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10 Chemos

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HealthyNow

118 POSTS
JOINED JUN 2017
July 3, 2017 at 10:24 am

Hello Niki!  I had surgery and 3 drainings and 10 chemos – it appears the lipodox and your chemo, cisplatin, stopped working after about 2 chemos – the oncologist likes to wait to see what your CA125 does – before they formulate their next plan of attack – mine is doubling – so as of June 23 it was 59.7 – it was 13 in January at the end of paxol taxol.  I knew they did not get all of my cancer after surgery – there are tiny tiny microscopic spots on the liver and other areas in the abdomen – they have to have some object larger than 1cm to cut away – we have one of the least desirable cancers – it is aggressive and smart – well mine is at least – malignant serous surface papillary carcinoma – unspecified ovarian cancer (surgeon thinks from the fallopian tubes)…the cancer cells figure out how to push away the chemo – so they can live and multiply – pitiful little buggers – anyway I am scared too – I am off chemo for July and we will see what happens in August – but I go back to school and have to be fiddle fit for my students – now I worry that all tired is major cancer recurrence (not continuing chemo side affects;  all indigestion is tumor recurrence not just plain ol’ surgery healing ache).  Keep writing!  Healthy Now.

Profile picture

nikki

130 POSTS
JOINED JUL 2016
July 3, 2017 at 9:06 pm

I’m a teacher too!  I’m halfway through chemo now and I’m having mixed feelings about this one.  I’ve had hideous mouth ulcers, bowel problems, a cough that won’t go away and now a busted ear drum.  But I haven’t been vomiting and sick all the time like other treatments.  We’ll see how it all goes.  Not long now.

Nikki

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
July 3, 2017 at 9:29 pm

Nikki – when you say you are having bowel problems what does that mean?  I had 7 bowel movements today – all in good form however THIS SEEMS EXCESSIVE to say the least.  I went through a period on my second chemo with paxol/taxol and did not have a bowel movement from Friday to Tuesday  – I had to leave school and go immediately, bent over, barely able to walk, to an ER – so embarrasing – they gave me a pain shot – I had to remove my shirt in front of a bunch of people (no privacy), an xray, an enema on this table with a giant diaper, suppositories for home use, lactulose – at 11pm that night I was pooing in my shower – big hunks of DAYS old food – it was so disgusting; then I had to disenfect the shower and get up at 5am to go back to school.  So glad this is history.  Now I take Sennapur the morning and night of chemo and the next day…and I swig down some lactulose if things are not going as hoped.  Have you ever FASTED 3 days before and during and one day after chemo?  Just read about this but it seems dangerous.  (Supposed to divert healthy cells from chemo murder.)  Healthy Now.

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
July 3, 2017 at 9:31 pm

I love your profile pic Nikki – hang in there and here is a BIG we can do this hug from Taiwan.  I am so sorry to hear about your busted ear drum – what happened?  Healthy Now.

Profile picture

nikki

130 POSTS
JOINED JUL 2016
July 5, 2017 at 8:40 am

My bowel problems are nothing compared to what you’ve had to cope with!  I’ve had over the years an iliostomy and colostomy both reversed leaving my bowel a bit touchy.  My first 2 cycles this time landed me in hospital with incredibly painful constipation and it looks like I have a bit of a blockage.  I have to manage it with laxatives and it’s hard trying to find the right balance.  As for my ear, my nose gets very blocked from the chemo and the cisplatin causes tinnitus. One night I had a lot of pain in my ear so I went to get some endone for the pain.  Before I could get it the pain got worse and it felt like I was being stabbed in the ear and I ended up on the floor screaming.  My ear gave a tiny pop and the pain and pressure eased and now chemo is on hold until they can work out how my damage was done.  So far my ear drum has stopped vibrating but it’s not perforated!  Everyone sounds like high pitched metal munchkins. It’s really annoying.

Profile picture

Rossie15

14 POSTS
JOINED DEC 2017
December 9, 2017 at 1:48 pm

Hi Nikki, I was blessed not to have a lot of problems with Cisplatin, and whilst I didn’t have most of the problems you are talking about, I did suffer from dreadful painful, constipation, chemist tablets only do so much and then you have to get the balance right,and then I remembered my mothers old remedy, PRUNES,  bought I packet and ate half of staggered in one day, and it worked without pain, so they became my best friend during the remainder of chemo. Sex was one of my biggest problems during chemo, it just completely dried me up, Ros

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 9, 2017 at 3:51 pm

Merry Christmas 2017 to my Ovarian Cancer Sisters – 

I wish every minute filled with wonder and joy.  Lots of Christmas movies and Christmas cocoa (cocoa, chocolate kisses, mallows, candy cane for stirring), and a game called POOP THE CANDY CANE!  ha ha.  My December has been filled with highs and lows and an abundance of Christmas spirit.

