CancerCompass message board discussion started by twithers on 4/16/2008 http://www.cancercompass.com/message-board/message/all,23107,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, havent posted in a while on my mom... She is about to finish up on her chemo. She has two more rounds.. She had her Cat Scan yesterday and was given very good news as well as her blood test showed good news as well. Dont remember the numbers but they were very low. Im so happy for my mom,, but just couldnt pull myself together to share the same excitement. Im not sure that her and my dad know the faith of this cancer. Im not sure the dr., have explained anything to her. Am i wrong for this, for not being happy for her. I mean i am,, but am still sad. Because i know this cancer as soon as you think you are in remission,, it comes back full force. And i read that when you belly starts to fill up with fluid, does this mean its close to the end?? My mom has stage 4 PPC. It was in her liver, stomach  and in spine and lyph nodes. She seems to be wearing thin to me from the chemo.. But still has the perfect attitude, which i guess is all she needs.. Shes great seeing her so strong and still living and doing the things she loves. It just really makes her tired doing these things and then is in bed for a couple days after. Anyway,, thanks for sharing all your stories.. twithers Wed, 16 Apr 2008 00:00:00 GMT I completely understand your feelings.  Your mother seems to be faring well which is excellent.  If she is feeling well and her spirits are good, I'd suggest you help keep that up.  A good positive attitude goes along way and she needs that to fight this terrible disease!  Knowing how insidious it is, I recommend you keep an eye on her and her progress, physical health and various symptoms to see if she has a relapse.  I've seen many posts on this site where people have been in remission for years so don't lose hope!! Maxalliemom Thu, 17 Apr 2008 00:00:00 GMT  On 4/16/2008 twithers wrote:Hello, havent posted in a while on my mom... She is about to finish up on her chemo. She has two more rounds.. She had her Cat Scan yesterday and was given very good news as well as her blood test showed good news as well. Dont remember the numbers but they were very low. Im so happy for my mom,, but just couldnt pull myself together to share the same excitement. Im not sure that her and my dad know the faith of this cancer. Im not sure the dr., have explained anything to her. Am i wrong for this, for not being happy for her. I mean i am,, but am still sad. Because i know this cancer as soon as you think you are in remission,, it comes back full force. And i read that when you belly starts to fill up with fluid, does this mean its close to the end?? My mom has stage 4 PPC. It was in her liver, stomach  and in spine and lyph nodes. She seems to be wearing thin to me from the chemo.. But still has the perfect attitude, which i guess is all she needs.. Shes great seeing her so strong and still living and doing the things she loves. It just really makes her tired doing these things and then is in bed for a couple days after. Anyway,, thanks for sharing all your stories..I'm happy that your Mom is doing well.  I know exactly how you feel.  My mom has been done with chemo since Dec.06, and has been in remission.  Recently they found some hot spots in her abdomen and chest area.  But they told her that they won't do any chemo yet..just stay with the tamoxofin she has been on since the end of chemo.I don't even know if she is still considered in remission and don't ask.  She is so happy about no chemo and feels great.  I'm worried though and wonder why they don't do more.  I feel like I'm always waiting for the other shoe to drop. But i won't tell her that, she is so positive and just looking to enjoy whatever time she has.  How old is your mother?? Mine is 69  and I can't imagine taking a breath when she is gone. When she was on the chemo it was so hard to see this strong woman become so weak and small.  It took about a month or so after the last treatment for her to really feel like her old self. Now she is busy and doing all of the things she loves...i wish the same for your mom.  momof3boys Thu, 17 Apr 2008 00:00:00 GMT Hi, wow since 06 huh thats great. I hope her spots now are able to go away again if they consider chemo again. Has she had surgery yet? My mom is 61. Im like you seems like im always waiting for the other shoe to drop as well. And i worked three years in a nursing home so it sorta put that cold sheild over me when it comes to this. Even as my grandmother passed,, i expected the worst.. Scary when you set yourself up this way.. I wish i could just be as happy as she is! She still has tumors 1 inch size in her nodes they are trying to shrink before they do surgery. Everything else has gone down. I would love to keep in touch with you and share our stories and support with each other. God bless you and your mom.. twithers Thu, 17 Apr 2008 00:00:00 GMT My mom turns 73 tomorrow!  