Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Hi, Leyla. How is your sister-in-law Mehpare doing? I just noticed that you wrote she has four children. They must be taking this with much sadness to see their mother like this. Did she complete round 5/12 of chemo and have the new scan? Hope she is doing better. Prayers for her and all the family. Take care. ~Deb from Kansas eleyla2002 wrote: Thank you Narice. We have friends returning from the US this week and will ask them to get us some buttpaste (what a name, it sure sounds promising : )) Also, Re Erbitux : Mehpare's experience for what it was worth was as follows: She was diagnosed as stage 3 in March 2005 with a tumor in the colon, and was perscribed and underwent 5fu and Radiation . Doctors reccomended she get Erbitux once a week also, but said it was up to her. The first time she tried it ( on the first traumatic day when she took 5fu, and her first day of radiation ) she felt overwhelmed. She also had some skin rashes a few days later and decided to opt out of Erbitux . In retrospect, I wish she had stuck with it. But who knows ?... As it turned out , 6 weeks of radiation and 5fu later , the pet scan revealed 2 spots on the liver , even though her colon tumor had shrunk . Thus she was restaged as 4 just before her colon surgery, which then included a simultaneous liver resection as well. Unfortunately, a month after her surgery as she started her Folfox plus Avastin regimen- the base line scan they took revealed 2 more liver lesions... Needless to say we are holding our breath for her next scan in a week or so, after she completes round 5/12 of chemo. I feel that If chemo is the preferred choice of treatment, perhaps one needs to be as aggressive as possible, with whatever is available incl Erbitux - while weighing the side effects of course. ( Sorry for overstating the obvious - but these problems end up making one lost for words as we all know ) Hoping Phil continues to do well.. I appreciate the support . Leyla > > > > Try A & D ointment and other baby products made for diaper rash. If it is in > the anal area Preparation H or Tucks might help " cool " the area. There is also > a product called > Buttpaste which a lot of people here use. These are available in drug stores > and places like Wal-Mart in the states and are hopefully available to you in > Turkey. > Narice > > > In a message dated 9/30/2005 5:21:41 AM Eastern Standard Time, > eleyla@s... writes: > > > > Does anyone have a better recommendation than Aquaphor for severe > burning sensation in the rectum? Any medicated creams? > Mehpare takes oxycodone as a last resort, but we were wondering > whether the " experts " : ) have any in between suggestions? > > Thanks, & continued prayers and best wishes to all from > Istanbul,Turkey > > Leyla > > eleyla2002, istanbul , turkey > > * sister in law Mehpare 36; > has 4 kids ( age 4-11) > dxd with Stage 4 ccr > with multiple liver mets in Feb 2005. > 6 weeks of radition and 5fu > Underwent colon and liver resection in june . > finished 4th round of Folfox > with tolerable side effects. --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Thanks Deb- Mehpare is doing well at the moment. Round 5/12 passed with relatively little discomfort. I notice that some cycles are better than others and can't figure out why. The neuropathy in her hands is bothering her , to the extent that she cannot handle zippers or buttons etc. Her attitude is ( and has been ) amazing though- she does not complain and makes an effort to stay positive most of the time. Call it denial or what you will, for her this seems the best coping mechanism. Taking things one day at a time, in mind size bits, she believes the treatment will heal her . Hence her children (2 girls and 2 boys aged 4-11) have settled down to accept that mom has good days and bad days , acc to when she receives treatment. Being crowded and close in age they tend to exist in their own world most of the time. The C word was not pronounced to them , just that she was receiving treatment for stomach problems. However, I am certain they may be picking up info here and there. We have a large supportive extended family . So that helps. Whatever their initial fear was, they seem to think this is the way it is and appears manageable ...I sure pray it stays that way . For managing my own worries and fears , I surf the net and benefit from all the info and support I get especially thanks to this group. The scan is looming in the horizon - maybe in 10 days or so . We're keeping our fingers crossed. Best regards Leyla from Istanbul > > > > > > > > Try A & D ointment and other baby products made for diaper rash. If > it is in > > the anal area Preparation H or Tucks might help " cool " the area. > There is also > > a product called > > Buttpaste which a lot of people here use. These are available in > drug stores > > and places like Wal-Mart in the states and are hopefully > available to you in > > Turkey. > > Narice > > > > > > In a message dated 9/30/2005 5:21:41 AM Eastern Standard Time, > > eleyla@s... writes: > > > > > > > > Does anyone have a better recommendation than Aquaphor for severe > > burning sensation in the rectum? Any medicated creams? > > Mehpare takes oxycodone