Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 You both are a beautiful couple!!!!! I love having faces put to the posts. Thanks, Ingrid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 Marty: You may recall that I am right behind you in treatment. I just finished number 6 and I feel like it has taken nearly everything out of me. I wish I was finished with round 11. Congrats to you for making it this far. I am nauseated all the time, everything (including water) tastes like poison, and I have no energy. Please tell me how you have made it this far. I really look to you for encouragement because we are going through the exact same thing. In a message dated 10/22/2005 11:01:10 PM Pacific Standard Time, grogclan@... writes: Len, How many treatments have you had? Mine is getting REAL bad, but it's after 11 rounds. Almost a knockout. Marty On 10/23/2005 6:59:26 AM, colon_cancer_support wrote: > Thank you Ingrid and thank you to Pat and Ingrid for > doing your thing with the emails > I am having a real hard time doing anything today. > The neurapathy in my hands has about made them useless > and my brain is not working well at all. I even > developed a new neurapathy. When I was out in the > garage I was cutting and sanding wood and the dust got > in my eyes. It is my practice to put my head down and > close my eyes real tight to squeeze the dust out when > I have that type of problem. Well, now when I do that > the neurapathy feels like my head is splitting. It > really hurts real bad. > Verta sais " just don't squeeze your eyes > together " . > > It's an old habbit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 In a message dated 10/23/2005 12:44:48 AM Pacific Standard Time, grogclan@... writes: , Chag Sameach!!! You are right. We have almost parallel cases. I think and talk about you all of the time. (that female lawyer in Agoura that works with Heshl that had the disease just like me) How did I make it this far? Is there any choice? Just like running a marathon, you keep putting one foot in front of the next until it ends. You remember that it NEVER, EVER ALWAYS keeps on getting worse. (figure THAT one out through the chemo brain!!!)) All of your feelings and symptoms...I have them, too. It's so frustrating to not be able to drink when you are thirsty...I HATE drinking not-cold things...and the water..I have always said it tastes like sewage since the start of the treatment.!!!! Nausea has started to feel normal now...it's just a matter of HOW nauseous i am on any particular day. The altered taste......yuk!!!!!, and it hasn't even slowed down my eating!!!! Still not losing weight. Round 10, did not get the usual several days of " almost kind of normal " , which was REALLY depressing....I think it was because I got the flu right after the treatment, which really knocked me out. This time (#11), it's one week after, and there is SOME hope of feeling almost decent, but not enough strength for exercise, other than walking, and the neuropathy is REALLY getting bad. (last IV should be on Halloween, disconnect on Nov 1, G-d willing) The numbness in hands and feet is getting pretty bad. It's affecting my typing and mouse usage. Still trying to keep my internet radio show going daily. That kind of gives me a reason to get out of bed in the AM. i just keep on saying to myself, " just one more time, just one more time " , and hoping and praying that the neuropathy goes away with time (no guarantees, you know) Hang in there....I sense that you are a VERY strong person....you can do it... p.s. Maybe we will meet within the next year, even if you do NOT come to Israel (like you should!!), when we come to LA for my oldest son's wedding!!!! We will be staying in Hidden Hills and Malibu. Marty On 10/23/2005 9:08:21 AM, colon_cancer_support wrote: > Marty: > You may recall that I am right behind you in treatment. I just finished > number 6 and I feel like it has taken nearly everything out of me. I wish > I was > finished with round 11. Congrats to you for making it this far. I am > nauseated all the time, everything (including water) tastes like poison, > and I > have no energy. Please tell me how you have made it this far. I really > look to > you for encouragement because we are going through the exact same thing. > > > In a message dated 10/22/2005 11:01:10 PM Pacific Standard Time, > grogclan@... writes: > > Len, > > How many treatments have you had? