, or if it applies to small cell non-cervical, please post. Also, would love to know how Meredith is, if possible. I am so sorry to hear about Megin. I am really scared for myself too. Spiderhead Sun, 20 May 2007 00:00:00 GMT  On 8/21/2005 Oranjestad wrote:I'm looking for long term survivors. My daughter, age 26, has been staged 3B small call cervical cancer. Hi, I am a long term survivor of small cell carcinoma of the cervix.  13 years now, I am 41, and I feel great, yes, very lucky I know.  If anyone ever has any questions I would be happy to answer you.  I wish there was something like this when I was diagnosed, it is so lonley and I couldn't find any info on this type. Jillybean2 Sun, 03 Jun 2007 00:00:00 GMT I was wondering what stage you were when they found it. My younger sister is a stage IIIb. Seattlesister Mon, 04 Jun 2007 00:00:00 GMT  On 6/3/2007 Jillybean2 wrote: On 8/21/2005 Oranjestad wrote:I'm looking for long term survivors. My daughter, age 26, has been staged 3B small call cervical cancer. Hi, I am a long term survivor of small cell carcinoma of the cervix.  13 years now, I am 41, and I feel great, yes, very lucky I know.  If anyone ever has any questions I would be happy to answer you.  I wish there was something like this when I was diagnosed, it is so lonley and I couldn't find any info on this type. i have sent you a private email.  please check in your message center.  thanks!  kristina Ikenkris Fri, 15 Jun 2007 00:00:00 GMT Hey fellow small cell neuroendocrine cervical cancer survivors.  I was diagnosed in Moy 2004.  Had a radical Hyst., and right nephrectomy (renal cell was in my kidney).  I underwent chemo (cisplatin adn Itoposide).  Then internal and external radiation.  At the time they gave me the option of having prophalactic radiation to my brain because the small cell mets. to the lungs and to the brain.  There was no sound clinical proof that that would help prevent spread to the brain so I opted not to have it.  I have no regrets about making that decision because once my treatments were complete I had one year and 6mos.  where I was feeling pretty good.  Then in July 2006 I had a sz. and stuttering, and headaches.  I went to my neurologist who began a work up for seizures and they found a mass in my brain.  I went immediately to surgery and they removed the tumor that was the small cell neuroendocrine carcinoma.  Following surgery I ended up having 6 weeks of daily "whole brain" radiation.  Praise God, I am still here today and loving every day of my life for I know it is a gift from God.  The only thing I want you all to make sure of is that if you have a pet scan of MRI, that you have your brain scanned also.  They were not scanning mine even though I was in the machine and thought they were.  It took having a seizure before they scanned my brain.  Talk to your Dr.'s about that.  God bless you all Scoterri Sun, 19 Aug 2007 00:00:00 GMT This is a stressed mother my daughter debbie has been told she has small cell carcinoma of the cervix. she has had two rounds of chemo and is on her third round ..doctor found this small cell  after the birth of her baby girl in january 2008 she had a infection after the birth on her six week check up after the birth  they done a smer test followed by a biopsy which found the small cell as this is so rare i dont think her doctor everr came across as it normally found in the lungs they started treatment quickly as they said it was very agressive cancer i am so worried as there is not a lot of information regarding this condition any information you can give me would be most helpful thanks stressed mom stressed mum Thu, 29 May 2008 00:00:00 GMT