She starts her new chemo drug in 10 days and we are all praying that it works.  Her stomach continues to distend due to the growing fluid and it's making her very uncomfortable and not her usual active, vibrant self.  I agree that it's so hard to see such a strong woman become so weak.  My family and I all can't wait for the new chemo to start and hopefully take effect quickly so she can regain a better comfort level.  The doctor also said he can put in a catheter and drain the fluid to give her comfort, but it will keep coming back unless the chemo works.  Maxalliemom Thu, 24 Apr 2008 00:00:00 GMT  On 4/17/2008 twithers wrote:Hi, wow since 06 huh thats great. I hope her spots now are able to go away again if they consider chemo again. Has she had surgery yet? My mom is 61. Im like you seems like im always waiting for the other shoe to drop as well. And i worked three years in a nursing home so it sorta put that cold sheild over me when it comes to this. Even as my grandmother passed,, i expected the worst.. Scary when you set yourself up this way.. I wish i could just be as happy as she is! She still has tumors 1 inch size in her nodes they are trying to shrink before they do surgery. Everything else has gone down. I would love to keep in touch with you and share our stories and support with each other. God bless you and your mom..Hi twithers! Haven't been on in awhile...sometimes I like to pretend this isn't happening.. How is your mom doing???  Mine is starting chemo again next week and changing some drugs to hopefully keep her hot spots from growing.. She is still feeling good but is basically out of remission.  I think about you whenever I check out the board  and hope you and mom are doing well momof3boys Sun, 25 May 2008 00:00:00 GMT Hi Momof3boys, My mom has one more chemo tomarrow then will do more cat scans and consider surgery. She had a cat scan done about three chemos ago, which are every three weeks and they did see some shrinkage. She was really happy, ~ bless her heart~... So, she is really enemic and was given the medicine to help that. So she is really tired and stuff. So your mom is out of remission huh.. How is she doing? How are you doing? Thanks for dropping in a line! I too dont come on as often as i should.. My two older ones and my two little ones keep me busy...lol.. I  hope you had a good Memorial Day,, we spent out with mom it was nice.. Talk to you later.. God Bless Ya!!! twithers Mon, 26 May 2008 00:00:00 GMT Well, my mom went and had chemo yesterday, thinking it would it for a while. Well they told her even after surgery she will have to continue chemotherapy. They will only be able to remove the cluster of cysts in her stomach and not be able to touch the other spots which are her liver, nodes and spine. So, to me that dont sound good. Havent really talked to her about it.. So what is yall opinion on this? I would like to hear. I think so far she has had three sets of three rounds of chemo all six hours long. twithers Wed, 28 May 2008 00:00:00 GMT My mom will finish up the 2nd round of her new chemo drug today.  She is on topotecan now (the 3rd type of chemo for her).  She gets it every day for 5 straight days and then 2 weeks off and then starts again.  Will be for 5-6 rounds.  Today is the last day of her 2nd round.  The first round was tough and she definitely was very fatigued aftewards- required 2 pints of blood and shots of procrit to get her hemoglobin and white blood cells up.  She is feeling much better now and much more energetic.  Great news is that they told her yesterday that he CA 125 is down to 485.  It was at 785 the day she started the first round so this is great news and seems to indicate that this drug is working. Maxalliemom Fri, 30 May 2008 00:00:00 GMT Hi All!I just found this site and have read the wonderful messages people have left, so I thought I could share and benefit from your experiences.  My name is Maggie, I'm 27 and my Mom was diagnosed with PPC last june of 2007.  She was diagnosed when she was having shortness of breath and was found to have a pleural effusion of 2 liters.  The next few days in the hospital were very scary!  The fluid came back positive for malignancy and we were off from there.  We met with an oncologist and oncologic-gyno.  She underwent  rounds of chemo (Taxol and Carboplatinum), before having surgery to remove a large portion of her omentun and total hysterectomy, then another three rounds. At her time of diagnosis I believe her Ca-125 was in the thousands and currently I am happy to say it is 9.  However on our last 3 month CT she has a mass near her Colon which is borderline on a PET scan, so we go for surgery this monday june 2, to have it removed and sent to test the mass for malignancy and tested against several diff. chemo meds.  