Daily digest for April 19th, 2013 [CancerCon
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mgs replied to discussion "Stage IV Uterine Cancer Experience" in group Uterine Cancer at 1:04 am, April 19th, 2013
Hello Shyann - Thank you. Please let us know the results of your CT and CA125 as soon as you get them. I hope they'll be good news, too. I'll be praying for that for you. Marty - Reply to this post - View
Hello Shyann - Thank you. Please let us know the results of your CT and CA125 as soon as you get them. I hope they'll be good news, too. I'll be praying for that for you. Marty - Reply to this post - View
Norma replied to discussion "Good afternoon...I just signed up and I am thrilled there is a [...]" in groupWaldenström's Macroglobulinemia at 12:12 am, April 19th, 2013
Hi Mark This may not suit you, but I deliberately never claim WM by calling it "my" WM....rather I call it "the" WM. Anything to encourage belief in wellness and control Great news on your trial acceptance! - Reply to this post - View
Hi Mark This may not suit you, but I deliberately never claim WM by calling it "my" WM....rather I call it "the" WM. Anything to encourage belief in wellness and control Great news on your trial acceptance! - Reply to this post - View
Marion A. replied to discussion "I have stage IIIC ovarian cancer. I had a complete abdominal hysterectomy [...]" in group Ovarian Cancer at 6:46 pm, April 18th, 2013
Hello Dr. Have you seen many cases of 3c with ca only in one ovary, still encapsulated, no mets at all in the abdomen, but many positive aortic lymph nodes. 100% debulked. I have been told by 2 gyn onc that survival rates in that group may be better, but I can find no one with a similar diagnosis. I would like as much info as possible. I understand medical terminology and literature. Thank you. - Reply to this post - View
Hello Dr. Have you seen many cases of 3c with ca only in one ovary, still encapsulated, no mets at all in the abdomen, but many positive aortic lymph nodes. 100% debulked. I have been told by 2 gyn onc that survival rates in that group may be better, but I can find no one with a similar diagnosis. I would like as much info as possible. I understand medical terminology and literature. Thank you. - Reply to this post - View
Marion A. replied to discussion "Ask the Expert: Question about treatment options for stage IV ovarian cancer with bone mets" in group Ovarian Cancer at 6:33 pm, April 18th, 2013
Theresa, Great that you are such a "youngster". That bodes well for recovery. Sounds like you are still in a first round Chemo. Can you stay out of work till its completed. I really believe in the importance of sleep and good diet. Even if you must go to work, I hope you take advantage of any temp disability or other breaks. How much more time on chemo? Wishing you the healing you deserve. This ca I'm sure is linked to high anxiety. Let's kick it ! - Reply to this post - View
Theresa, Great that you are such a "youngster". That bodes well for recovery. Sounds like you are still in a first round Chemo. Can you stay out of work till its completed. I really believe in the importance of sleep and good diet. Even if you must go to work, I hope you take advantage of any temp disability or other breaks. How much more time on chemo? Wishing you the healing you deserve. This ca I'm sure is linked to high anxiety. Let's kick it ! - Reply to this post - View
Marion A. replied to discussion "I am on pins and needles( literally from neuropathy, post weekly chemo. [...]" in group Ovarian Cancer at 6:15 pm, April 18th, 2013
Thank you juliroos. That is the first article I've seen regarding neuropathy caused by chemo. It was very helpful, especially the part about the possible prognosis...gets worse before better as nerves heal. I will get back to the B vitamins and try some of the other things. Don't know your situation, but hope it turns out for the best! - Reply to this post - View
Thank you juliroos. That is the first article I've seen regarding neuropathy caused by chemo. It was very helpful, especially the part about the possible prognosis...gets worse before better as nerves heal. I will get back to the B vitamins and try some of the other things. Don't know your situation, but hope it turns out for the best! - Reply to this post - View
Theresa B replied to discussion "Ask the Expert: Question about treatment options for stage IV ovarian cancer with bone mets" in group Ovarian Cancer at 2:10 pm, April 18th, 2013
