I was diagnosed with stage 4 uterine cancer in Jan of 2016. I had a hysterectomy, then chemo, then remission for a year, then it came back. Then we tried Doxil, which stopped working, so on to Carbo Gemzar... Basically the CA 125 showed my levels going down after 1 or 2 injections, but then started going up again with both of these chemos.
My doctor says sometimes the tumor gets it's own blood supply? He is going to try Avastin with the Carbo Gemzar which he says will most likely work. This has me scared. I don't know what this means. Has anyone else had this problem? I am also nervous about Avastin. I know a lot of people here take it with Carbo Gemzar and I would appreciate any feedback. I hesitate to read the side effects. Last time I did that I wound up getting very worried about things that didn't even happen to me. Thanks so much for reading and responding if you can.
Written by
carolleigh
To view profiles and participate in discussions please or .
I have stage 4 ovarian cancer, diagnosed July 2014. I had hysterectomy, and carboplatinum and taxol. Remission was 18 months. Carbo and taxol again, remission for just under 6 months. Now I am on Lynparza, a fairly new oral chemo I take 4 pills day, side effects arent bad. Within 6 weeks my CA125 was down, at 10 weeks my CA125 is normal. I am hoping this works for a while. Ask about these new PARP inhibitors, there are a few new ones. Good luck!
I asked my doc about the Parp and he says we will do the genetic test to see if I can take that. Thanks for the info. I also get the magazine Ongology Nurse Advisor oncologynurseadvisor.com/ and I like that to help me stay aware of the latest.
Thanks. I think when I asked my doc, that news hadn't come out yet. I think I will broach it again. Now I am NED but on carbo gemzar and avastin for 9 more months and then we will see. My second opinion doc told me it would be unlikely not to come back. I still haven't figured out if I could have a whole year before it comes back... or basically how to regulate it. Thanks for the response!
I don't have BRCA so my doctor says parp won't work for me. Well, he says it's better that I don't have that gene. I guess so but I never understand all these things. Thanks for the info though!
Thanks for this great info Margie! I feel like I am getting such great info here now! This means so much to me!
As far as an 8 number... It's my understanding that everyone just has their normal--well, if the CA 125 diagnosis works. Mine normal way 5.8 so we are trying to get there I guess. But I will talk to the Doc Tuesday and I have a CT scan March 2.
I will ask about these. He says there are about 20, so maybe I shouldn't be panicked. No parp inhibitors also since I don't have BRCA. Someone said I might be platinum resistant. That scared me because it lessens my my available chemos. I guess this isn't platinum. There is also the issue about the test I took which says which chemo is best for my genes. Gemzar was the top.
all the same medications your taking avastin has helped and I was getting side affects but all meds have this problems. I took avastin alone I seemy doctor Jan 3 for results of scan. With medical advancements new meds constantly come on the market. It has become a way of life learning how to
Live with dreadful decease. Sharing with the support group helps me get
Thanks so much! I was also worried that I had two chemos that didn't work. I will think of you on January 3rd. I will post again to see if the Avastin works. Thanks for writing. I really appreciate it.
malka210, I took Avastin Thursday, and staying on the Carbo Gemzar. Oddly my CA-125 went down... It had stayed the same, then went up two points, then when we decided it wasn't working, it just went down...before Avastin.
My doc and reading here got me worried about side effects like bleeding, but that didn't happen at all so far. Also the nurse said Carbo Gemzar is a hard one. I hadn't heard that before.
Meanwhile.... it seems like for the last 2 weeks I got nauseas and just couldn't cure it. I tried every natural remedy and each new drug they prescribed. Something fixed it yesterday. (My doc was confused and of course there is a concern about bowel obstructions.) My chemo was Thursday and I feel pretty much okay today... Next we are going to to a scan. I have a Hawaii vacation next week too.
My CA125 runs low, but my doc says it's normal. Now I am at 8.2. I was down to 7.5 My normal in remission was 5.8 last year.
I got very miserable when I was nauseous and when it lifted, I remembered the emotional roller coaster, but one thing I forgot is how happy I can feel when the bad stuff abates or when I get good news.
Rso it does kill cancer cells!!! I started this before my chemo and my numbers dropped!!! I continued with my chemo till end and I am continuing with the oil.my counts are in the NEGATIVES!!!
Oh now I am seeing this better. It's very confusing how a lay person can navigate issues around CBD and THC. After using it on and off for 2 years, just with RSO in mind, I am overwhelmed. I need to come back to it in my mind and figure out what I think. I never used it for symptoms...
