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CA125 up again!!

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

I was shattered to hear this week that my CA125 has jumped another 102 points to 525 (my 6th consecutive rise!).  I am continuing on with Topotecan but my Oncologist wants to add Avastin so that is planned for tomorrow.  Has anyone else had this combination?

Another complication - this week at chemo discovered my portocath has flipped over and can't be accessed!  It was back to the canula in my hand, difficult with my veins but looks like surgery to fix it.  Will find out about that tomorrow.

To add to that I have a pretty (ugly really) swollen ankle!!  U/S shows no sign of a clot which is a relief. 

Sorry about my whinge but it has been a bad week!

Julie x

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

So sorry to hear the CA125 number is up again.  Hope the new drug combo works for you. Sorry also to hear about all the other issues.  Hope they can fix the portacath, tho I personally dislike mine.  I had monthly infusions of Remicade for my rheumatoid arthritis for a decade before starting cancer chemotherapy last year, and I never had a port.  They used to sometimes struggle a bit to find a vein in my hand, but not if I remembered to hydrate myself thoroughly the day before.

I haven't had a CA125 reading for several weeks, but luckily mine continues to decrease -- to 16 the last time.  I'm now thru (for a LONG time, I hope) with Carbo/Taxol & am only on Avastin.  Will be getting my next infusion July 2, & probably a new CA125 number that day as well, from the blood they drew 3 wks ago. Hair seems to be starting to regrow, but it's very thin.  I hope that changes.

Hang in there!  You are my inspiration & my guide, & I wish you all the best.

 

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Julie,

So sorry to hear about all your issues. I can relate to the CA 125 deal for my cancer is back and my CA's have went from 338 in April to 1563 in June. Blowed my mine for the CT scan is showing nothing but my abdominal wash out was positive with cancer cells. They started me back on 4 rounds of chemo (carboplatin) which didn't treat me so good. Took me 7 days to get over it.

As for the Avastin I had 6 treatments of it the first time around and because I am was in a clincial trial and I still had cancer I couldn't receive anymore of it. I was taking carboplatins, taxol and avastin.

I had issues with my Port also when I finished my first treatments. I had to have it removed. So this time around they are going to try having me take it in the veins which went OK for the first one.

This cancer and treatments are just ongoing. You hang in there Julie and I will be praying for you.

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

So appreciate all your wonderful support and comments and continue to think of you all and wish you well in your journey.  I havent been able to log in for a while so have now re-registered and hope that solves the problem.  

I had a further CA125 last week following my first two infusions of Avastin and have an improved result!   Not a drop but a very small rise of 25 points up to 550 so here's hoping that the next one will be a minus number!  I also had my Topotecan last week.   Unfortunately Avastin is not approved on the "free list" here in Australia for Ovarian Cancer so it is very expensive but we'll give it a go for a while!!!   Can't do a big holiday this year anyway!   

My port surgery went well and this is now reattached the right way round and working.  Ugly scar but it will settle!  Thankfully the swelling in my foot/ankle has also settled with the help of water pills!

This weekend we are heading away for a few days up north for a bit of warmth from the sunshine and good friends we will stay with.   Getting so much joy from darling grandson now 8 months old!   Wish we could bottle that - I am sure it is great medicine.

Love to you all and sending you power and strength!  xx  

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

SO glad to hear from you again! And I'm glad to know your CA 125 number seems to be staying in a manageable range. My oncologist told me this week that the number can vary slightly due just to lab variations. Mine had been 16 for 2 consecutive testing periods, now is down to 15 (& I remain on Avastin, of course). My hair shows further growth, though it's very sparse. But I got a great new wig from the cancer support center at my oncologist's, so I'm much happier.

I've made a couple of long trips so far this summer, one solo when I was happy to find I managed OK, & am planning another solo trip next month half-way across the country to my older brother's 50th wedding anniversary. Looking forward to seeing my niece, nephews & their little ones, so I can imagine how much you are enjoying your grandson. 

Enjoy your travels & your family, and thank you so much as always for your encouraging words. As I said, you are my inspiration.