Thankyou so much Marion, I appreciate YOU!! and YOU GO GIRL!! I hope I'm doing as well and hopeful to make it to 64 years of age.....I just turned 54 in March. Just returning to work in June I worry about.....my work is standing on my feet entire shift and up and down ladders....Joint pain had dissapeared shortly before my surprise diagnoses in late Oct. and had some of joint pain off and on, but have not been doing anything vigorously for last 2 months.....walking is a bit tiring but I push myself and I live upstairs...aauuugh! But I will start working with weights as well and really appreciate advice from you and others that have been in the same boat.....think I should get that [...] - Reply to this post - View
Thankyou so much Marion, I appreciate YOU!! and YOU GO GIRL!! I hope I'm doing as well and hopeful to make it to 64 years of age.....I just turned 54 in March. Just returning to work in June I worry about.....my work is standing on my feet entire shift and up and down ladders....Joint pain had dissapeared shortly before my surprise diagnoses in late Oct. and had some of joint pain off and on, but have not been doing anything vigorously for last 2 months.....walking is a bit tiring but I push myself and I live upstairs...aauuugh! But I will start working with weights as well and really appreciate advice from you and others that have been in the same boat.....think I should get that [...] - Reply to this post - View
juliroos replied to discussion "I am on pins and needles( literally from neuropathy, post weekly chemo. [...]" in group Ovarian Cancer at 1:53 pm, April 18th, 2013
here's a great article with some tips that you might helpful. - Reply to this post - View
here's a great article with some tips that you might helpful. - Reply to this post - View
Marion A. replied to discussion "I have stage IIIC ovarian cancer. I had a complete abdominal hysterectomy [...]" in group Ovarian Cancer at 12:59 pm, April 18th, 2013
Hi Gerry, Wow, you are some tough lady. Are they giving you the same drugs the 3rd time? Do they base the 3rd chemo on ca125 only? Do scans show mets? I just read an article about the #1 factor in recovery is the amount of debulking done at surgery and the experience level of the gyn onc surgeon. I am somewhat encouraged because of my ace surgeon who debulked me 100%. Your story is sobering! Good luck. Keep in touch if you wish. I'd like that. - Reply to this post - View
Hi Gerry, Wow, you are some tough lady. Are they giving you the same drugs the 3rd time? Do they base the 3rd chemo on ca125 only? Do scans show mets? I just read an article about the #1 factor in recovery is the amount of debulking done at surgery and the experience level of the gyn onc surgeon. I am somewhat encouraged because of my ace surgeon who debulked me 100%. Your story is sobering! Good luck. Keep in touch if you wish. I'd like that. - Reply to this post - View
megm replied to discussion "I am on pins and needles( literally from neuropathy, post weekly chemo. [...]" in group Ovarian Cancer at 12:59 pm, April 18th, 2013
Hey Marion- Thanks for your post. I'll message the other members of the community to see if they can share their experience. - Reply to this post - View
Hey Marion- Thanks for your post. I'll message the other members of the community to see if they can share their experience. - Reply to this post - View
Marion A. replied to discussion "Ask the Expert: Question about treatment options for stage IV ovarian cancer with bone mets" in group Ovarian Cancer at 12:48 pm, April 18th, 2013
Also, my mom had osteoporosis and I worried about joint pain.i kept walking 1 1/2 miles a day all through chemo and still do. Plus I do a series of floor exercises with 3 and 5 lb weights. Just had a bone density scan no osteoporosis! Whew! Just push yourself to do as much walking as you can....and that is tough with the fatigue, especially stairs and hills. You can do it, though! - Reply to this post - View
Also, my mom had osteoporosis and I worried about joint pain.i kept walking 1 1/2 miles a day all through chemo and still do. Plus I do a series of floor exercises with 3 and 5 lb weights. Just had a bone density scan no osteoporosis! Whew! Just push yourself to do as much walking as you can....and that is tough with the fatigue, especially stairs and hills. You can do it, though! - Reply to this post - View
debnh replied to discussion "Stage IV Uterine Cancer Experience" in group Uterine Cancer at 11:47 am, April 18th, 2013
Oh yes, that chemo brain is awful! - Reply to this post - View
Oh yes, that chemo brain is awful! - Reply to this post - View