I need to talk to a doctor about it. There are very few who deal with RSO or possible adverse effects. I talked to one who also had the same cancer just recently, but wasn't able to stay in touch. I have forms for a California doctor who will answer my questions. Too much to do.
Thanks Mamaw1. Yup I do Kind caps CBD 2:1. When I was more nauseous it didn't help I guess. But now it's great. I tried other CBD and this makes me feel the best, not high, but a little uppy and pleasant. I can't figure out if the problem went away because I am using peppermint tea and CBD and metoclopramide now. But I think it kind of went away. I will stop taking the metoclopramide and tea soon to test it. I actually tried Rick Simpson oil process last year. But this year I am modifying it Thanks again! I am very interested in any info about people using these things...
Thanks so much Cynthia! I appreciate feedback so much. Not cooking CBD? I think you meant that. I take it sublingually. A doctor and others have been telling me that. The CBD 2:1 pills are the best. I also have some super strong oil for the sublingual CBD 3:1. The pills I just take like pills. Is that what you mean? What kind of CBD do you take?
I think maybe the problem is abating on it's own...a little...it isn't very annoying and it goes away a lot.
Cynthia, how many grams per day were you taking. I got up to 1/2 gram, but that was of THC, not just oil. The RSO says a gram but someone told me it's about the THC, so a gram means nothing unless you know how much THC is in it. The latest stuff I have is stronger than any I have tried. I do CBD in the days and indica at night... I have been through a lot with this stuff, you can imagine, first, the price OMG, then I used it in rectal suppositories, then the doctor and others suggest it doesn't work that way without processing. At least I didn't get high. So now I am back to wrestling with the high.
Me, too! I was so happy on the oil! Then, I woke up one morning with the most horrible pain in the solar plexus, which my docs, along with blood tests and a swollen pancreas, diagnosed my condition. Every time I try to take CBD oil, it goes into horrible spasms. Since testing of CBD oil is illegal, we read up on some Turkish studies that rarely people develop CBD oil autoimmune pancreatitis. It's decided through biopsy. The resins from the oil get stuck on the pancreas. I quit the CBD oil, and my pain disappeared.
Well, I thought, after 1 month, that I could try CBD again. 1/2 hour later, I was in pain again.
I had nausea and Ativan didn't help. I take tramadol for my mood actually. I don't know if it helped nausea. I had a few weeks of it, then it went away. But now I am just reeling from bad news that my CA 125 went up 3 points (6.8 to 7.2) during chemo. I know people here say that 3 points isn't relevant but I don't think that's right based on what's been happening to my progression this last 6 months. I will find out tomorrow when I can call my doc.
How did you take the CBD oil? You know it's sad that we have to struggle with this. I have issues with CBD, in that all the stuff I take makes me a bit hungry and slightly anxious... well, maybe not anxious, just too energetic to sleep. I started at 309 pounds then lost about 120 pounds, so there I was trying to lose weight while on chemo, and I had to work against the cannabis stuff. Plus of course, how can we really know it works, because a person has to have time to read all the materials, and with all the trauma and anxiety, it's hard to learn that much. Ultimately I used rectal suppositories... which now I hear it's not absorbed that way.
In California you can test your CBD oil, and I assume the place I get it from is honest, They test for all sorts of things. I always heard before that I was supposed to have high THC, and my guide said THC:CBD 4:1. But she is the one who also told me that it was a waste to use it in suppositories. Despite that, I think I might go back to that. That does scare me about the pancreatitis though! I take some nice CBD pills 2:1 CBD to THC.
I have a friend who provides it to me at no cost. Not enough for the Rick Simpson protocol...about1/4 as much. I am in a bad place with my chemos which aren't working, so I am trying to figure out what I can do to help all this besides what I do already... which is everything from pure foods, to lots of exercise (Nia dancing), meditation and supplements. My main goal is to figure out how not to feel sad and anxious... to be at peace and both fight cancer and accept my path... not easy!
Thanks for writing about the CBD. I will look around about the pancreas issue. I never even heard it before. Thanks!
I was using 50:1 CBD:THC. Very calming! It's called "Relief" by ETHOS. They have a night time one called "Beauty Sleep". It is 4:2:1;THC,CBD,CBN. It knocked me out! Each bottle has 20 servings: one dropper full sublingual. It's legal where I live; with a medical marijuana liscense you get a 25% discount. So they cost me $25 each, with my 15% senior discount added on, plus 10% "customer loyalty discount. Otherwise, your looking at $50 each.
Oh! Yes I am in California. I will look for the sleep one. So far nothing has worked. I heard CBN works and tried it. Not sure if it worked. Also, what about suppositories? Doesn't that bypass the pancreas?