Best Friend
Posts: 222
Joined: May 2011

Hi Julie. Hoping you remember me! My mother was using the doxil the same time u were. Well she only had a 2 month period without chemo and than started doxil again. After two treatments her ca went up to 600 and they sent her to better hospital down in the city for a desensitization so she could receive her carbo again. Now they found ascites and pleural effusion which she never had before. They told her it wasn't alot and not to worry but i know this can be a bad thing. I need help

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Of course I remember you.   Good to hear from you again but so sorry your mother had only 2 months off chemo.   Are the Drs going to drain the ascites and pleural effusion or are they thinking the carbo will reduce them?  So hard not to worry but don't go jumping to conclusions!!   Interested to hear about the desensitization to carbo.  Do they do that by administering small frequent amounts?   I think you need to have another talk with the Oncologist and hopefully he/she can put your mind to rest a little.   Sending you both hugs and wishes that the next step will get you safely over this hurdle.

I have my next CA125 and Topotecan next week so a little anxiety starting to build however just back from a lovely few days away with my hubby and was able to forget about it for a bit!

Julie      

lgppdx
Posts: 8
Joined: Aug 2013

Hello all,

My name is Lisa, and my mom was diagnosed with PPC in May 2011.  It's been a rough two years with very few breaks from chemo (six months was the longest break).  Lately, she's been suffering from distension, cramping, and digestive troubles, and she's been through 4 colon cleanses to push things through her system.  She's on laxatives (Miralax + Senna), and sometimes has very little action, while at other times, she's passing small amounts of diarrhea all day (with very little control, so she feels quite trapped at home.  So frustrating and uncomfortable for her...it makes my heart ache.  She's had several x-rays and CT scans, with did not reveal a blockage of any kind.  Anyone else struggle with these digestive troubles?  She went in to explore draining due to ascites, but there wasn't enough fluid to drain.

Furthermore, her CA 125 numbers have continued to climb since May...from ~70 to ~140, then to 442 and now 937.  She was on Gemzar, then switched to Topotecan, but with this latest climb to 937, I'm wondering if they'll try a new treatment?  But what?  Doctor is reluctant to use Avastin because if she needs surgery, apparently it doesn't allow for healing very well???

Just curious what other treatments might be a possiblity, beyond Carbo, Doxil, Gemzar and Topotecan -- and what people's experience with them has been.

Thanks for listening. Trying to stay positive.

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Hi Lisa

 

So sorry to hear your mother is having digetive troubles.  In a way I think I was fortunate in that I had my large bowel and rectum removed in my 20's for Ulcerative Colitis and have had an ileostomy for many years.  This has funtioned well for me and I guess one less thing to worry about!  I have now had 4 treatments of Avastin added to my Topotecan and my last reading of CA125 had dropped by 28 points so a start!  Waiting on next weeks test now to see if that is continuing with fingers and toes crossed!  I am not sure what would come after Topotecan and the others you list (all of which I have had) - maybe repeating Carbo/Taxol??

Best wishes to your Mum and you.

Julie

lgppdx
Posts: 8
Joined: Aug 2013

Thanks for your reply, Julie.  I was wondering if maybe they'd try repeating something.  We shall see.  Glad you are seeing a decline in your CA125.  My very best wishes to you!

 

Take care,

Lisa

Nflinchum
Posts: 73
Joined: Jun 2012

I was diagnosed a year and a half ago. I had 9 treatments of carboplatins, taxol and 6 of avastin. I developed some digestive problems then but it wasn't bad. I was in remission for 9 months. it came back so I am being treated with 4 rounds of carboplatins. I was told this is one of the milder drug and I should have very few side effects. I have major digestive issues with my two treatments. It takes me 8 days to get over it. My GI dr told me that on the surface of your intestines there are lots of rapidly growing cells and when you take chemo it's kills the good cells so therefore it causes digestive issues. I am taking nexium, a GI cocktail as needed plus I have to watch what I eat. I hope things get better for your mom. You are in my prayers.

lgppdx
Posts: 8
Joined: Aug 2013

Thanks so much for your reply.  I'm sorry to hear about your digestive problems.  No fun at all.  I hope the Nexium has brought you some relief.  I will pass that suggestion on to my mom.  Wishing you comfort and good results with your treatments.

