Hi Helen

Thanks for your note Helen.  I wanted to share my good news - a donor has given six thousand dollars so that I may have my first 3 rounds of avastin here in Taiwan.  I have scans Saturday morning for liver, kidneys, bowels, stomach, lungs to see what the cancer is doing - I was thrilled I did not have to take off today - labor laws changed and scans were only being done for emergency patients.  This influx of funds has given me hope - I will not have to have the 5 day inpatient chemo.  Yet.  I hope your carboplatin drips go ok and you continue to walk your dog and eat chocolate.  I am slow cooking at school - today pork, bok choy and corn.  Enjoying our 65 degree weather.  Completing online classes to renew my teaching license.  Unfortunately I will not be making plans for sailing this summer until some kind of resolution is reached regarding my health.  I had a lovely hike a week ago and was able to go to a birthday party last night, and go to church.  Yay.  x S

Comments

  • Hi Sandra,  I was so pleased to read about the generosity of the donor helping you with your rounds of Avastin.  There certainly are some very generous , thoughtful people out there.  I hope your scans all went ok.  My dose of carboplatin went as planned and I found day 3, 4 and 5 after the treatment not so good, however I am now better and are going for a short holiday down the coast tomorrow.  Keep hiking, partying and churching.  Helen

  • Helen-


    Sorry your post carboplatin days were ick.  Yeah, the side effects can make us wonder - take away our positive mental attitude, our determination, our drive.  Make us ready to say forget this.  But your reward is outstanding - on the coast.  Nothing better my friend.  I had my first round of avastin on Sunday morning.  My scan Saturday, which I was very touched that Dr. Chen read from HOME, showed the weeds have gone visiting to a neighbor's yard - close to a rock star's yard - so he got right on that and ordered the first shot.  No bushes though.  (enlarged nodules close to renal artery).  I am in for a surpirse on Feb 10th - my next weed killer session.  Dr. Chen could say "oh whee we are doing 5 day and avistan."  If he did I would say OK, thank you!  I have adjused to a maybe 5 day 48 hour 3 day 2 hour experience.  It takes awhile.  The emotions.  You know?  xo Sandra

  • Hey Helen - me again -I am so grateful for you and the other ladies in this group.  I was just reading a paper from my doctor which states I am platinum refractory.  I then encountered this article.  OMG talk about Doctor speak and the last thing to make me want to do the happy dance.  https://robertanagourney.wordpress.com/tag/platinum-refractory/   This is why I simply say to him I am game for whatever you would choose for your mom, sis, wife, daughter.  xo Sandra

  • Hi Sandra,  Thanks for the article on platinum refractory.  It was quite interesting and it is good that they are researching and finding out new information about this cancer.  I am feeling better and will be having another chemo treatment this Friday.  I hope your treatments go ok and that the avistan agrees with you.  Take care  Helen

  • Helen and all -


    It's Lunar New Year Holiday.


    The Avastin took my CA125 from 215.5 to 72.6. This is HUGE.


    The Ct Scan is not nearly as bad as I thought - having 2 more people help me read it.


    Wanted to share this article


    http://www.abc.net.au/news/science/2018-02-16/ovarian-cancer-may-be-passed-down-through-dads-x-chromosome/9442390

  • Hi Sandra,  What great news that your CA2125 has dropped, it is nearly in the normal range.  CT scans can be a bit hard to read, it is good that yours wasn't as bad as you first thought.  I try to have my CT scan done at the same place each time, so the same person reports on it and then you can compare them with past ones.  I have a few enlarged nodes, but not too many.  That was an interesting article about dads x chromosome.   Did you enjoy your Lunar New Year Holiday?  I am having a four week break from chemo, as we are going to Adelaide to see my sister and her new grandson.  We are also having a week in Victor Harbour, which is very close to Adelaide and is on the coast.  Keep walking up those mountains and having tea with your friends.  Take care.  Helen

