Daily digest for March 30th, 2013 [CancerCon
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Here's your daily digest, SusansSpecial
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Items you may find interesting
Patty replied to discussion "Herceptin question: Hi folks! I'm wondering if any of you had to [...]" in groupBreast Cancer at 12:15 am, March 30th, 2013
Maybe weekly doses would be better. That is what I did for my year plus on Herceptin. I seemed to tolerate it except hot flashes during infusion and side effects such as drippy nose and occasional diarrhea. Many other side effects but I am sure taxol was the cause. They stopped when taxol stopped except neuropathy that I still have 4 years later. - Reply to this post - View
Maybe weekly doses would be better. That is what I did for my year plus on Herceptin. I seemed to tolerate it except hot flashes during infusion and side effects such as drippy nose and occasional diarrhea. Many other side effects but I am sure taxol was the cause. They stopped when taxol stopped except neuropathy that I still have 4 years later. - Reply to this post - View
cathyolivas replied to discussion "I had a mastectomy in July of 2010, with 17 lymph nodes [...]" in groupBreast Cancer at 12:03 am, March 30th, 2013
You definately are NOT crazy! The pain is real. I had a mastectomy w/25 lymph nodes removed, 20 positive in Oct. 2007. I do have pain that shoots down my arm, in my arm pit and my chest. Somedays it is really bad, but just like everyone else has said, I would rather feel the pain and still be alive to love on my children and grandchildren. Yes I do compain about it, I think we have earned alittle whinning on a bad day, just make the bad days fewer and fewer. I will keep you in my thoughts and prayers. Remember you are a FIGHTER!!!!!!! - Reply to this post - View
You definately are NOT crazy! The pain is real. I had a mastectomy w/25 lymph nodes removed, 20 positive in Oct. 2007. I do have pain that shoots down my arm, in my arm pit and my chest. Somedays it is really bad, but just like everyone else has said, I would rather feel the pain and still be alive to love on my children and grandchildren. Yes I do compain about it, I think we have earned alittle whinning on a bad day, just make the bad days fewer and fewer. I will keep you in my thoughts and prayers. Remember you are a FIGHTER!!!!!!! - Reply to this post - View
Susy RN started discussion "Is there anyone out there diagnosed with Waldenstroms Macroglobulinemia?" in group Non-Hodgkin's Lymphoma at 10:06 pm, March 29th, 2013
Is there anyone out there diagnosed with Waldenstroms Macroglobulinemia? - Reply to this post - View
Is there anyone out there diagnosed with Waldenstroms Macroglobulinemia? - Reply to this post - View
Christine Martino-Fleming posted: at 9:03 pm, March 29th, 2013
I recently replied to a post about the virtual silence about gyn cancer. I am also wondering if another silent phenomenon is PTSD amongst cancer survivors. I went to my doctor and my gyn onc and tried to explain my symptoms, but they weren't recognized. I am a psychotherapist by training and I had a lot of difficulty recognizing my own symptoms because you just don't hear about PTSD in the context of medical trauma. I am wondering if anyone else has experienced panic attacks, flashbacks, nightmares, mood changes, hypervigilance, and negative reactions to certain types of touch and experiences? The doctors in my life just wanted to talk about medications, surgery, and stats. No one talked to me about these symptoms. My doctors are [...] - Reply to this post - View
I recently replied to a post about the virtual silence about gyn cancer. I am also wondering if another silent phenomenon is PTSD amongst cancer survivors. I went to my doctor and my gyn onc and tried to explain my symptoms, but they weren't recognized. I am a psychotherapist by training and I had a lot of difficulty recognizing my own symptoms because you just don't hear about PTSD in the context of medical trauma. I am wondering if anyone else has experienced panic attacks, flashbacks, nightmares, mood changes, hypervigilance, and negative reactions to certain types of touch and experiences? The doctors in my life just wanted to talk about medications, surgery, and stats. No one talked to me about these symptoms. My doctors are [...] - Reply to this post - View
Christine Martino-Fleming replied to update "@dianeo, You posted today and mentioned that you [...]" at 8:46 pm, March 29th, 2013
This is so true! I didn't even know I was experiencing concerning symptoms because how would I know? You always hear about checking for lumps or changes in your breasts, but I have never once heard about uterine or ovarian health. How do we change this ladies? How can our voice be heard? Thanks to all for this great discussion. Christine - Reply to this post - View
This is so true! I didn't even know I was experiencing concerning symptoms because how would I know? You always hear about checking for lumps or changes in your breasts, but I have never once heard about uterine or ovarian health. How do we change this ladies? How can our voice be heard? Thanks to all for this great discussion. Christine - Reply to this post - View
Christine Martino-Fleming replied to update "@dianeo, You posted today and mentioned that you [...]" at 8:43 pm, March 29th, 2013