 

Best,

Lisa

seatown's picture
seatown
Posts: 212
Joined: Sep 2012

Hi, Lisa –

Just wanted to weigh in on Avastin & surgery. It’s true the docs don’t like you to be on Avastin & have surgery, but being on Avastin is not a total bar to surgery. I’ve been on Avastin® (+Taxol/Carbo) since March, on Avastin only since May. Since May, I’ve had to have oral surgery on 2 occasions while on Avastin. My oncologist was not thrilled; but in our discussion of what to do, he mentioned he’s had patients have major abdominal surgery while on Avastin. Also, FYI, I need foot surgery & my oncologist said he could stop Avastin for a while for me to have the surgery if I wanted—which at this point I do not.

I understood you to say your mom’s doc doesn’t want her on Avastin because she MIGHT need surgery. Just wanted to let you know there is another way of thinking about it. I look at like when you have scheduled surgery & they say you can’t eat for 24 hrs beforehand vs. when you need emergency surgery (like after an accident, etc.), the surgeons have to take you the way they find you.

I’ve been blogging about my experience on Avastin & other PPC adventures at

http://CaringBridge.org/visit/CaroleSeaton/

Good luck!

Carole

MJensen
Posts: 93
Joined: Oct 2012

Hi  Lisa,

I usually comment on the OC board if I comment.  I usually don't get much of a response but I did want to share something with you. I have been on everything mentioned to include the Avastin.  Some things work for awhile and then the cancer gets smart.  I have lots of digestive issues and recently had a stomach tube put in to empty my stomach in the event of another bowel obstruction.  It was painful as it was laying on a rib and nerve.  That being said my CA125 was up to 2500 after Topotecan wasn't working.  I felt I was losing the battle and the primary source of my cancer was actually in the peritoneam.   My Dr tried Xeloda next. Daily pill with 2 weeks on and a week off.  You take the pill 2x a day.  Causes hand / foot syndrome so you have to keep skin hydrated with Udder Cream ( or similar) 4 x a day.   That didn't work for me either and I was getting progressively worse  and CA125 was now at 3100 and had to start hooking myself to an IV at home for 6 hrs a day to hydrate myself.  Dr was also talking  TPN which is nutrition thru IV.  It is a 12 hr process.  I didn't want this.  Since then, my Oncologist has now tried a new chemo.  Pemetrexed (Altima) which he said had a 10% chance of knocking the beast down again.  I have had 3 treatments (3 weeks apart) and my CA125 has gone from 3100+ to 471 after the second treatment.  Will see next CA 125 results in two weeks.  My blockage has cleared, at least partially if not fully.  I had the stomach tube removed because of the pain it was causing.  That has helped me immensely.  So, I just wanted to say there are still things out there that may work for your mom and others.  I thought I wasn't going to make it past Aug.  My daughter had asked me to please hang on until Aug as she was defending her dissertation mid Aug and was set to get her PHD in Phycology.  I made that celebration!!!!   I have even planned a trip next weekend in to the Sequoias.   I didn't think I would ever have another vacation.   So I feel very fortunate this has worked for me....  You may want to ask the Dr about this drug.  If they decide to try her on Xeloda please take the hand/foot syndrome seriously.  The drying and cracking is painful!   I wish you, your mom and all the ladies going through this nightmare all the best!   One day at a time!   love, light and positive healing energy always!   Xoxo Michele

lgppdx
Posts: 8
Joined: Aug 2013

Michele, thank you so much for sharing your experience.  I am so pleased to hear about your CA 125 reduction on Altima.  That is not one I had heard of.  My mom is in a similar position -- her doctor listed possible treatments after Topotecan, but said most of them had undesirable side effects and would only offer a 10% chance of helping.  Nice to know you had such a positive outcome.  I'm so happy you were able to make your daughter's graduation -- what a wonderful memory!

 

Yes, one day at a time.  My very best to you, Michele, as you continue on this journey.