Although her CA-125 didn't rise it could still be cancer of a different sort which my god I hope not!I just thought I'd share my experience with you and get some feed back!  We are also looking into some trials with different types of chemo using heated meds washed into the abdomen. I am also a nurse which actually makes this even more difficult because I feel being in this field robs you of some of your optomism.  I know we can fight it though!Maggie RN maggieRN Sun, 01 Jun 2008 00:00:00 GMT i'd be interested in hearing more about the heated meds you refer to.  I haven't heard of that.  My mom had carboplatin/Taxol which worked well for first time. Then after she left remission, they tried Doxil which didn't work.  Now she is doing topotecan which so far seems to be helping reduce the cancer levels.  We are cautiously optimistic. Maxalliemom Mon, 02 Jun 2008 00:00:00 GMT  On 6/1/2008 maggieRN wrote:Hi All!I just found this site and have read the wonderful messages people have left, so I thought I could share and benefit from your experiences.  My name is Maggie, I'm 27 and my Mom was diagnosed with PPC last june of 2007.  She was diagnosed when she was having shortness of breath and was found to have a pleural effusion of 2 liters.  The next few days in the hospital were very scary!  The fluid came back positive for malignancy and we were off from there.  We met with an oncologist and oncologic-gyno.  She underwent  rounds of chemo (Taxol and Carboplatinum), before having surgery to remove a large portion of her omentun and total hysterectomy, then another three rounds. At her time of diagnosis I believe her Ca-125 was in the thousands and currently I am happy to say it is 9.  However on our last 3 month CT she has a mass near her Colon which is borderline on a PET scan, so we go for surgery this monday june 2, to have it removed and sent to test the mass for malignancy and tested against several diff. chemo meds.  Although her CA-125 didn't rise it could still be cancer of a different sort which my god I hope not!I just thought I'd share my experience with you and get some feed back!  We are also looking into some trials with different types of chemo using heated meds washed into the abdomen. I am also a nurse which actually makes this even more difficult because I feel being in this field robs you of some of your optomism.  I know we can fight it though!Maggie RNHi LadiesHope everyone is doing well. Twithers , I hope your Mom's situation is improving..I will keep you in my prayers. I saw my mother recently for a long weekend at a family reunion.  She looked great and seem to feel great as well.  She was set to have start the topetecan last week but told me that the doctor thought she looked so good and felt so good that they wouldn't do the chemo yet.  Her number was up a bit but it's still under  50.  I am a little freaked out but don't want to be a downer when she is happier than can be to not do it. I talked to my stepdad on Fathers Day and he is a bit concened as well.  They are concerned about the cancer in her chest area but I guess it's not growing .  I thought the point was to attack things quickly.  Maybe they are waiting until she gets back from our family vacation in  July so that she can fully enjoy it.  I do feel that she has faired pretty well in her fight against this cancer.  They found it early and so far her doctors have done well to keep her this well for 2 years now.  So I have to trust that they are doing whats best for her.   Maggie,  I had read that you mentioned the heated meds.  I know my mother received both doxil and taxol in her first rounds of chemo after debulking surgery.  They were given to her through a port directly into the abdomen and then  she was tilted around to distribute the drugs.  Don't know if they were heated or if this is the same procedure you were commenting on...I can ask.  She responded well and  was in remission for over a year.  Ca125 has been as high as 1800 and as low as 12.  REcently a man I know through work has been diagnosed with a rare and inoperable malignant brain tumor.  HIs situation is grave and he is having radiation everyday.  Now he is in hospital due to abscess's in his legs that need to drain and has developed pneumonia, it's only been 2 months.  And so I thank God that I have the time i have...even though I know the inevitable outcome.  Mom tells me that the doctors have assured her that we can play this chemo game for a long time.  I hope so, but I'm scared for her to have to deal with the pain etc.  of it all.  Good bless you all. momof3boys Sun, 22 Jun 2008 00:00:00 GMT Mom had pet scan on Monday, called her on Tuesday...Chemo on Wednesday.. Makes me wonder why they didn't do it on schedule last week as planned when she was prepared. Here we go again.  