I think I have heard this story before!!! Wait a minute - this is me! I had been experiencing symptoms for years and sought help from several doctors. One gyn told me that if I don't mind not getting my period, there is no problem. Another gyn told me that since I am in a same-sex long term relationship that I don't need PAPs anymore. Another doctor couldn't do a PAP because I was still in my cycle, even though I didn't bleed at all. Hello??? My last gyn all but wrote me off until I insisted on a D&C with hysteroscopy. Even after that procedure, she didn't think anything was wrong. Then I went for my follow up from the procedure and I was [...] - Reply to this post - View
I think I have heard this story before!!! Wait a minute - this is me! I had been experiencing symptoms for years and sought help from several doctors. One gyn told me that if I don't mind not getting my period, there is no problem. Another gyn told me that since I am in a same-sex long term relationship that I don't need PAPs anymore. Another doctor couldn't do a PAP because I was still in my cycle, even though I didn't bleed at all. Hello??? My last gyn all but wrote me off until I insisted on a D&C with hysteroscopy. Even after that procedure, she didn't think anything was wrong. Then I went for my follow up from the procedure and I was [...] - Reply to this post - View
Tonya Loveherselph-keen posted: at 8:26 pm, March 29th, 2013
Taking tamoxifen im swelling up gaining weight amd joints aching what shpuld i do - Reply to this post - View
Taking tamoxifen im swelling up gaining weight amd joints aching what shpuld i do - Reply to this post - View
SeattleChris replied to discussion "Status after bilateral mastectomy: NED, Remission or Cured?" in group Breast Cancer at 7:51 pm, March 29th, 2013
First 3mo check-up with this round - still dancing with NED! He can be fickle but I'm happy to accept his invitation at any time :) - Reply to this post - View
First 3mo check-up with this round - still dancing with NED! He can be fickle but I'm happy to accept his invitation at any time :) - Reply to this post - View
Stephen B. Hatcher posted: at 7:13 pm, March 29th, 2013
In 2011 I was diagnosed with multiple myeloma. I went through spine surgery to remove a large tumor, 4 months of chemo, radiation and then finally a stem cell transplant in 2012. I am in remission and the plan is to keep it that way! I wrote a book based on journal entries and emails that I sent to folks who were praying for me and encouraging me in many ways. The book talks about not only what I experienced physically, but also what God was doing in my heart along the way. Many friends have used the book to reach out to other folks who are battling cancer, showing them how God moves inside of their trials. You can take a look at the [...] - Reply to this post - View
In 2011 I was diagnosed with multiple myeloma. I went through spine surgery to remove a large tumor, 4 months of chemo, radiation and then finally a stem cell transplant in 2012. I am in remission and the plan is to keep it that way! I wrote a book based on journal entries and emails that I sent to folks who were praying for me and encouraging me in many ways. The book talks about not only what I experienced physically, but also what God was doing in my heart along the way. Many friends have used the book to reach out to other folks who are battling cancer, showing them how God moves inside of their trials. You can take a look at the [...] - Reply to this post - View
ridersdad replied to update "I am going in for my 3rd bladder cancer surgery on the [...]" at 7:00 pm, March 29th, 2013
Well, I made it through. They are going to start some type of treatment in about a month. (they want to give my bladder time to heal). This is an effort to SLOW down the cancer....I have a Dr. or test appointment every week for like the next 5 weeks. - Reply to this post - View
Well, I made it through. They are going to start some type of treatment in about a month. (they want to give my bladder time to heal). This is an effort to SLOW down the cancer....I have a Dr. or test appointment every week for like the next 5 weeks. - Reply to this post - View
Jean Willoughby Moates posted: at 6:23 pm, March 29th, 2013
I'm wondering if other mastectomy survivors regret not having a double mastectomy instead of a single? - Reply to this post - View
I'm wondering if other mastectomy survivors regret not having a double mastectomy instead of a single? - Reply to this post - View
Coral Poole-Clark replied to discussion "Herceptin question: Hi folks! I'm wondering if any of you had to [...]" in group Breast Cancer at 5:54 pm, March 29th, 2013
Not long after I began the every 3 week course of herceptin, my heart had become enlarged and I had to stop. It's been nearly 3 years now, and my tumor markers remain in the normal range. My oncologist has never suggested going back on it again, even though I tolerated the weekly doese without a problem. - Reply to this post - View
Not long after I began the every 3 week course of herceptin, my heart had become enlarged and I had to stop. It's been nearly 3 years now, and my tumor markers remain in the normal range. My oncologist has never suggested going back on it again, even though I tolerated the weekly doese without a problem. - Reply to this post - View
Miss Brenda replied to update "cancer" at 5:13 pm, March 29th, 2013