as a last resort, but we were wondering > > whether the " experts " : ) have any in between suggestions? > > > > Thanks, & continued prayers and best wishes to all from > > Istanbul,Turkey > > > > Leyla > > > > eleyla2002, istanbul , turkey > > > > * sister in law Mehpare 36; > > has 4 kids ( age 4-11) > > dxd with Stage 4 ccr > > with multiple liver mets in Feb 2005. > > 6 weeks of radition and 5fu > > Underwent colon and liver resection in june . > > finished 4th round of Folfox > > with tolerable side effects. > > > --------------------------------- > Yahoo! Music Unlimited - Access over 1 million songs. Try it free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Some chemo cycles are much different. I had folfox 6 and after cycle 10 it felt like I had never been on chemo - full of energy and exercising for two weeks. I did not say they were all like that-some were not a lot of fun but 1,2, 3, 10 and 12, were my easiest Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 What is Folfox 6? In a message dated 10/10/2005 2:57:04 PM Pacific Standard Time, asorr55555@... writes: Some chemo cycles are much different. I had folfox 6 and after cycle 10 it felt like I had never been on chemo - full of energy and exercising for two weeks. I did not say they were all like that-some were not a lot of fun but 1,2, 3, 10 and 12, were my easiest [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Leyla, I am glad that Mehphare seems to have a good attitude. I too did notice that some chemo cycles were better then others. Did not understand that either. It got harder towards the last chemo treatments. I thought round 12 would be the hardest but it was an easier one. It might of been easier just becuase I knew it was the last one. Hope all is well. Ingrid > > > > > > > > > > > > Try A & D ointment and other baby products made for diaper rash. > If > > it is in > > > the anal area Preparation H or Tucks might help " cool " the > area. > > There is also > > > a product called > > > Buttpaste which a lot of people here use. These are available in > > drug stores > > > and places like Wal-Mart in the states and are hopefully > > available to you in > > > Turkey. > > > Narice > > > > > > > > > In a message dated 9/30/2005 5:21:41 AM Eastern Standard Time, > > > eleyla@s... writes: > > > > > > > > > > > > Does anyone have a better recommendation than Aquaphor for > severe > > > burning sensation in the rectum? Any medicated creams? > > > Mehpare takes oxycodone as a last resort, but we were wondering > > > whether the " experts " : ) have any in between suggestions? > > > > > > Thanks, & continued prayers and best wishes to all from > > > Istanbul,Turkey > > > > > > Leyla > > > > > > eleyla2002, istanbul , turkey > > > > > > * sister in law Mehpare 36; > > > has 4 kids ( age 4-11) > > > dxd with Stage 4 ccr > > > with multiple liver mets in Feb 2005. > > > 6 weeks of radition and 5fu > > > Underwent colon and liver resection in june . > > > finished 4th round of Folfox > > > with tolerable side effects. > > > > > > --------------------------------- > > Yahoo! Music Unlimited - Access over 1 million songs. Try it free. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Dear Leyla, I believe Mehpare is putting out positive energy to the Universe in order that she might receive her healing. I am doing the same and would be very upset to hear anyone saying I was in denial. You have to believe you will be well and claim you wholeness in your loudest voice. I too had very bad neuropathy in my fingers and feet during treatment. My hands are okay now and my feet get better every day. The best to all of you, Karima Re: Leyla and Mehpare Thanks Deb- Mehpare is doing well at the moment. Round 5/12 passed with relatively little discomfort. I notice that some cycles are better than others and can't figure out why. The neuropathy in her hands is bothering her , to the extent that she cannot handle zippers or buttons etc. Her attitude is ( and has been ) amazing though- she does not complain and makes an effort to stay positive most of the time. Call it denial or what you will, for her this seems the best coping mechanism. Taking things one day at a time, in mind size bits, she believes the treatment will heal her . Hence her children (2 girls and 2 boys aged 4-11) have settled down to accept that mom has good days and bad days , acc to when she receives treatment. Being crowded and close in age they tend to exist in their own world most of the time. The C word was not pronounced to them , just that she was receiving treatment for stomach problems. However, I am certain they may be picking up info here and there. We have a large supportive extended family . So that helps. Whatever their initial fear was, they seem to think this is the way it is and appears manageable ...I sure pray it stays that way . For managing my own worries and fears , I surf the net and benefit from all the info and support I get especially thanks to this group. The scan is looming in the horizon - maybe in 10 days or so . We're keeping our fingers crossed. Best regards Leyla from Istanbul > > > > > > > > Try A & D ointment and other baby products made for diaper rash. If > it is in > > the anal area Preparation H or Tucks