momof3boys Fri, 27 Jun 2008 00:00:00 GMT Hi momof3boys~                   Well my mom had her surgery on the 14th of July. She did really well. The cancer in her liver was gone and her nodes shrunk to the size they want them. They did remove part of her colon and will have that tested. And i believe the cysts that where in her stomach were gone. Her Dr. was very please at what she saw for a PPC patient. My mom was a stage four patient at the beginning of all this. I know what it is like being optomistic have worked in health care field. Im the only one in the family this way and i feel horrible well besides my oldest sis, she worked in radiology. But i have met other people battling there own battles or there childrens and there hope is so inspiring to me. My mom will have three more chemos after this surgery sometime. Right now she is just recovering in the hospital. Take care ladies... And God Bless. twithers Fri, 18 Jul 2008 00:00:00 GMT Hello everyone!  Just back from vacation with my mom and the rest of the immediate family.  Spent a week on the beach in San Diego.  My mother was tired in the beginning.  She had chemo on Wed. and they drove over on that following Saturday...her worst day.  But by Monday she was feeling much better. I did find from hanging out with my brothers and sister in law that I do get  abbreviated information about her situation.  I think that's because Mom chooses to keep some things from me because she knows how upset I will be and far away from her. For instance on her first dose of the topetecan someone screwed something up and her white blood cells were nil.  Not nice to hear from your brothers wife that "they almost killed her".  Also when the cancer came back it appeared to be in new places and my stepdad is freaking out and getting her all freaked out.  But she started to research the Topetecan and how wonderful it has been since being introduced just last year and she is feeling positive again...so  I'm holding on to that.  Twithers...great news about your mom, I'm so happy for you.  Her treatment really appears to be doing it's job.  Just wondering where you all live?  I"m in Denton Tx, Mom lives in Sedona, Az. I'll keep hoping for good news for all of us.michelle momof3boys Sat, 02 Aug 2008 00:00:00 GMT Hi MichelleJust read your post and wanted to let you know that I am sort of in the same situation. My husband is in the Navy and we live in Mississippi. My mother is in St. Louis Missouri. So we are quite a distance from each other. She was diagnosed with PPC stage IV back in April and is currently going through chemo treatments. She had her entire omentum removed in April along with her ovaries which by the way, the ovaries were clear of cancer. Her CA125 started at 701 and is down to 56 after 3 chemo treatments of Carbo/Taxol.  I talk to my mom daily and sometimes wonder if I, too, am hearing the "full" story.  I know that my mom does not like days when she feels bad but I think she just tries not to talk or think about it and it gets her through that day. She chose not to know her prognosis and I truly feel that it helps her keep high spirits. Although myself and my siblings know every detail going on, it seems like having my mom not know every little detail is helping her get through this tremendously. I've also learned to let the cancer patient express themselves when and if they want to. But I realize its hard to be so far away and not know what the heck is happening. It is hard to decide when talking to my mom, whether I want to ask her questions about her treatment or how she is feeling or just let her bring them up herself. If she is having a good day, I certainly don't want to start talking about this unbelievable disease.  My mom's attitude is this" I have cancer.... cancer does not have me."  And he seems to keep her going. I also keep in touch closely with my mom's nurse. Just a suggestion, but maybe you could do the same. And possibly, you will hear more about what is really going on with your mom and not have to wonder or wait to hear it from your siblings. Go straight to the source. I hope I have helped in some way. So glad your mom could make it to San Diego. My son and I are heading to San Diego next week for a little trip. My mom has a trip to Canada planned for the end of August but so far her doctor has not given her the Okay. We're crossing our fingers.Take careKate  6murphys Thu, 07 Aug 2008 00:00:00 GMT  On 8/7/2008 6murphys wrote:Hi MichelleJust read your post and wanted to let you know that I am sort of in the same situation. My husband is in the Navy and we live in Mississippi. My mother is in St. Louis Missouri. So we are quite a distance from each other. She was diagnosed with PPC stage IV back in April and is currently going through chemo treatments. She had her entire omentum removed in April along with her ovaries which by the way, the ovaries were clear of cancer. Her CA125 started at 701 and is down to 56 after 3 chemo treatments of Carbo/Taxol.  