Lovely! We all need to keep the faith! It works! - Reply to this post - View
Lovely! We all need to keep the faith! It works! - Reply to this post - View
Kat replied to discussion "Stage IV with Bone Mets" in group Breast Cancer at 12:09 pm, March 29th, 2013
Maryy40 I am on Aromasin and Afinitor. IMy doctor tried me on the Afinitor 10 mg at first. I could not tolerate the head pain. She dropped me to 5 mg. I had itching and just took benedryl for a short time that I now have no itching anymore. - Reply to this post - View
Maryy40 I am on Aromasin and Afinitor. IMy doctor tried me on the Afinitor 10 mg at first. I could not tolerate the head pain. She dropped me to 5 mg. I had itching and just took benedryl for a short time that I now have no itching anymore. - Reply to this post - View
Jan Baird Hasak replied to discussion "Stage IV with Bone Mets" in group Breast Cancer at 10:40 am, March 29th, 2013
Having been diagnosed last November with Stage IV breast cancer with mets to the bones and pleural cavity, I am so glad to have found this discussion board. I have side effects from my T-DM1 treatment at Stanford and get scans every three months. I'm constantly wondering if the pains and discomfort I feel are from the drugs I am getting or from cancer returning. I am praying for all who have to undergo continuing scans and are awaiting the results. It is so hard and scary. Thanks for being there as support. - Reply to this post - View
Having been diagnosed last November with Stage IV breast cancer with mets to the bones and pleural cavity, I am so glad to have found this discussion board. I have side effects from my T-DM1 treatment at Stanford and get scans every three months. I'm constantly wondering if the pains and discomfort I feel are from the drugs I am getting or from cancer returning. I am praying for all who have to undergo continuing scans and are awaiting the results. It is so hard and scary. Thanks for being there as support. - Reply to this post - View
suebird2 replied to discussion "Stage IV with Bone Mets" in group Breast Cancer at 10:35 am, March 29th, 2013
My onc says to use any product with a high urea content for hand/foot syndrome. You can get Rx urea, in fact. I use Eucerin Professional Repair ( second ingred. is urea,)and it helps. It's funny, but early on in my Xeloda tx, my feet were burning and really red, but now after two years, they're mostly just dry, so hang in there! Susan - Reply to this post - View
My onc says to use any product with a high urea content for hand/foot syndrome. You can get Rx urea, in fact. I use Eucerin Professional Repair ( second ingred. is urea,)and it helps. It's funny, but early on in my Xeloda tx, my feet were burning and really red, but now after two years, they're mostly just dry, so hang in there! Susan - Reply to this post - View
suebird2 replied to discussion "Stage IV with Bone Mets" in group Breast Cancer at 10:27 am, March 29th, 2013
I have not lost my hair from Xeloda, but it has turned curly, and I look ten years younger! almost makes up for the fatigue. Susan - Reply to this post - View
I have not lost my hair from Xeloda, but it has turned curly, and I look ten years younger! almost makes up for the fatigue. Susan - Reply to this post - View
suebird2 replied to discussion "Stage IV with Bone Mets" in group Breast Cancer at 10:25 am, March 29th, 2013
Dear Patty, It is absolute all right to get a second opinion, especially at a Comprehensive Cancer Center like MSK. It you are not respondindg to Faslodex, there are lots of meds to try instead. After two years on hormonals and AIs, I had very rapid progression so went to chemo. I was scared silly, of course, but after two years on Xeloda, I seem to be stable and the onl side effect is fatigue. So. it's a big crap shoot, with lots of lucky outcomes. Susan - Reply to this post - View
Dear Patty, It is absolute all right to get a second opinion, especially at a Comprehensive Cancer Center like MSK. It you are not respondindg to Faslodex, there are lots of meds to try instead. After two years on hormonals and AIs, I had very rapid progression so went to chemo. I was scared silly, of course, but after two years on Xeloda, I seem to be stable and the onl side effect is fatigue. So. it's a big crap shoot, with lots of lucky outcomes. Susan - Reply to this post - View
IS replied to discussion "Complementary/Integrative Medicine- what has your doctor suggested?" in groupComplementary Medicine at 9:38 am, March 29th, 2013
How was your Reiki experience? - Reply to this post - View
How was your Reiki experience? - Reply to this post - View
iluvlucy823 replied to update "We search if there are any clinical trial from research Organizations, drug [...]" at 9:00 am, March 29th, 2013
What kind of cancer does your wife have? Have looked into MD Anderson Cancer Center in Houston Texas? You can also go on the national cancer institute website and look for clinical trials.... I'm assuming your wife has breast cancer... If so does she have the BRCA 1 or 2 genetic mutation? - Reply to this post - View
What kind of cancer does your wife have? Have looked into MD Anderson Cancer Center in Houston Texas? You can also go on the national cancer institute website and look for clinical trials.... I'm assuming your wife has breast cancer... If so does she have the BRCA 1 or 2 genetic mutation? - Reply to this post - View
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