might help " cool " the area. > There is also > > a product called > > Buttpaste which a lot of people here use. These are available in > drug stores > > and places like Wal-Mart in the states and are hopefully > available to you in > > Turkey. > > Narice > > > > > > In a message dated 9/30/2005 5:21:41 AM Eastern Standard Time, > > eleyla@s... writes: > > > > > > > > Does anyone have a better recommendation than Aquaphor for severe > > burning sensation in the rectum? Any medicated creams? > > Mehpare takes oxycodone as a last resort, but we were wondering > > whether the " experts " : ) have any in between suggestions? > > > > Thanks, & continued prayers and best wishes to all from > > Istanbul,Turkey > > > > Leyla > > > > eleyla2002, istanbul , turkey > > > > * sister in law Mehpare 36; > > has 4 kids ( age 4-11) > > dxd with Stage 4 ccr > > with multiple liver mets in Feb 2005. > > 6 weeks of radition and 5fu > > Underwent colon and liver resection in june . > > finished 4th round of Folfox > > with tolerable side effects. > > > --------------------------------- > Yahoo! Music Unlimited - Access over 1 million songs. Try it free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Hi, Leyla. Thank you for letting us know how Mehpare is doing. I wish she could become a member of this group. It is comforting to read messages from others. But the neuropathy in her hands might not let her type anything. Please tell her we are all praying for her. All the members of this group, from all around the world. God willing her scan will have some good news for the family. Keep in touch. ~Deb from Kansas eleyla2002 wrote: Thanks Deb- Mehpare is doing well at the moment. Round 5/12 passed with relatively little discomfort. I notice that some cycles are better than others and can't figure out why. The neuropathy in her hands is bothering her , to the extent that she cannot handle zippers or buttons etc. Her attitude is ( and has been ) amazing though- she does not complain and makes an effort to stay positive most of the time. Call it denial or what you will, for her this seems the best coping mechanism. Taking things one day at a time, in mind size bits, she believes the treatment will heal her . Hence her children (2 girls and 2 boys aged 4-11) have settled down to accept that mom has good days and bad days , acc to when she receives treatment. Being crowded and close in age they tend to exist in their own world most of the time. The C word was not pronounced to them , just that she was receiving treatment for stomach problems. However, I am certain they may be picking up info here and there. We have a large supportive extended family . So that helps. Whatever their initial fear was, they seem to think this is the way it is and appears manageable ...I sure pray it stays that way . For managing my own worries and fears , I surf the net and benefit from all the info and support I get especially thanks to this group. The scan is looming in the horizon - maybe in 10 days or so . We're keeping our fingers crossed. Best regards Leyla from Istanbul > > > > > > > > Try A & D ointment and other baby products made for diaper rash. If > it is in > > the anal area Preparation H or Tucks might help " cool " the area. > There is also > > a product called > > Buttpaste which a lot of people here use. These are available in > drug stores > > and places like Wal-Mart in the states and are hopefully > available to you in > > Turkey. > > Narice > > > > > > In a message dated 9/30/2005 5:21:41 AM Eastern Standard Time, > > eleyla@s... writes: > > > > > > > > Does anyone have a better recommendation than Aquaphor for severe > > burning sensation in the rectum? Any medicated creams? > > Mehpare takes oxycodone as a last resort, but we were wondering > > whether the " experts " : ) have any in between suggestions? > > > > Thanks, & continued prayers and best wishes to all from > > Istanbul,Turkey > > > > Leyla > > > > eleyla2002, istanbul , turkey > > > > * sister in law Mehpare 36; > > has 4 kids ( age 4-11) > > dxd with Stage 4 ccr > > with multiple liver mets in Feb 2005. > > 6 weeks of radition and 5fu > > Underwent colon and liver resection in june . > > finished 4th round of Folfox > > with tolerable side effects. --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Greetings to you.... Just to add some info. When my hubby had radiation he did not get much help from them as to what to use on his butt for the radiation burns -- they suggested some aloe vera creams, but what finally helped was something he got from our local ER... It gave him almost instant relief. It is a cream called SSD - and is a 1% silver sulfadiazine cream. Is specifically for burns. I agree with you about aggressive treatment of the disease... Even with that, the dosages can be adjusted so as not to be so toxic to one's system. I had a reaction over time to the Oxoliplatin and it was adjusted so I could tolerate it better, course by then I was taking supplemental potassium, and neupogen shots for low wbc... Praying that your sister responds favorably to all treatments and survives this crazy disease. Jolene Quote Link to comment Share on other sites More sharing options...
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