debnh replied to discussion "Stage IV Uterine Cancer Experience" in group Uterine Cancer at 11:46 am, April 18th, 2013
Yes, I do think of Joann and pray she is doing better. If anyone hears anything, please let us all know. - Reply to this post - View
Yes, I do think of Joann and pray she is doing better. If anyone hears anything, please let us all know. - Reply to this post - View
Marion A. replied to discussion "Ask the Expert: Question about treatment options for stage IV ovarian cancer with bone mets" in group Ovarian Cancer at 11:44 am, April 18th, 2013
Hi Theresa, I had weekly taxol and every 3rd week, carboplatin. Total taxol was 25% higher by the end. I too had joint pain, especially in the knees. In July it will be 2 years since I started chemo and finally the joints are better. I still have neuropathy in my feet. But I'm alive and have had cleas PET scans! Try not to worry about aches and pains during pain. Fatigue and some nausea is inevitable. I was also 3c and 64 years old. Where did your cancer travel. Mine was up my lymph nodes. Good luck.stay positive. - Reply to this post - View
Hi Theresa, I had weekly taxol and every 3rd week, carboplatin. Total taxol was 25% higher by the end. I too had joint pain, especially in the knees. In July it will be 2 years since I started chemo and finally the joints are better. I still have neuropathy in my feet. But I'm alive and have had cleas PET scans! Try not to worry about aches and pains during pain. Fatigue and some nausea is inevitable. I was also 3c and 64 years old. Where did your cancer travel. Mine was up my lymph nodes. Good luck.stay positive. - Reply to this post - View
Marion A. started discussion "I am on pins and needles( literally from neuropathy, post weekly chemo. [...]" in group Ovarian Cancer at 11:33 am, April 18th, 2013
I am on pins and needles( literally from neuropathy, post weekly chemo. I'm 15 months out and doing well. Taxol each week and Carboplatin every third week for stage 3c ovarian ca. Anyone out there who had this protocol? How are you doing? Did you get persistent neuropathy? - Reply to this post - View
I am on pins and needles( literally from neuropathy, post weekly chemo. I'm 15 months out and doing well. Taxol each week and Carboplatin every third week for stage 3c ovarian ca. Anyone out there who had this protocol? How are you doing? Did you get persistent neuropathy? - Reply to this post - View
gerry replied to discussion "I have stage IIIC ovarian cancer. I had a complete abdominal hysterectomy [...]" in group Ovarian Cancer at 11:27 am, April 18th, 2013
Hi, I have OV Cancer III (c) going on five years, age 71 had two rounds of chemo for six months each two years apart and now the need for chemo for third six month regimen is fast approaching per blood work findings of CA-125. Just because you pass the 5 year mark and "one day" or there about doesn't mean you are cured. There is no cure for Stage III and IV for this disease. We just have to do the best we can mentally and physically to gain as much time as we can between recurrences. That is the nature of this disease. I have complete hysterectomy, removal of omendum, ovaries, fallopian tubes, uterus, & cervix. Was left w/many surgical hernias which were [...] - Reply to this post - View
Hi, I have OV Cancer III (c) going on five years, age 71 had two rounds of chemo for six months each two years apart and now the need for chemo for third six month regimen is fast approaching per blood work findings of CA-125. Just because you pass the 5 year mark and "one day" or there about doesn't mean you are cured. There is no cure for Stage III and IV for this disease. We just have to do the best we can mentally and physically to gain as much time as we can between recurrences. That is the nature of this disease. I have complete hysterectomy, removal of omendum, ovaries, fallopian tubes, uterus, & cervix. Was left w/many surgical hernias which were [...] - Reply to this post - View
helen replied to discussion "Angio Sarcoma of the Breast" in group Sarcoma at 11:24 am, April 18th, 2013
Hi Angio I understand your views completely, I have had treatments for other problems which did not work, but have given me autoimmune diseases. Best wishes Torchy Kathleen - Reply to this post - View
Hi Angio I understand your views completely, I have had treatments for other problems which did not work, but have given me autoimmune diseases. Best wishes Torchy Kathleen - Reply to this post - View
gerry replied to discussion "Ovarian carcinosarcoma" in group Sarcoma at 11:18 am, April 18th, 2013