My October scan said two tiny new weeds have appeared since June scan.  My CA went to 44 and is back to over 105.  There will be new weed killer on the horizon.  Contacted 3 providers for financial help (BRCA1/2 test, AVASTAIN, and Olaparib).  Go to hospital tomorrow for chemo and a ‘computational blood test’ on Monday.    Healthy Now.

Profile picture

nikki

130 POSTS
JOINED JUL 2016
December 9, 2017 at 5:08 pm

Like you Healthy Now, I’ve had a bad scan report but my doctor has finally found me a trial!!!  It’s called the MOST trial and they’re testing my tumor samples to find different genetic markers and my entire genome is going to be tested and mapped.  It’s incredible how fast medical research can move sometimes. There is always something new to try.

Nikki

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 9, 2017 at 5:33 pm

Nikki!  Hi!  MOST trial — I want to hear all about it.  Can’t get your image out of my head – shaving your head for all school assembly!  How are you spending your day today?  I slept in, talked to a friend overseas, ate purple rice and beans for breakfast with coffee (ha ha), did chores, went to my fav cafeteria for meatballs and green beans carry out – came back to TINY CHRISTMAS and CHRISTMAS SOLO movies with 

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 9, 2017 at 5:34 pm

Nikki!  Hi!  MOST trial — I want to hear all about it.  Can’t get your image out of my head – shaving your head for all school assembly!  How are you spending your day today?  I slept in, talked to a friend overseas, ate purple rice and beans for breakfast with coffee (ha ha), did chores, went to my fav cafeteria for meatballs and green beans carry out – came back to TINY CHRISTMAS and CHRISTMAS SOLO movies with Image may contain: one or more people, people standing, tree, snow and outdoor
<h3 class=”r” style=”font-size: 18px; font-weight: normal; margin: 0px; padding: 0px; overflow: hidden; text-overflow: ellipsis; white-space: nowrap; color: #222222; font-family: arial, sans-serif; background-color: #ffffff;”></h3>

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Helen

242 POSTS
JOINED AUG 2016
December 15, 2017 at 10:13 pm

Hi Sandra, thanks for your Christmas good wishes.  I wish you a Merry Christmas and a happy and healthy new year.  I have finished chemo for the year, my marker is almost back in the normal range and I am back to doing all my normal routines.  I have an appointment in mid January to see how my marker levels are and then decisions will be made regarding my next step in treatments.  I hope you managed this latest lot of chemo that you had.  Are you still going on your January holiday?  Take care Helen

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 15, 2017 at 11:11 pm

Helen – Merry Merry Christmas.  Are you saying your numbers went from 1700 to 35?  That is totally crazy to me.  My wonderful doc outlined our treatment plan.  I kind of went crazy after learning some negative numbers and became fixated on taking olaparib (the second opinon doc last summer recommended it).  Mind you I do not have the results of the BRCA test back yet (they took the blood last Monday – one thousand usd i pay – filing for financial aid if I can get an address)…anyway Olaparib is not really that great and was not listed on my doc’s plan of action so I kind of feel weird now.  He changed me again – off paxel/carbo/175 to topotecan/paxel.  Every week for 3 weeks then off a week.  He tried to show me my CA numbers last Sat but I did not want to look.  Filing financial aid app for Avastin.  Are you BRCA positive?  No I will not travel in January – we have Chinese New Year in Feb – my principal just dumped a bomb on us today – he wants formal lesson plans for the whole semester and all of next semester’s lesson plans before winter break.  LOL.  Sandra