  • Helen -


    Seeing your new great nephew will be very special.  I would like to be on the coast!  I woke with a temp of 37 - fluctuating all day between 37 and 39.6....ibprofen takes it down.  My big friends and dogs day in my old fishing village was cancelled.  Tomorrow is complete blood count - wonder if they can do it with temp.  After was an acupuncture appointment.  I went on a very nice bicycle ride Friday - about 4 hours - saw lots of friends over the New Year.  Did a foot massage.  Today has just been sleep and horizontal Grace and Frankie watching - so funny.  Happy Trip.  Sandra  PS so are enlarged nodes a big deal?  We have decided the nodes identified in my scan are dead.  Do they just liquify and disappear?  Not surprising there are more seeds/nodules in abdomen b/c the CA was so high - but they have not left the yard so maybe the next shot of Avastin will kill them off.  The thing in the liver is not cancer.  Wonder what it is.  Some vacular thing.  less than 1 like .7cm.

  • Hello Helen -


    Just cruising the net looking for stuff on avastin and olaparib and came across Trudy Crowley - what a gem  -https://www.youtube.com/watch?v=mWYUIlPipjQ ....they said she has 12 months - how do they know that for fact???  I heard a lady say they told her get her affairs in order - 3mos - and that was 12 years ago.


    I sure wish Taiwan could offer me benvazibab (ben v z beetle bum/avastin -- LOL) and olaparib (lynparza) - I do not want to have to move to the USA just to get these drugs - it is going to be a nightmare.


    You are off having fun as you should be - check out The Doctor Blake Mysteries and hayneedle.com. x S

  • Hi Sandra,  we go away on our trip to Victor Harbour tomorrow, so probably won't be in contact for a while.  Trudy Crowley is a gem, she has done lots of fundraising.   Keep having the Avastin, it seems to be doing the trick for you.  You asked about enlarged nodes, it is not a big deal, I suppose it just means that there is a bit of activity happening.  I like the idea of dead nodes!  Take care  Helen

  • Helen-


    Have a grand time.  So happy for you.


    In the hospital for tonight - the cocktail is tope, carb, avastin!


    So many women here tonight who had surgery this past week.  WARRIOR girls.


    Thanks always for your words of encouragement.


    xo


    Sandra

  • Tuesday evening, 9:24 pm March 13, 2018


    Dear Helen,


    On March 10 I received the results to my BRCA test - taken Dec 3, 2017.  I am NOT Brca positive.  I do have the st14 tumor suppressor protein gene like cousin to BRCA - I will know more tomorrow I suppose when I pick up my medical records.  My oncologist said I am still in the class of people platinum refractory/resistant needing a PARP inhibitor.  My carboplatin was stopped as of next chemo 3/24 - just topotecan and avastin because of progressively worse vomiting and nausea.  How are things?  The weather is just gorgeous ...we had an earthquake on the middle east coast - over 200 dead - this was several weeks back.  Do write.  x Sandra  PS I wanted to share this http://www.cancernetwork.com/oncology-journal/counterpoint-there-still-role-intraperitoneal-platinum-therapy-ovarian-cancer

  • Hi Sandra,


    So, you are not BRCA positive, but because you have a protein gene that is a cousin to BRCA you are able to have a PARP inhibitor.  That is good. Will that be olaparib?  I feel a bit nauseous with the carboplatin, however I take some anti nausea tablets and that seems to help.  We had a good time in Adelaide and Victor Harbour, the weather was good, accommodation great and it was lots of fun meeting my new grand nephew and his family.  We also visited Kangaroo Island, where we saw some sea lions and NZ fur seals.  Because of our holiday, I had delayed my third round of chemo of carbo platinum, so I had it last Friday after we had come back.  I am feeling a bit tired today, that is all.  Take care Helen

  • Hi Helen-


    You have a better grasp of the 14 thing than I!  Will receive the pharmacist's translation on Wednesday.  Your trip sounds really fun.  Carboplatin started out ok, then got more intense with vomiting, and then vomiting all night!  So now no more.  Is this your first round of carbo?  I have been on and off of this the whole time.  Next chemo 3/24 with avastin and topotecan.  I cannot have a parp until I get in a finanial aid program.  Later!  Love, Sandra

  • Hello Helen from National Taiwan University Hospital-


    Good news CA125 to 50.6!


    The BRCA test is the PALB2 gene mutation https://www.ambrygen.com/sites/default/files/web/understanding_your_results/cancer/palb2_positive_uyr.pdf


    Hope things are great for you - next CT Scan mid April - will learn more about 4cm tumor in/on nerve near renal artery.


