10 Chemos

edited November 2019 in Recurrence

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.

Comments

  • 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

  • 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.

  • 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.

  • 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.

  • 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

  • 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.

  • 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

  • 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

  • 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

  • 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

  • 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,

  • 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.

  • 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

  • The MOST trial takes samples from my tumours and tests it against different genetic mutations to find a more targeted therapy.  They’re also doing a complete genome mapping of my blood to see if there is anything they can target there.  Meanwhile while I’m waiting for the results I have to go back on Taxol ?. Fortunately I’ve had it twice before and I don;t have too many problems with it.

  • Helen-


    I am surprised you have been on Olaparib for 18 months - my limited reading sounded like it was a 6 month think with out progression and it costs 10 to 15 thousand usd a month so I was interested in seeing if I could get funding ...then my Doc said he was not convinced it was that great.  He does not have my BRCA results yet.  Wow, your family has been hit hard by this faulty gene.  I have no idea where this has come from...my guess is my father's side - his mom has a brain tumor ...and I cannot recall what my grandfather died of on my father's side.  Did you have HIPEC?  I was offered this the night before my surgery in February - why no one told me I would need six thousand dollars in cash to have it I don't know.  Of course I did not show up with six thousand bucks and took the procedure covered by National Taiwan Health Insurance - the doctors were weary about HIPEC here although at Emory in the USA there is a surgeon who has done about 250 with good results.   Who knows.  All I know is today I am on topotecan/taxol, metformin, Chinese Medicine herbs, accupuncture, Vitamin B12, multi vitamins, calcium plus D and today I felt GREAT!  Going out to a German Bakery looking for Christmas Ginger Bread cookies after I finish this Hallmark movie and eat some more TURKEY - ha ha.  Sandra

  • Hi Helen and Nikki - Chemo delayed this w/e b/c of low wbc.  Hope this does not change the effectiveness of the topotecan and taxol.  Not sad though, I can enjoy more Christmas festivities.  Sandra

  • Hi Sandra, A happy and healthy new year to you.  I hope you are having a nice winter break and are not working too hard on your class planning, that the Principal wanted at such short notice.  I have worked in schools for many years, not as a teacher, but in the front office as the business manager.  I really enjoyed it and I know how hard teachers work.  In regard to your comments about olaparib,  I was on a trial so it did not cost me anything.  There were a number of other ladies that I got to know on the trial and a few of them have now been on olaparib for about 4 years and they have great results from it and are cancer free or it is under control.  I know the BRCA2 diagnosis was a bit of a shock to all the family, the good part is my family members were able to have control and information in regard to their treatment options to reduce their risk of breast and ovarian cancer.  There is a good support group in Australia called Pink Hope and it has an excellent website if you are interested in finding out more information.  You mentioned HIPEC in your last post, what is this?  Helen

  • Hello Helen -


    Oh boy, business manager for schools - that's a toe up job.  Ok, HIPEC is the intraperitoneal HOT chemo they run inside your belly for 90 mins at super hot temps and swish it around.  It can blow out your kidneys and do some other not so nice things but has great results for peritoneal cancer.  It was not covered under Taiwan Health Insurance and would have been 6,000USD.  In the USA at Emory Univ there is a specialist doing only HIPEC but med records review was 1200 and a 100,000 deposit was required to enter the hospital.  Cough cough.  I will check out Pink group.  The olaparib and the other parp inhibitors look like the only way to go with ovarian metasticized to peritoneum with positive BRCA results.  I still have not heard about my BRCA.  Over Chinese New Year I will get another medical record update.  The data just bums me out so why hurry.  Why know?  I am still on topotecan and taxol.  Felt great Sun and Mon and today started to be tired and a teeny muscle achey.  I asked the resident doc "is the weed killer working?"  "What?"  "The chemo"  "You have to ask Dr. Chen"  "Well I don't want data just a maybe yes or a maybe no"  "Yes"  first time I ever saw him smile - so I brought him a drink and some peanut M&M's after my weed killer session.  Do you do tapping?  Basically you just beat on your muscles.  ha ha.  He was doing that.  My Taiwan friend I used to hike with in Nevada does this.  And I do it.  Your family sounds so responsible and together - just like you - just taking care of business and living life to its fullest no matter what.  I turned in all of my data on Friday before our 3 day holiday.  I had so much fun Sun and Mon.  I will stop getting to the hospital before 11:00 or 11:30 on Saturday b/c this is the second Sat I did not get in my room till like noon - the cleaning staff must be backed up.  They work really hard.  I have a two week reprieve then it's 3 on and 1 off.  I think I will be up for a CT scan in Jan and am DREADING that.  (My veins are tender and I don't like the dye.)  I see my Chinese accupuncture docs this week and next week the Chinese internal med doc - who told me "you are getting better and better."  I'll take that.    Sandra