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Rossie15

14 POSTS
JOINED DEC 2017
December 19, 2017 at 3:48 pm

Nikki – I want to hear all about the MOST trial! I am not eligible for this as you have to have had cancer reoccur at least twice.  Well it is the first day after my first treatment on Caelyx/Carbo, so far so good, due to this cancer  now re-occurring for the first time and it is aggressive, I am a stage 3c, my markers are 25, but the oncologist says that is because not all the cancer cells are giving of markers, but the good news is, it is not the organs, lymph nodes or bones, and they believe 6 treatments once a month should arrest it. I have also been very blessed to be put on the INOVATe Program at the Kolling Institute at North Shore Hospital which is in coordination with the Garvan Institute, this program is where they take a section of your tumor and study and dissect to find out the right treatment you should have, looking at all treatments available even for other cancers, so far for some it has yielded miraculous results for some, they moving from the one size fits all approach, and treating every person as an individual. Merry Christmas to everyone,

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 19, 2017 at 9:59 pm

Hey Nikki, Helen and Rosie – A rainy night here in Taiwan – I feel great – I did not ask about my numbers and was happy as a clam Sunday when I left the hospital from Saturday chemo.  Enjoyed a fabulous holiday meal with about 16 friends at a German restaurant decked out for Christmas.  The doc’s report said SEVERAL tiny nodules but I swear mine says TWO (it’s at school).  I found a wee heater for my office – froze to death yesterday – public schools do not have heat here.  I am enjoying this Christmas Season a lot and am going back to a movie right now!  Catch me up.  Helen it is SO EXCITING you don’t have to have chemo for awhile.  THIS IS HUGE.  Yay!  PARTY.  Sandra  PS My doc is trying metformin to control the cancer – typically a diabetes drug.  Still having accupuncture – 9, 12, and last night 14 needles.  And seeing the herb doc (traditional Chinese Medicine) – I take a liquid with powder in the AM, powder in water lunch and dinner.  You would not belive THE LONG list of plant based herbs in these powders and liquid.

Profile picture

Helen

242 POSTS
JOINED AUG 2016
December 21, 2017 at 1:49 pm

Hi Sandra,

You asked me if I am BRCA positive.  Yes I am, I am BRCA2, , so are my brother and sister, we think the gene was passed to us by our mother who had breast cancer at age 52 in 1971.  My sister has had preventive surgery to reduce her risk, my daughter also has the faulty gene and she has had some preventive surgery and will have more when her children are a bit older.  I have also been on olaparib for 18 months and it meant my levels were in the normal range for quite a while.  I hope it works for you.  Enjoy your holidays and take care.  Helen

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Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
July 3, 2017 at 10:24 am

Hello Niki!  I had surgery and 3 drainings and 10 chemos – it appears the lipodox and your chemo, cisplatin, stopped working after about 2 chemos – the oncologist likes to wait to see what your CA125 does – before they formulate their next plan of attack – mine is doubling – so as of June 23 it was 59.7 – it was 13 in January at the end of paxol taxol.  I knew they did not get all of my cancer after surgery – there are tiny tiny microscopic spots on the liver and other areas in the abdomen – they have to have some object larger than 1cm to cut away – we have one of the least desirable cancers – it is aggressive and smart – well mine is at least – malignant serous surface papillary carcinoma – unspecified ovarian cancer (surgeon thinks from the fallopian tubes)…the cancer cells figure out how to push away the chemo – so they can live and multiply – pitiful little buggers – anyway I am scared too – I am off chemo for July and we will see what happens in August – but I go back to school and have to be fiddle fit for my students – now I worry that all tired is major cancer recurrence (not continuing chemo side affects;  all indigestion is tumor recurrence not just plain ol’ surgery healing ache).  Keep writing!  Healthy Now.

Profile picture

nikki

130 POSTS
JOINED JUL 2016
July 3, 2017 at 9:06 pm

I’m a teacher too!  I’m halfway through chemo now and I’m having mixed feelings about this one.  I’ve had hideous mouth ulcers, bowel problems, a cough that won’t go away and now a busted ear drum.  But I haven’t been vomiting and sick all the time like other treatments.  We’ll see how it all goes.  Not long now.

Nikki

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
July 3, 2017 at 9:29 pm

Nikki – when you say you are having bowel problems what does that mean?  I had 7 bowel movements today – all in good form however THIS SEEMS EXCESSIVE to say the least.  I went through a period on my second chemo with paxol/taxol and did not have a bowel movement from Friday to Tuesday  – I had to leave school and go immediately, bent over, barely able to walk, to an ER – so embarrasing – they gave me a pain shot – I had to remove my shirt in front of a bunch of people (no privacy), an xray, an enema on this table with a giant diaper, suppositories for home use, lactulose – at 11pm that night I was pooing in my shower – big hunks of DAYS old food – it was so disgusting; then I had to disenfect the shower and get up at 5am to go back to school.  So glad this is history.  Now I take Sennapur the morning and night of chemo and the next day…and I swig down some lactulose if things are not going as hoped.  Have you ever FASTED 3 days before and during and one day after chemo?  Just read about this but it seems dangerous.  (Supposed to divert healthy cells from chemo murder.)  Healthy Now.