This new stuff is so strong that it's about what I take, every night, then CBD in the daytime (not much high in Kind Caps CBD, very pleasant). I just got some other CBD but it wasn't as good.
I tell the providers I want RSO oil and this is what they give me, but I am still not sure what it is. My last provider was wamm.org and they gave me great guidance. I guess the project for me is to find a good guide... and I want an MD type of medical doctor. This is all so hard with all the other doctors....
Actually the provider referred me to a MD who deals with cannabis cancer treatment, but I have been too stressed to get the forms done. It's on my list, plus I have a social worker to help me... I have a hard time with the high. Yesterday I took it at midnight and it lasted 18 hours. That is rare...usually 8 hours.
How do you manage with it? It sounds like a great program of a few drops every few days. Thanks for sharing and chatting
Carolleigh, I’ve been taking it for just over 60 days, will continue even when I restart chemo...I’m keeping the faith that I’ll see results! Wishing the best for you too xxx
I am very interested in that...I try to take it but I am overweight and have a hunger issue. I try to take at least 10mg CBD a day...I would like to take more... There is a doctor who will advise me, but they have all these papers for me to fill out... too much to do.
Also I tried it once for sleep, but I don't recall if it worked. Even the strongest indica keeps me awake. I have 2 cannabis problems, hunger and awake-y-ness.
Good to hear! I think I might go back to the suppositories. But 1 gram a day? I think I aimed for 1/2 gram but maybe less. I joined your journey facebook and instragram but only glanced so far. Will look!
RSO is high THC, so I know the CBD doesn't really fit the protocol exactly, but there is THC in my CBD, so it adds up. THC RSO is good for night for me. But how many grams do you take? I am trying to figure out about taking less than a whole gram which can cost $1000 a month or so. 1/2 gram of actual THC has been recommended to me. I appreciate an info or links. Thanks soooo much for chatting with me, Cynthia. I feel kinda isolated, although I am also on most of the facebook Cannabis and Cancer groups. Thanks!!
Every time I used the oil, my pancreas went into painful spasms. A month off of the oil, no pain. Tried the oil, painful spasms in pancreas. My pancreas has been swollen since the first attack in December. I can eat pizza with no pain, but CBD oil-no more.
Oh ! just saw this one, Sarah. Yes, I would like to soon. I'll look more at your materials first. I collected lots of stuff, but I think I haven't figured out how to make it all completely public (though I tried if you want I can joined you to it. ) dropbox.com/home/**Cancer%2...
I am on Gemzar and Cisplatin. It works better than when I was on carbo/TAXOL. It has more side effects than Carbo but is not too bad. I had developed an allergy to the Carbo after 9 treatments. So consider asking your doctor about Cisplatin. I think it might be good to try the Avastin, though. I know someone who is on it and it is working well for them.
I am on the Gemzar/cisplatin protocol every two weeks as well. I had my second infusion yesterday.
For a year I was on Avastin and Lynparza unfortunately it stoped working my Ca125 went up to 296. The PET scan showed a recurrence.
My Oncologist/Gynecologist sent me to MDA in Houston to see if I could qualify for a trial. I was told I was still considered Platinum sensitive and the trial was only for platinum resistant patients. They recommend the Gemzar/ Cisplatin protocol as well. I will do three rounds (6 infusions) if it is working than three more month and then another PARP. If it is not working then back to MDA for the trial. I get another CA 125
Interesting. This regimen got my CA125 into the normal range. They recommended I stay on it for a total of 12 treatments (had my 9th treatment yesterday) but with a reduced dose of Cisplatin (due to my complaints about its side effects). Then they may want me to stay on gemzar only. I think the reason for staying in treatment even though my CA125 is normal is that it took so long for it to get to normal (a year). Good luck to you.
Thanks for replying. I hadn't seen this. Well, with Carbo Gemzar and Avastin my CA 125 went down to 6.9 but last week went up to 7.2. I am very nervous. My doctor said the Avastin would make the Carbo Gemzar work. So each time I add or change a chemo thing, it goes down for a while, then goes up. I know those are low numbers but it's more about the individual's numbers (so I hear). You say it took a year, but I also wonder did it ever go up while you were in the process? Thanks for answering if you see this!
Hi Carolleigh, Sounds like a roller coaster. Sorry for all your anxiety but I'm glad your CA125 numbers are so low. I don't think my numbers went up while in treatment but their decrease slowed down a lot. One doc mentioned she thought they might have started to go up before I discontinued carbo/taxol but not sure. I had to stop due to an allergic reaction. My CA125 went up while I was on a break from treatment while we decided what to do next, then went to normal on the new regimen. My next CA125 is in a few days so we'll see how I am doing. I know someone on Avastin who is doing well on it and I hope it works well for you, too. Best to you. Naomi
Thanks so much! I appreciate the reply and good wishes so much. It means a lot to me that someone reaches out to me and tells me about their journey, so thanks very very much. Below are just more notes about my process. I guess it helps me to write about my experience.