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 Marty: Thank you so much for your update. The only good thing is that you are at the end. It is finally near. And my research indicates that your neuropathy will likely go away in time. Did your oncologist ever reduce the amount of poison that he/she is giving you? When they reduced my poison by 20% and later eliminated the 5FU bolus, my hand neuropathy was essentially gone. (I still have joint stiffness). However, who knows whether I am now being poisoned enough to kill the cancer cells. I was so sick that by the third day of treatment, I would go into the office in tears. And before that, I had the emergency room event in which I was doubled up in pain due to chemo which had severely irritated my insides. I am trying my best to get through this but I remain afraid of what lies ahead. I want to remain on the Avastin but my research indicates that it may be the cause of my high blood pressure. You are at the end of this nighmare Marty and I will keep that in my daily thoughts. You made it and after November 1, you will start to feel human again. Life will be better this year for your entire family. I am so happy for your son and delighted that we can meet when you travel here for the wedding. I live in Calabasas, just across the 101 Fwy from Hidden Hills. I can't wait to meet you and your family. Keep me posted and thanks again for the update. Chag Sameach! In a message dated 10/23/2005 12:44:48 AM Pacific Standard Time, grogclan@... writes: , Chag Sameach!!! You are right. We have almost parallel cases. I think and talk about you all of the time. (that female lawyer in Agoura that works with Heshl that had the disease just like me) How did I make it this far? Is there any choice? Just like running a marathon, you keep putting one foot in front of the next until it ends. You remember that it NEVER, EVER ALWAYS keeps on getting worse. (figure THAT one out through the chemo brain!!!)) All of your feelings and symptoms...I have them, too. It's so frustrating to not be able to drink when you are thirsty...I HATE drinking not-cold things...and the water..I have always said it tastes like sewage since the start of the treatment.!!!! Nausea has started to feel normal now...it's just a matter of HOW nauseous i am on any particular day. The altered taste......yuk!!!!!, and it hasn't even slowed down my eating!!!! Still not losing weight. Round 10, did not get the usual several days of " almost kind of normal " , which was REALLY depressing....I think it was because I got the flu right after the treatment, which really knocked me out. This time (#11), it's one week after, and there is SOME hope of feeling almost decent, but not enough strength for exercise, other than walking, and the neuropathy is REALLY getting bad. (last IV should be on Halloween, disconnect on Nov 1, G-d willing) The numbness in hands and feet is getting pretty bad. It's affecting my typing and mouse usage. Still trying to keep my internet radio show going daily. That kind of gives me a reason to get out of bed in the AM. i just keep on saying to myself, " just one more time, just one more time " , and hoping and praying that the neuropathy goes away with time (no guarantees, you know) Hang in there....I sense that you are a VERY strong person....you can do it... p.s. Maybe we will meet within the next year, even if you do NOT come to Israel (like you should!!), when we come to LA for my oldest son's wedding!!!! We will be staying in Hidden Hills and Malibu. Marty On 10/23/2005 9:08:21 AM, colon_cancer_support wrote: > Marty: > You may recall that I am right behind you in treatment. I just finished > number 6 and I feel like it has taken nearly everything out of me. I wish > I was > finished with round 11. Congrats to you for making it this far. I am > nauseated all the time, everything (including water) tastes like poison, > and I > have no energy. Please tell me how you have made it this far. I really > look to > you for encouragement because we are going through the exact same thing. > > > In a message dated 10/22/2005 11:01:10 PM Pacific Standard Time, > grogclan@... writes: > > Len, > > How many treatments have you had? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 I can't sleep. I took an Ativan about one and a half hours ago and I am still at the computer. Another problem. Good night. In a message dated 10/23/2005 1:25:58 AM Pacific Standard Time, grogclan@... writes: BTW, , What the heck are you doing awake now?? Go to sleep!!!! Marty On 10/23/2005 10:22:26 AM, colon_cancer_support wrote: > , > > The OTHER good thing (I hope) is that the cancer is still somewhere other > > than in my body!!!! > > They never suggested reducing the dose, and I figured, if > I'm gong to do it, > try and take whatever they can throw at me, for maximum effect. > > Try not to be scared of the treatment. > > There is no doubt that you WILL make it through the treatment. Why waste > your time worrying about things that you can't > do anything about??? (ha, > ha, real easy to say such things...NEVER in my life have I lived THAT > message!!!) > > Hang in there. > > Marty > > On 10/23/2005 10:15:18 AM, colon_cancer_support wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2005 Report Share Posted October 22, 2005 Exactly! There is nothing to watch on TV and I have Dish Satellite. I am surrounded by books that don't hold my interest, even if they are on colon cancer. Enough. And I sleep so much while on chemo, in part, so that I don't have to feel how bad I am feeling. A merry lot, indeed! Enjoy your day, Marty. In a message dated 10/23/2005 1:32:35 AM Pacific Standard Time, grogclan@... writes: I get THAT one, too. Usually as the cycle progresses. I think that, when I feel somewhat OK, I don't want to see the time go by when I might be doing something worthwhile, like being alive and out of bed, I hate to waste the time by sleeping.... Then...there's the days, early in the cycle, of doing almost nothing BUT sleeping, right??? The daily napping doesn't help, either, especially on Shabbat... I have really come to appreciate just how crappy TV is...so much of the time you don't have the concentration to read anything, even junk, so on comes the TV...watch anything that moves...and most of it is garbage Aren't we a merry lot??? Marty On 10/23/2005 10:27:14 AM, colon_cancer_support wrote: > I can't sleep. I took an Ativan about one and a half hours ago and I am > still at the computer. Another problem. > Good night. > > > In a message dated 10/23/2005 1:25:58 AM Pacific Standard Time, > grogclan@... writes: > > BTW, , > > What the heck are you doing awake now?? > > Go to sleep!!!! > > Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 , Chag Sameach!!! You are right. We have almost parallel cases. I think and talk about you all of the time. (that female lawyer in Agoura that works with Heshl that had the disease just like me) How did I make it this far? Is there any choice? Just like running a marathon, you keep putting one foot in front of the next until it ends. You remember that it NEVER, EVER ALWAYS keeps on getting worse. (figure THAT one out through the chemo brain!!!)) All of your feelings and symptoms...I have them, too. It's so frustrating to not be able to drink when you are thirsty...I HATE drinking not-cold things...and the water..I have always said it tastes like sewage since the start of the treatment.!!!! Nausea has started to feel normal now...it's just a matter of HOW nauseous i am on any particular day. The altered taste......yuk!!!!!, and it hasn't even slowed down my eating!!!! Still not losing weight. Round 10, did not get the usual several days of " almost kind of normal " , which was REALLY depressing....I think it was because I got the flu right after the treatment, which really knocked me out. This time (#11), it's one week after, and there is SOME hope of feeling almost decent, but not enough strength for exercise, other than walking, and the neuropathy is REALLY getting bad. (last IV should be on Halloween, disconnect on Nov 1, G-d willing) The numbness in hands and feet is getting pretty bad. It's affecting my typing and mouse usage. Still trying to keep my internet radio show going daily. That kind of gives me a reason to get out of bed in the AM. i just keep on saying to myself, " just one more time, just one more time " , and hoping and praying that the neuropathy goes away with time (no guarantees, you know) Hang in there....I sense that you are a VERY strong person....you can do it... p.s. Maybe we will meet within the next year, even if you do NOT come to Israel (like you should!!), when we come to LA for my oldest son's wedding!!!! We will be staying in Hidden Hills and Malibu. Marty On 10/23/2005 9:08:21 AM, colon_cancer_support wrote: > Marty: > You may recall that I am right behind you in treatment. I just finished > number 6 and I feel like it has taken nearly everything out of me. I wish > I was > finished with round 11. Congrats to you for making it this far. I am > nauseated all the time, everything (including water) tastes like poison, > and I > have no energy. Please tell me how you have made it this far. I really > look to > you for encouragement because we are going through the exact same thing. > > > In a message dated 10/22/2005 11:01:10 PM Pacific Standard Time, > grogclan@... writes: > > Len, > > How many treatments have you had? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 , The OTHER good thing (I hope) is that the cancer is still somewhere other than in my body!!!! They never suggested reducing the dose, and I figured, if I'm gong to do it, try and take whatever they can throw at me, for maximum effect. Try not to be scared of the treatment. There is no doubt that you WILL make it through the treatment. Why waste your time worrying about things that you can't do anything about??? (ha, ha, real easy to say such things...NEVER in my life have I lived THAT message!!!) Hang in there. Marty On 10/23/2005 10:15:18 AM, colon_cancer_support wrote: > Marty: > Thank you so much for your update. The only good thing is that you are at > > the end. It is finally near. And my research indicates that your > neuropathy > will likely go away in time. > Did your oncologist ever reduce the amount of poison that he/she is giving > > you? When they reduced my poison by 20% and later eliminated the 5FU > bolus, > > my hand neuropathy was essentially gone. (I still have joint stiffness). > However, who knows whether I am now being poisoned enough to kill the > cancer > cells. I was so sick that by the third day of treatment, I would go into > the > office in tears. And before that, I had the emergency room event in which > I > was doubled up in pain due to chemo which had severely irritated my > insides. > I am trying my best to get through this but I remain afraid of what lies > ahead. I want to remain on the Avastin but my research indicates that it > may be > the cause of my high blood pressure. > You are at the end of this nighmare Marty and I will keep that in my daily Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 BTW, , What the heck are you doing awake now?? Go to sleep!!!! Marty On 10/23/2005 10:22:26 AM, colon_cancer_support wrote: > , > > The OTHER good thing (I hope) is that the cancer is still somewhere other > > than in my body!!!! > > They never suggested reducing the dose, and I figured, if > I'm gong to do it, > try and take whatever they can throw at me, for maximum effect. > > Try not to be scared of the treatment. > > There is no doubt that you WILL make it through the treatment. Why waste > your time worrying about things that you can't > do anything about??? (ha, > ha, real easy to say such things...NEVER in my life have I lived THAT > message!!!) > > Hang in there. > > Marty > > On 10/23/2005 10:15:18 AM, colon_cancer_support wrote: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2005 Report Share Posted October 23, 2005 I get THAT one, too. Usually as the cycle progresses. I think that, when I feel somewhat OK, I don't want to see the time go by when I might be doing something worthwhile, like being alive and out of bed, I hate to waste the time by sleeping.... Then...there's the days, early in the cycle, of doing almost nothing BUT sleeping, right??? The daily napping doesn't help, either, especially on Shabbat... I have really come to appreciate just how crappy TV is...so much of the time you don't have the concentration to read anything, even junk, so on comes the TV...watch anything that moves...and most of it is garbage Aren't we a merry lot??? Marty On 10/23/2005 10:27:14 AM, colon_cancer_support wrote: > I can't sleep. I took an Ativan about one and a half hours ago and I am > still at the computer. Another problem. > Good night. > > > In a message dated 10/23/2005 1:25:58 AM Pacific Standard Time, > grogclan@... writes: > > BTW, , > > What the heck are you doing awake now?? > > Go to sleep!!!! > > Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 Marty, I haved only had 4 treatments this time Each one lasts 3 weeks Len > > Thank you Ingrid and thank you to Pat and Ingrid for > > doing your thing with the emails > > I am having a real hard time doing anything today. > > The neurapathy in my hands has about made them useless > > and my brain is not working well at all. I even > > developed a new neurapathy. When I was out in the > > garage I was cutting and sanding wood and the dust got > > in my eyes. It is my practice to put my head down and > > close my eyes real tight to squeeze the dust out when > > I have that type of problem. Well, now when I do that > > the neurapathy feels like my head is splitting. It > > really hurts real bad. > > Verta sais " just don't squeeze your eyes > > together " . > > > > It's an old habbit. > For an an extensive collection of colon cancer related links go to http://groups.yahoo.com/group/colon_cancer_support/links or http://ourworld.compuserve.com/homepages/suthercon/ yahoo.com/group/colon_cancer_support/links or http://ourworld.compuserve.com/homepages/suthercon/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 Marty, Did I already answer this? I go in and out of lucidity. I have had 4 treatments so far this time, of xeloda, calcium, magnesium, decadren, avastin, and oxaliplatin. I don't know how many I will have to have. I guess it depends on how much good it does. Len --- Marty and Ellen Grogin wrote: > Len, > > How many treatments have you had? > > Mine is getting REAL bad, but it's after 11 rounds. > Almost a knockout. > > Marty > > > On 10/23/2005 6:59:26 AM, > colon_cancer_support wrote: > > Thank you Ingrid and thank you to Pat and Ingrid > for > > doing your thing with the emails > > I am having a real hard time doing anything today. > > The neurapathy in my hands has about made them > useless > > and my brain is not working well at all. I even > > developed a new neurapathy. When I was out in the > > garage I was cutting and sanding wood and the dust > got > > in my eyes. It is my practice to put my head down > and > > close my eyes real tight to squeeze the dust out > when > > I have that type of problem. Well, now when I do > that > > the neurapathy feels like my head is splitting. It > > really hurts real bad. > > Verta sais " just don't squeeze your eyes > > together " . > > > > It's an old habbit. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2005 Report Share Posted October 25, 2005 , I have the same thing you have if I haven't chewed anything lately. By lately I mean 2 or 3 hours. The first bite is a big surprise and the pain almost knocks me over. After that I'm fine. Good luck with your next 6 treatmants. I hope they work for you. Len --- brencolinmom@... wrote: --------------------------------- In a message dated 10/22/2005 10:00:10 PM Pacific Standard Time, hlen@... writes: Hi Len: My neuropathy is also strange. It is in the sides of my head when I try to take a bite of food. Size doesn't matter; it can be a raisin but when I bite into the food the pain goes up from my jar to the top of my head. I have been having bad headaches the last couple of weeks and my blood pressure (which ordinarily was super low) is now up to 160/95. The chemo is horrible but we really don't have any choice. I cannot imagine getting through the next 6 cycles (having just completed the first 6 and feeling like this has taken forever). Hang in there, Len. It should subside. It is my practice to put my head down and close my eyes real tight to squeeze the dust out when I have that type of problem. Well, now when I do that the neurapathy feels like my head is splitting. It really hurts real bad. Verta sais " just don't squeeze your eyes together " . It's an old habbit. Len --- Ingrid Lowe wrote: --------------------------------- You both are a beautiful couple!!!!! I love having faces put to the posts. Thanks, Ingrid For an an extensive collection of colon cancer related links go to http://groups.yahoo.com/group/colon_cancer_support/links or http://ourworld.compuserve.com/homepages/suthercon/ yahoo.com/group/colon_cancer_support/links or http://ourworld.compuserve.com/homepages/suthercon/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 You probably did, and I probably missed it. I think the usual protocol calls for 12 rounds of treatment. This stuff is pretty standard. Marty On 10/26/2005 12:01:16 AM, colon_cancer_support wrote: > Marty, > Did I already answer this? I go in and out of > lucidity. I have had 4 treatments so far this time, > of xeloda, calcium, magnesium, decadren, avastin, and > oxaliplatin. I > don't know how many I will have to > have. I guess it depends on how much good it does. > Len > > --- Marty and Ellen Grogin > wrote: > > > Len, > > > > How many treatments have you had? > > > > Mine is getting REAL bad, but it's > after 11 rounds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 It's another " standard " reaction to the oxaly-. It usually goes away after the first week or so. I think it has something to do with the salivary glands. Marty On 10/26/2005 12:04:36 AM, colon_cancer_support wrote: > , > > I have the same thing you have if I > haven't chewed > anything lately. By lately I mean 2 or 3 hours. The > first bite is a big surprise and the pain almost > knocks me over. After that I'm > fine. > > Good luck with your next 6 treatmants. I hope they > work for you. > > Len > > --- brencolinmom@... wrote: > > > --------------------------------- Quote Link to comment Share on other sites More sharing options...
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