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
July 3, 2017 at 9:31 pm

I love your profile pic Nikki – hang in there and here is a BIG we can do this hug from Taiwan.  I am so sorry to hear about your busted ear drum – what happened?  Healthy Now.

Profile picture

nikki

130 POSTS
JOINED JUL 2016
July 5, 2017 at 8:40 am

My bowel problems are nothing compared to what you’ve had to cope with!  I’ve had over the years an iliostomy and colostomy both reversed leaving my bowel a bit touchy.  My first 2 cycles this time landed me in hospital with incredibly painful constipation and it looks like I have a bit of a blockage.  I have to manage it with laxatives and it’s hard trying to find the right balance.  As for my ear, my nose gets very blocked from the chemo and the cisplatin causes tinnitus. One night I had a lot of pain in my ear so I went to get some endone for the pain.  Before I could get it the pain got worse and it felt like I was being stabbed in the ear and I ended up on the floor screaming.  My ear gave a tiny pop and the pain and pressure eased and now chemo is on hold until they can work out how my damage was done.  So far my ear drum has stopped vibrating but it’s not perforated!  Everyone sounds like high pitched metal munchkins. It’s really annoying.

Profile picture

Rossie15

14 POSTS
JOINED DEC 2017
December 9, 2017 at 1:48 pm

Hi Nikki, I was blessed not to have a lot of problems with Cisplatin, and whilst I didn’t have most of the problems you are talking about, I did suffer from dreadful painful, constipation, chemist tablets only do so much and then you have to get the balance right,and then I remembered my mothers old remedy, PRUNES,  bought I packet and ate half of staggered in one day, and it worked without pain, so they became my best friend during the remainder of chemo. Sex was one of my biggest problems during chemo, it just completely dried me up, Ros

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 9, 2017 at 3:51 pm

Merry Christmas 2017 to my Ovarian Cancer Sisters – 

I wish every minute filled with wonder and joy.  Lots of Christmas movies and Christmas cocoa (cocoa, chocolate kisses, mallows, candy cane for stirring), and a game called POOP THE CANDY CANE!  ha ha.  My December has been filled with highs and lows and an abundance of Christmas spirit.

My October scan said two tiny new weeds have appeared since June scan.  My CA went to 44 and is back to over 105.  There will be new weed killer on the horizon.  Contacted 3 providers for financial help (BRCA1/2 test, AVASTAIN, and Olaparib).  Go to hospital tomorrow for chemo and a ‘computational blood test’ on Monday.    Healthy Now.

Profile picture

nikki

130 POSTS
JOINED JUL 2016
December 9, 2017 at 5:08 pm

Like you Healthy Now, I’ve had a bad scan report but my doctor has finally found me a trial!!!  It’s called the MOST trial and they’re testing my tumor samples to find different genetic markers and my entire genome is going to be tested and mapped.  It’s incredible how fast medical research can move sometimes. There is always something new to try.

Nikki

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 9, 2017 at 5:33 pm

Nikki!  Hi!  MOST trial — I want to hear all about it.  Can’t get your image out of my head – shaving your head for all school assembly!  How are you spending your day today?  I slept in, talked to a friend overseas, ate purple rice and beans for breakfast with coffee (ha ha), did chores, went to my fav cafeteria for meatballs and green beans carry out – came back to TINY CHRISTMAS and CHRISTMAS SOLO movies with 

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 9, 2017 at 5:34 pm

Nikki!  Hi!  MOST trial — I want to hear all about it.  Can’t get your image out of my head – shaving your head for all school assembly!  How are you spending your day today?  I slept in, talked to a friend overseas, ate purple rice and beans for breakfast with coffee (ha ha), did chores, went to my fav cafeteria for meatballs and green beans carry out – came back to TINY CHRISTMAS and CHRISTMAS SOLO movies with Image may contain: one or more people, people standing, tree, snow and outdoor
<h3 class=”r” style=”font-size: 18px; font-weight: normal; margin: 0px; padding: 0px; overflow: hidden; text-overflow: ellipsis; white-space: nowrap; color: #222222; font-family: arial, sans-serif; background-color: #ffffff;”></h3>