    Looks like UCSFMC will be my second opionion and gateway to Olaparib in July 2018. This made my doctor VERY VERY happy.


    Love Sandra

  • Hi Sandra,  I am sorry to hear that the carbo makes you very sick, surely they can give you something to help with that.  I have had 3 rounds of carbo/platium so I am half way through.  My marker is showing a slight reduction, which I am pleased about.  My latest CT scan showed I had some ascites around the liver, which would explain why I am feeling a bit bloated at the moment, otherwise the scan was quite good.  My next oncologist visit is after Easter, no doubt we will discuss maybe having the ascites drained off.  I am pleased that you maybe having olaparib in July.  Yah!  Enjoy your Easter break.  Take care Helen

  • Hi Helen-


    April 5 here - 3 day tomb sweeping holiday - I am enjoying hiking in Yangminshan National Park - forest bathing works wonders!  I took you hiking with me and have thought of you daily - hope your CA125 is going down down down and no draining is necessary -- that the ascities just drys up - I found ascities draining to be the worst pain EVER.  Topotecan this Sat.  Blood in the am - then back to the national park.  xo Sandra  ps my CA125 went from 225 to 50 with 2 shots of Avastin.... pretty cool!

  • Hi Sandra,  How did the hiking go?  I really admire how energetic you are, I am sure that the exercise you do and all that forest bathing must help your body absorb the treatments.  I did have some fluid drained about a week ago and I do feel a lot better and less bloated. I am having a change of chemo, I am now on weekly taxol and the carboplatim has been stopped.  Good to see that the Avastin is working and that your marker is coming down.  Helen

  • Oh Helen did the ascities draining hurt?  Big big hugs.  How is the taxol?  I think the carboplatin is wicked - the side effects were the YUCKS.  Well your spirits seem bright.  I am a bit miffed right now - my second opinion, July appointment - Olaparib angel with AstraZeneca failed to specify what records they want (it's Univ of Calif. San Francisco Med Ctr).  Anyway I feel like NTUH is giving me the run around and that UCSFMC is giving me the run around - just say for gosh sakes what records.  What is so complicated about this.  I think it is NTUH actually bc they are backwards and not up to date with swift record transfer - like 1950's.  But it will get sorted.  I just finished watching season  7 episode 9 of HOMELAND - omg it is so good - parallels what happened in USA election in 2016 and what is going on in our govt right now.  So intense.  If you don't know the program - the main character is a woman and she is bipolar - through 7 seasons she has taken us to Afghanistan, Iran, Iraq, fallen in love with a turned returned Army man - Brody - who eventually ends up hung by a crane in Iraq (I think) ...it's all so intense.  x Sandra

  • Hi Sandra,  The ascities draining was not too bad, it hurts at the start when they are putting the needle in, but after that it was fine.  I certainly felt a lot lighter afterwards.  The Taxol is going well and I am not as tired as I was when I was on the carboplatin.


    I am sure the doctors and hospitals are doing the best for you, maybe they are very busy and the record transfer is a bit more complicated than they thought.  I know it is hard to be patient sometimes, however I think that is part of our journey.


    I have never watched Homeland, it sounds like a good show.  I love AFL footy and now that the footy season has started we tend to watch lots of footy games on foxtel.  Take care  Helen

  • Sunday, April 22 2018 10:25 am


    Hey Helen!


     


    AFL FOOTY is not on F movies here in Taiwan.  I will check Coke and Popcorn too.  I am having MANY challenges right now from EVERY front!  ha ha.  But the deal is I am still breathing and able to meet each challenge.  Most of it is government BS .... I uploaded all 850 ct scans twice and they are in the wrong FORM.  I waited 5 months for my FBI USA fingerprints to be told by the recipient the correct FORM was not used - now bare in mind they got a valid, legal fingerprint clearance from the FBI - so how it could be on the wrong form.  Oh for God's sake I cannot get started - it is all too frustrating.  ha ha.  I watched former first lady Barbara Bush's funeral this morning - good lessons for living TODAY.


    Big hug - no more ascities....FUN days Helen.  That's the goal - for as long as we are here.


    Sandra

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