I talk to my mom daily and sometimes wonder if I, too, am hearing the "full" story.  I know that my mom does not like days when she feels bad but I think she just tries not to talk or think about it and it gets her through that day. She chose not to know her prognosis and I truly feel that it helps her keep high spirits. Although myself and my siblings know every detail going on, it seems like having my mom not know every little detail is helping her get through this tremendously. I've also learned to let the cancer patient express themselves when and if they want to. But I realize its hard to be so far away and not know what the heck is happening. It is hard to decide when talking to my mom, whether I want to ask her questions about her treatment or how she is feeling or just let her bring them up herself. If she is having a good day, I certainly don't want to start talking about this unbelievable disease.  My mom's attitude is this" I have cancer.... cancer does not have me."  And he seems to keep her going. I also keep in touch closely with my mom's nurse. Just a suggestion, but maybe you could do the same. And possibly, you will hear more about what is really going on with your mom and not have to wonder or wait to hear it from your siblings. Go straight to the source. I hope I have helped in some way. So glad your mom could make it to San Diego. My son and I are heading to San Diego next week for a little trip. My mom has a trip to Canada planned for the end of August but so far her doctor has not given her the Okay. We're crossing our fingers.Take careKate Hi Kate,     It does sound like our mothers are very much alike in the way they are dealing with the day to day.  My mom is fully aware of the prognosis though.  I think this second time around has freaked her out a bit.Although  she was in remission almost a year, we were all hoping for a lot longer and I think it shocked her.  Like " it really does come back".  It doesn't help that she has been having a hard time with the topetecan she is getting.  The first time she had it her white blood count was almost nil...she could have died. She was due to have it on the 11th but they couldn't due it because of the white bllod count being too low still.  So she is getting a shot of procrit ( i believe) everyday in an effort to get it up.   I am worried because she needs the chemo to fight this thing and now she can't have it.  Hopefully by Monday she will be on track.  I would love to be able to speak to her nurse or Dr.but I'm not sure how to go about that.  I've never met any of them or been to appointments with her.  I don't know if they would give me any info.  Plus I would probably have to ask her permission and I'm trying to pretend I'm not totally freaking out...which I am.  Now I'm scared of the chemo AND the cancer.  I'm so afraid that there will be some drastic turn for the worst...and I can't let her feel that.  Thanks for the message.  Hope your mother makes her trip to Canada.Take care, Michelle   momof3boys Thu, 14 Aug 2008 00:00:00 GMT  On 8/14/2008 momof3boys wrote: On 8/7/2008 6murphys wrote:Hi MichelleJust read your post and wanted to let you know that I am sort of in the same situation. My husband is in the Navy and we live in Mississippi. My mother is in St. Louis Missouri. So we are quite a distance from each other. She was diagnosed with PPC stage IV back in April and is currently going through chemo treatments. She had her entire omentum removed in April along with her ovaries which by the way, the ovaries were clear of cancer. Her CA125 started at 701 and is down to 56 after 3 chemo treatments of Carbo/Taxol.  I talk to my mom daily and sometimes wonder if I, too, am hearing the "full" story.  I know that my mom does not like days when she feels bad but I think she just tries not to talk or think about it and it gets her through that day. She chose not to know her prognosis and I truly feel that it helps her keep high spirits. Although myself and my siblings know every detail going on, it seems like having my mom not know every little detail is helping her get through this tremendously. I've also learned to let the cancer patient express themselves when and if they want to. But I realize its hard to be so far away and not know what the heck is happening. It is hard to decide when talking to my mom, whether I want to ask her questions about her treatment or how she is feeling or just let her bring them up herself. If she is having a good day, I certainly don't want to start talking about this unbelievable disease.  My mom's attitude is this" I have cancer.... cancer does not have me."  