  • Helen -


    I am bummed out.  I just got home from the hospital.  The topotecan/paxol was changed to topotecan/carboplatin.  The doctor said he could not remember the last place he saw me, and, "why don't you go back to America."  Both comments hurt my feelings.  The language barrier is infuriating.  I should not put a face on his comments b/c he does not speak great English.  He also suggested FIVE DAY chemo.  Starting in February.  I forgot to ask for how long.  He seems to resent my efforts to get on a financial aid program for Avastan and or Olaparib or some other Parp inhibitor.  Why he would not be thrilled if I can gain access to these life saving drugs is beyond my comprehension of Taiwanese culture.  He is always saying "my hospital does not have that drug."  I have not heard from the Avastan fax I sent several weeks back.  He has not heard the results of my BRCA taken 4 weeks back.  I want to scream and cry all at the same time.  xx Sandra

  • Hi Sandra, You sound like you are not having such a good time at the moment.  In your earlier post in January you seemed to be a lot better and were happy with your doctor.   With the BRCA testing, I know it does take a while for the results to come back.  With myself and my family it took about 2 months for each of us to get our results back.  Hopefully they will be back soon and your doctor will be nicer the next time you see him.  I think we all get a bit tense with doctor visits and are always hoping our markers are going to be good.  I am sure the doctors must feel uncomfortable when they need to tell us that our markers have gone up again.  After two months off, I am starting chemo again, as my marker has decided to go up again.  Bother!  This time I am just having carboplatin by itself, hopefully that brings it back down again.  I don't do tapping, I walk most days, I have a dog that just loves to go for walks.  I do try to eat healthy foods, however I received quite a few boxes of chocolates for Christmas and seemed to have eaten them all.  They were very nice.  I hope your teaching goes well this year.  Take care  Helen

  • Helen-


    I thought you were on Olaparib.  What happened?  I had to get a third party to interpret what the doctor actually said.  He was not saying "I don't care about you get out of Taiwan and go back to America."  He was saying that because I cannot get funding here in Taiwan I might have a better chance in the USA.  I spoke to Genetech this morning and they will not fund Avastin here b/c my doctor is not registered in the USA.  Then I sent an urgent fax to an oncologist I used to work for in the 90's.  I was ready to refuse my cat scan on Monday and the 5 day therapy.  Take the chips where they may fall.  But my third party friend rightfully talked me out of these unwise choices with time to be angry and scream in my pillow.  I saw my Chinese doc today.  He helps strengthen my immune system with his herbs.  I am sorry your marker is elevated.  I feel really good this week - no side effects - figure that one - topotecan/carboplatin.  I am glad you told me it took 2 months.  I started thinking "oh they lost the blood vials."  You Tube has good videos on Olaparib and Avastin.  Tomorrow we are having 10 visitors from Beijing!.  Keep writing.  Glad you loved your chocolates.  I had chocolate too.  We're not supposed to but dang sometimes that chocolate does the trick.  xx  Sandra