Profile picture

Helen

242 POSTS
JOINED AUG 2016
December 15, 2017 at 10:13 pm

Hi Sandra, thanks for your Christmas good wishes.  I wish you a Merry Christmas and a happy and healthy new year.  I have finished chemo for the year, my marker is almost back in the normal range and I am back to doing all my normal routines.  I have an appointment in mid January to see how my marker levels are and then decisions will be made regarding my next step in treatments.  I hope you managed this latest lot of chemo that you had.  Are you still going on your January holiday?  Take care Helen

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 15, 2017 at 11:11 pm

Helen – Merry Merry Christmas.  Are you saying your numbers went from 1700 to 35?  That is totally crazy to me.  My wonderful doc outlined our treatment plan.  I kind of went crazy after learning some negative numbers and became fixated on taking olaparib (the second opinon doc last summer recommended it).  Mind you I do not have the results of the BRCA test back yet (they took the blood last Monday – one thousand usd i pay – filing for financial aid if I can get an address)…anyway Olaparib is not really that great and was not listed on my doc’s plan of action so I kind of feel weird now.  He changed me again – off paxel/carbo/175 to topotecan/paxel.  Every week for 3 weeks then off a week.  He tried to show me my CA numbers last Sat but I did not want to look.  Filing financial aid app for Avastin.  Are you BRCA positive?  No I will not travel in January – we have Chinese New Year in Feb – my principal just dumped a bomb on us today – he wants formal lesson plans for the whole semester and all of next semester’s lesson plans before winter break.  LOL.  Sandra

Profile picture

Rossie15

14 POSTS
JOINED DEC 2017
December 19, 2017 at 3:48 pm

Nikki – I want to hear all about the MOST trial! I am not eligible for this as you have to have had cancer reoccur at least twice.  Well it is the first day after my first treatment on Caelyx/Carbo, so far so good, due to this cancer  now re-occurring for the first time and it is aggressive, I am a stage 3c, my markers are 25, but the oncologist says that is because not all the cancer cells are giving of markers, but the good news is, it is not the organs, lymph nodes or bones, and they believe 6 treatments once a month should arrest it. I have also been very blessed to be put on the INOVATe Program at the Kolling Institute at North Shore Hospital which is in coordination with the Garvan Institute, this program is where they take a section of your tumor and study and dissect to find out the right treatment you should have, looking at all treatments available even for other cancers, so far for some it has yielded miraculous results for some, they moving from the one size fits all approach, and treating every person as an individual. Merry Christmas to everyone,

Profile picture

HealthyNow

118 POSTS
JOINED JUN 2017
December 19, 2017 at 9:59 pm

Hey Nikki, Helen and Rosie – A rainy night here in Taiwan – I feel great – I did not ask about my numbers and was happy as a clam Sunday when I left the hospital from Saturday chemo.  Enjoyed a fabulous holiday meal with about 16 friends at a German restaurant decked out for Christmas.  The doc’s report said SEVERAL tiny nodules but I swear mine says TWO (it’s at school).  I found a wee heater for my office – froze to death yesterday – public schools do not have heat here.  I am enjoying this Christmas Season a lot and am going back to a movie right now!  Catch me up.  Helen it is SO EXCITING you don’t have to have chemo for awhile.  THIS IS HUGE.  Yay!  PARTY.  Sandra  PS My doc is trying metformin to control the cancer – typically a diabetes drug.  Still having accupuncture – 9, 12, and last night 14 needles.  And seeing the herb doc (traditional Chinese Medicine) – I take a liquid with powder in the AM, powder in water lunch and dinner.  You would not belive THE LONG list of plant based herbs in these powders and liquid.

Profile picture

Helen

242 POSTS
JOINED AUG 2016
December 21, 2017 at 1:49 pm

Hi Sandra,

You asked me if I am BRCA positive.  Yes I am, I am BRCA2, , so are my brother and sister, we think the gene was passed to us by our mother who had breast cancer at age 52 in 1971.  My sister has had preventive surgery to reduce her risk, my daughter also has the faulty gene and she has had some preventive surgery and will have more when her children are a bit older.  I have also been on olaparib for 18 months and it meant my levels were in the normal range for quite a while.  I hope it works for you.  Enjoy your holidays and take care.  Helen