Could that second change be actually the use of a DiVinci operational tool doctor uses that only uses two small incisions to look inside and see what the trouble may be. It is my understanding that you have to have a belly button in the correct place for them to proceed. My button has been moved due to several surgeries. I have same as you and will be starting Chemo for third time in five years as it is a recurrent disease that is not curable. Best Wishes to you. Gerry - Reply to this post - View
Could that second change be actually the use of a DiVinci operational tool doctor uses that only uses two small incisions to look inside and see what the trouble may be. It is my understanding that you have to have a belly button in the correct place for them to proceed. My button has been moved due to several surgeries. I have same as you and will be starting Chemo for third time in five years as it is a recurrent disease that is not curable. Best Wishes to you. Gerry - Reply to this post - View
BC Advocate G Lopez replied to discussion "I'm a recent survivor of Testicular Cancer and I wrote an upbeat [...]" in group Testicular Cancer at 10:45 am, April 18th, 2013
Dear Fred, I just saw your post and loved your youtube videos because they are inspiring and go straight to the point. You reminded me of many things in the journey that I had forgotten. I am a fellow survivor. After my diagnosis, I also became Breast Cancer advocate supporting several local and national advocacy groups and I would love to connect with you via Facebook if you would consider accepting my request. I really like your philosophy and your sense of humor. Thanks for brighten my day with your videos. This is a world of opportunities and we can get those even from the darkest days. - Reply to this post - View
Dear Fred, I just saw your post and loved your youtube videos because they are inspiring and go straight to the point. You reminded me of many things in the journey that I had forgotten. I am a fellow survivor. After my diagnosis, I also became Breast Cancer advocate supporting several local and national advocacy groups and I would love to connect with you via Facebook if you would consider accepting my request. I really like your philosophy and your sense of humor. Thanks for brighten my day with your videos. This is a world of opportunities and we can get those even from the darkest days. - Reply to this post - View
dianeo replied to discussion "Stage IV Uterine Cancer Experience" in group Uterine Cancer at 10:32 am, April 18th, 2013
hey joann, i have not seen an update on how you are doing. please let us know! God, be with my friend joann and supply whatever she needs! amen. looking forward to hearing from you! diane - Reply to this post - View
hey joann, i have not seen an update on how you are doing. please let us know! God, be with my friend joann and supply whatever she needs! amen. looking forward to hearing from you! diane - Reply to this post - View
Karen in PA replied to discussion "Good afternoon...I just signed up and I am thrilled there is a [...]" in group Waldenström's Macroglobulinemia at 10:23 am, April 18th, 2013
Hi Susy...you may want to check into Angel Flight at 1-800-549-9980. When I was flying to Boston, they really were a blessing. The trip is free. The only thing is, these are volunteered pilots (who are truley flying Angels!) in 4-6 seater planes so depending on weather, your flight may be canceled at last notice. (this happened twice to me out of 3 scheduled flights). I am now going to Sloan for the Ibrutinib trial so perhaps, if there is room, you may find it cheaper and a shorter distant to see if Dr. Palomba has space, too. The switch to Sloan from Dana was so much less stressful on the travel. Sloan is 2 1/2 hours from my house so I make it my [...] - Reply to this post -& nbsp;View
Hi Susy...you may want to check into Angel Flight at 1-800-549-9980. When I was flying to Boston, they really were a blessing. The trip is free. The only thing is, these are volunteered pilots (who are truley flying Angels!) in 4-6 seater planes so depending on weather, your flight may be canceled at last notice. (this happened twice to me out of 3 scheduled flights). I am now going to Sloan for the Ibrutinib trial so perhaps, if there is room, you may find it cheaper and a shorter distant to see if Dr. Palomba has space, too. The switch to Sloan from Dana was so much less stressful on the travel. Sloan is 2 1/2 hours from my house so I make it my [...] - Reply to this post -& nbsp;View
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