And he seems to keep her going. I also keep in touch closely with my mom's nurse. Just a suggestion, but maybe you could do the same. And possibly, you will hear more about what is really going on with your mom and not have to wonder or wait to hear it from your siblings. Go straight to the source. I hope I have helped in some way. So glad your mom could make it to San Diego. My son and I are heading to San Diego next week for a little trip. My mom has a trip to Canada planned for the end of August but so far her doctor has not given her the Okay. We're crossing our fingers.Take careKate Hi Kate,     It does sound like our mothers are very much alike in the way they are dealing with the day to day.  My mom is fully aware of the prognosis though.  I think this second time around has freaked her out a bit.Although  she was in remission almost a year, we were all hoping for a lot longer and I think it shocked her.  Like " it really does come back".  It doesn't help that she has been having a hard time with the topetecan she is getting.  The first time she had it her white blood count was almost nil...she could have died. She was due to have it on the 11th but they couldn't due it because of the white bllod count being too low still.  So she is getting a shot of procrit ( i believe) everyday in an effort to get it up.   I am worried because she needs the chemo to fight this thing and now she can't have it.  Hopefully by Monday she will be on track.  I would love to be able to speak to her nurse or Dr.but I'm not sure how to go about that.  I've never met any of them or been to appointments with her.  I don't know if they would give me any info.  Plus I would probably have to ask her permission and I'm trying to pretend I'm not totally freaking out...which I am.  Now I'm scared of the chemo AND the cancer.  I'm so afraid that there will be some drastic turn for the worst...and I can't let her feel that.  Thanks for the message.  Hope your mother makes her trip to Canada.Take care, Michelle  HI MichelleJust got back from San Diego and read your message. I hope this message finds you and your mom doing well.  I have read on several message boards on this web page about people who are chemo resistant. Sounds like there are other options but I don't quite understand it all or know anything about it.  My mom's oncologist has never mentioned anything different than the carbo/taxol she is receiving but with the likelihood of a recurrence I hope he mentions these other options to her. She had an extremely bad reaction to her last chemo and did not even remember the day of chemo nor the next two days. She stayed with my sister for over a week, which she hadn't had to do with any of her other treatments. Some of these things they are giving our moms just seem so potent.  My mom's white blood cells have never been low but her platelets have. Nothing they can do about the platelets but I think there may be alot of foods your mom can eat to help with the white blood cells. You may be able to find some nutrition info on the web or at the cancer center. My mom is in Canada right now. She's been there since Saturday. My sister went with for half the week and came home yesterday. My mom is still there with my cousin. But my sister said my mom was doing great!!! Even did a little hiking. I know what you mean about being scared about all this. I'm not sure it has even really sunk in yet with me. I cannot imagine what life would be without my mom. I hope our moms are the exception. There is no reason why they can't be. Stay strong for your mom and keep in touch.Take careKate  6murphys Thu, 28 Aug 2008 00:00:00 GMT Dear Kate,      Thanks for your message.  Sorry I have taken so long to respond, work has been very busy plus getting my kids all back to school.  My mom has really been doing well with the chemo these last few weeks..seems they got the blood issues under control and she is going right along on schedule now and feeling pretty good...she is about halfway through this round.  She has purchased tickets to fly out here to Texas for Thanksgiving with us and I'm so looking forward to that.  Sounds like your mother is doing well and having a great vacation.  These are the things that keeps them going.  I am hoping my family might also go back home for Christmas..as I feel the need to see her as often as possible.  I'm anxious for some sort of update on how this chemo is doing but I guess I'll have to wait until she is finished with this round.  I'm getting more and more freaked out since she has been battling this since spring 2006 and I have read everything I can find and know the odds.  I find that I need about a good 5 minute cry everyday just to get it out and get on with the day.  I hope that things are going well for you and your family and that you enjoyed San Diego as much as I did.  I hope that rest of you ladies and loved ones are doing well.  Praying for some good results for all take care,Michelle momof3boys Thu, 11 Sep 2008 00:00:00 GMT