 

Sincerely,

Lisa

MJensen
Posts: 93
Joined: Oct 2012

Thank you Lisa -

I appreciate your well wishes!   I was at the cancer center today for a booster shot.  I ran into a friend (women I met during treatment) this afternoon.   We were both diagnosed with Stage IV Ovarian Cancer 3 years ago and have been on chemo ever since.  We both seem to move to new drugs at the same time oddly enough.  When Topotecan wasn't working for her anymore her Dr put her on Taxatere.  Taxatere didn't work for me so I went on to Xeloda and now Altima.  The Taxatere (? Spelling) is working for her as seen by her CA125 coming down and ct scan.   She has some digestive issues, as with most chemo, but beyond that she said other side effects have been minimal.  She is losing her hair but isn't concerned with that.  She is happy it is working and she is feeling better.  Not sure if this is on your mom's list.  BTW with the Altima I am on, my hair has started to grow back and I am not wearing a wig anymore.  I just wanted to let you know there is someone else out there that has had some success after Topotecan.   All good thoughts to you, your mom and family!   Michele

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Thank you Michele - your post is reassuring that there are still other treatments out there!  So thrilled for you that you have had a fantastic result from Pemetrexed (Altima).  I will mention this to my Oncologist when I see him next as I have had my last Topotecan treatment as CA125 rose yet again this week!   He is having a big think about what to put me on next!   Not sure that I would be keen on the Xeloda as I had terrible hand and foot with Caelyx (Doxil) and it did no good for me!  

Wishing you continuing great results.

Julie x

MJensen
Posts: 93
Joined: Oct 2012

Hi Julie,

So sorry to hear you had a rise.  I think we were all very hopeful.  I think you should at least ask ask about this drug.  I live in Santa Barbara Ca and it is a pretty small CC but affiliated with Sansum Clinic! but still not a huge facility.  I haven't been able to get into any clinical trials because of my stage of cancer and all the surgeries etc.  I had a bowel obstruction and they had to bypass a large amt of intestine and put a stoma in the transverse colon.  Had several back surgeries due to brittle bones so needEd 3 Kyphoplasties. Had my  hysterectomy and several exploratory surgeries for a second and third look.  Anyway all of this keeps me from any clinical trial.  I asked for a Parp Inhibitor under compassionate use, but nothing so far.   I have been lucky in that side effects on Altima have been minimal except for some manageable digestive issues and tired some days.  

I think you have one of the best outlooks of anyone I have seen going through treatment and your smile reflects what a beautiiful and deserving person you are.  I hope if you try this chemo or any other treatment you will knock this down again!  I had my third treatment a week ago.  I will have bloodwork and next treatment in two weeks.  I will let you know how it goes.  I see my DR every 3 weeks.  He keeps a very close eye on me!   He was shocked when the numbers fell so fast and was happy I was able to get off the daily hydration and remove my stomach tube.  My whole family and my Dr (I think) thought I was in final stages in June.  You just never know!!!!!  No crystal ball with cancer!  May all your days be filled with sunshine!  Sending you positive healing thoughts every day!!!!   Sincerely Michele

lgppdx
Posts: 8
Joined: Aug 2013

Hi again Michele,

My mom and dad live in Oregon but spend a bit of the winter in Santa Barbara (such a gorgeous place!). While in SB, they were able to see Dr. Gregg Newman at the Sansum Clinic and really appreciated his warmth and professionalism. Glad you're receiving good care there and, again, thank you for sharing your experience. I will pass it along to my mom.

Best,

Lisa 

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Thank you so much for your post and encouragement Michele.  What a history you have!   You are one brave fighting lady!   Looking forward to hearing how your next bloods go.  Such an amazing result so far - so thrilled for you.   Better than winning the lottery isn't it!  

I will discuss Altima with my Oncologist next week,  I haven't heard of it here in Australia but he will know!

No - no crystal ball and we must enjoy everyday to the MAX!   How long since you were diagnosed?   For me it will be 2 years December 7th.  When I was first diagnosed Dr Google indicated 12-18 months so I am ahead already!!

Keep up the good work!

Julie x

MJensen
Posts: 93
Joined: Oct 2012

Hi Julie!

Just wanted to give you an update 3 weeks later.  The drug is Alimta not Altima.  Had bloodwork yesterday and chemo today. My CA125 was 471 3 weeks ago and was 375 yesterday so still going in the right direction.   Hope your Dr has figured out what to do next for you!  Please keep us posted on your updates.  Positive thoughts and energy to you and everyone fighting this dreadful disease!   Sincerely Michele

Rosamond M
Posts: 87
Joined: Apr 2013

Julie terribly sorry to hear your news. You are certainly having a rough time

and you have every right to have a whinge.