  • Hi Helen - I am frustrated.  Genetech says no way on free avastin.  My doc calls my whole stomach a tumor.  My stomach is my stomach it is not some gross thing with feeding blood vessels like he took out last February.   I put up a Go Fund Me for avastin for one year - 36,000.  I have no idea how much money he would need to get started.  Docs here are not involved in money, where you live, how you earn your living...it's not like the US.  Avastin is 3,000 an injection.  The docs are all about diagnosis and treatment and the occasional chat about their children and shoes.  LOL.  Anyway, he was saying I might have a better shot at getting free avastin in the US, and I would, but I don't have a job, house, doctor, insurance, or car, or even a city in mind - lol.  Back to Parp inhibitors.  Glad you told me it took you 8 weeks for BRCA results.  I would prefer a simple olaparib pop in the mouth pill over a blood vessel murdering drug that can cause death and a bunch of other knarly side effects.  If the benefits are the same.  Tomorrow am is blood work and Sat is more weed killer if the numbers are right.  I am sorry your CA is on an ascent.  ICK I hate this cancer Helen.  I have a scan Monday.   Won't even ask what they find.  Saw my internal Chinese med doc Wed night - he smiled at the sentence "I am feeling feisty."  Sandra

  • Hey Helen - is it true that eventually all chemos stop working on ovarian/peritoneum cancer?  Do you have a link?  Doesn't olaparib give you longer juice than avastin (so to speak?)  Or one of the other PARP inhibitors.  Would you have a second surgery?  If so would you do HIPEC?  Would you do tube in stomach for hot chemo?  Thanks ...just me with monkey mind.  S

  • Helen - I am writing you in THREES - lol.  You are very fortunate to have a dog.  Lucky you, and to have chocolates - both do wonders for the soul.  I guess I am not good with the ups and downs of this disease.  S

  • Hi Sandra,


    I am sorry, I mustn't have explained my self properly about the olaparib.  I was on a trial for olaparib over two years ago.  I started it in November 2015, after I had bowel surgery, due to an enlarged node.  My marker was nearly in the normal range and the olapabrib was used to keep it in the normal range and I also had 5 months of a chemo tablet as well.  I did get to the normal range for my marker and it stayed down there for 18 months, however it obviously didn't continue to be effective and my marker went up again, so I didn't meet the criteria for being on the trial and went off it in May 2017.  I then had to start chemo again, as my marker was up to 1500 and after finishing the regime of chemo in November last year it was brought down to 90. It is now back up again and I hope this next lot of chemo will bring it back again.  I am not so happy about the fact that I have had only two months off of chemo, however I will be positive and I am sure it will work once again.  In answer to your question about whether chemo stops working on ovarian/peritoneum cancers, I don't know the answer to that I just know that they are researching all the time and seem to be coming up with new chemo drugs and hopefully it will be one that destroys the cancer totally!  I am trying very hard to avoid further surgery so am not thinking about doing HIPEC or tubed hot chemo.  As my scan only shows a couple of enlarged lymph nodes and one node that is in my abdomen that is enlarged, I don't think surgery is needed at this point in time.  My understanding of how olaparib works is that it is a maintenance type of drug that helps the faulty genes fight the cancer recurring, rather than a drug that actually kills cancer cells.  I hope this helps you and I hope your scan is good.  Let me know how it goes.  Helen

  • Hello Helen,


    I am overwhelmed and exhausted - 9:05 p.m. did not have to stay the night as expected for scan - I read your letter and was shocked about its contents - will actually copy it down and study it.  Much useful data.  I feel I get double speak from my doctor whom I love but not deliberately - he told me yesterday that eventually all chemos do stop working and then u have about 3 mos before death - but I like your ideas better so will go with them - he is very excited about trying me on 3 rounds of avastin.  Have u been on it?  I did not know some of the stuff you said about olaparib and what disqualifys you.  He also said I would have Feb, Mar, Apr off of chemo but we see that's not happening.  More later.  xx S

  • Hi Sandra,  Sorry to hear that your last lot of chemo left you overwhelmed and exhausted.   Hopefully you are feeling better after a restful night.  With the olaparib, please note that I was on a trial with guidelines and my marker going up didn't suit the guidelines. The trial I was on, was run in Sydney and my oncologist recommended me for it.  I can still be on olaparib by script from my oncologist if I wanted to, however it stop being effective, so I have chosen not to continue it.  I haven't as yet tried avastin.  Take care Helen

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