With the warmest of wishes for things to improve for you,

Rose. x

 

 

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Yes it was a bit of a shock.   I am hoping that my infected portocath may have contributed to this rise.   I had surgery on Monday to have it removed and will have another installed in a week or so on the other side.  In the meantime I will have to put my skimpy veins into the kind care of A & E Drs in the hope that they can put in a cannula for my next treatments.   I have Avastin tomorrow then a week off before starting something new.

Hope you are keeping well.

P S Love your poetry!

Julie x

MJensen
Posts: 93
Joined: Oct 2012

Hi Julie,

Yes, I have been through a lot which seems to be the nature of the beast.  Alot of us go through so much and people always ask "how do you find the strength" but as we all know....you do what you have to do.  I was diagnosed with Stage iV Ovarian Cancer Aug 6,2010.  I had been chasing GI problems with my Gastro Dr for a year.  They said IBS, Hiatal Hernia etc.  all the common mis diagnosis.  Finally after putting me thru a battery of tests for Gluten intolerance, Gerardia etc I finally went to the ER and they did a CT scan.  It was pretty glaring!  Besides my ovary it was in my bladder, uterus and peritoneum with a fair amount of ascities.  The unfortunate part is after surgery and debulking it doesn't show up well on a ct scan because I have frosting or seeding throughout the peritoneum so it is hard to see.  We use the CA125 as a way to monitor me even though it isn't that reliable, also by how I feel.  If I have pain or a bowel obstruction I feel it.  With Altima you have to take vitamin B daily and you get B-12 shots.   Infusion time is about 1/2 hr.   Pretty quick compared to other chemos I have been on.  Please let us know what your DR decides for you and if he would consider Altima for you.  I hope you find the right one to knock it down again with minimal side effects!   Please keep us posted.   I will let you know my results next Wed.    Love, light and positive, healing energy always!!!!   Michele

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Ladies,

I am having many issues as well as all of you are. I had bloodwork Tuesday and my CA 125 test results had jumped from 1552 to 2900 after my 3rd chemo of Carboplatins. Now my Dr. has decided to give me the PET Scan next Friday. I meet with Dr. on the 18th to discuss the results and what my treatment plan will. It is really discouraging. I am having major digestive problems along with neuropathy. I have problems sleeping and I never feel 100%. I try to be upbeat and positive. Has your doctor given you ladies a prognosos. Also I have gained so much weight and can't see to get it off. Take care and I will keep you ladies in my thoughts and prayers.

Nadine

 

MJensen
Posts: 93
Joined: Oct 2012

Hi Nadine,

I am so sorry to hear that your marker is going up while on your treatment.  Hope he can find out what is going on after your pet scan.  I am not sure what digestive issues you are having but that can sometimes make your CA125 jump. Mine would jump when I had diverticulitis and with bowel obstructions.  It may be something else causing yours to jump. I think your Dr needs to find a different cocktail for you.   I was pretty sick in June and we all thought I was on my last leg.....then I went on this Altima and I was able to recover again.  The DR had said that the Altima had a 10% chance of working.  So far it has been good to me.  I am not sure if you DR has put you through Gemzar and other chemos.  They had a better chance of working and Gemzar worked for me for awhile.  You may have other options.  As for gaining weight, maybe you have some fluid retention or ascities.  The pet scan should let them see that.  I never feel 100% but probably because I have been on chemo for three years now! Nueropathy is horrible. I have it pretty bad.  I use Pol cream and take some Alpha Lapoic Acid but nothing really helps that much or is reversing it.   Please let us know how your scan goes.  Wishing you strength to get thru this and to find something that will work better for you!  Please keep us posted.  Sending you well wishes and positive energy always!    Michele 

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Michele,

thanks for responding. I had the PEt scan Friday. I go to the dr wed the 18th. The digestive problems I have are really bab indigestion. I take nexium 40 mg twice a day. The first time I had 9 treatments of carboplatin, taxotreatment testaments Of avastin. My CA'S came down to 48 and may CT scan showed no visible cancer to the eye. I think there were still cancer cells iadobo tummy. It came back 9 months later. The dr put me on carboplatins 4 treatments. I have had 3. Due to have another one wed. depending on results of the pet scan. It will be interesting to see what the dr puts me on next. Thanks for the info. I will post what happens next. Take care and you are in my prayers.

nadine

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