Yes, it has been an emotional roller coaster, but now I feel better. I vowed not to get upset next time something negative happens. I took a Tramadol and also went to therapy swimming (very warm water) and I exercised a lot and I feel quite brave now. Not scared or depressed. I called the help line in this Share Ovarian Cancer support, and got a call back- didn't connect yet. My mood improved a lot. I have a pretty okay time with chemo too, no fatigue and minimal side effects since I overcame the queasiness.
Last time my doctor said maybe chemo, maybe operation, when I asked him about what we can do (since the chemos have been stopping working each time.)
I decided to use this challenge to get more focused on some of the things I am supposed to do in my life... like getting my papers in order. I have a huge list of things to do and I am pretty sure I will live long enough to get them done if I stop procrastinating I want to learn to have the best healthy attitude more than anything.
I think I need more information about how this journey goes. I think I need to figure out how to know what to possibly expect...without getting scared about what could go wrong. I hope I can achieve that balance. Before I just didn't want to know.
Thanks again, so much, for your warm words. I hope your treatment works well and will look back in a few days if you post about it. Thanks!
Carolleigh, I love this! You sound like me. I want to try and learn to brush the Cancer aside and just get on with living my life ❤️ but agree it’d be nice to know what to expect as that takes some fear out of it xxx
Thanks for the sweet words!!! Yes I am eager to look at your pages. I was diagnosed December 2015. I am 67. I am mostly trying to work on my mental attitude. For some reason all my normal obsessiveness is turning into health obsessiveness. Losing 120 pounds was a feat I never ever ever could have done and tried my whole life.
Nope. My doc said it's for BRCA people and I am negative. Do you think I should keep looking at that? Maybe he is wrong. Avastin sounds like it does something about blood supply. Maybe I need more of it? Maybe I am platinum reisistant. I don't know. But I can call him Tuesday. I am trying not to have anxiety. I don't drink (even a glass of wine) and especially now that I am being so careful, but I had 2 glasses of wine yesterday and felt better, even happy. I won't do it again though. I am going to dance class now and that makes me feel better. Thanks for asking!
Avastin does stop the blood supply to tumours but having said that I had Avastin right from the word go but it didn’t work for me as my count continued to go up 🤷🏼♀️
My CA 125 goes down when I start all this stuff, (Doxil, Carbo Gemzar, the Carbo Gemzar/Avastin) then it goes up. Once my doc said I could have radiation or surgery. Another time he said surgery doesn't work for where it is. I have a CT scan March 2.
How is Topotecan? I will look it up. Is this related to platinum resistance? Do you lose your hair? I see you can take a pill. Do you? Are you having many side effects?
Topotecan was given in an I've bag. It had nausea and all the typical blood side effects, but the real big one was depression. The Olaparib comes in pill form. I must fast for 2 hrs before and after taking them, twice a day. Pain and nausea are the main side effects. Some days I actually feel normal!!😀
I can't not eat for 4 hours twice a day. I guess I could but that would be like me running a marathon every day, which I probably could (except for my joints ) but it sounds hard. I snack all the time. I was 309 pounds, now 194 through lots of hard work.
I am worried about losing my hair because I didn't tell my 95 year old mom that the cancer came back. Otherwise I am not worried about that. I actually like people knowing and when people acknowledge it. I think maybe t's become an identity for me now. I think that can be positive. I am so sorry to hear about your oil saga. What a challenge to go so far as to using it well and then have that option cut off. But is it all Cannabis things? What about THC or THC-A or CBN or things like that?
But really in this journey for me it's been a roller coaster of hope and disappointment. I was the kind of person who hated drama in my life. I even gave up on love a long time ago. And now to be in a situation where that is just part of the territory.
Thanks for being here, communicating to help folks! It does help to connect a little with people on such a close path. I appreciate your time and attention. Thanks!
I see about the pancreas. I googled and found this: hindawi.com/journals/criem/... I am still not sure if it's CBD or other things also in cannabis. It's good to know. I wish they could do more experiments so we could know more about all this. I appreciate the info.
Thank you, Carol! You are so kind to relay these studies to me; I will relay them to my gastroenterologist! My ca125 is back to it's normal points again☺️; I feel pretty sick, but your message really cheered me up, especially the part about peripancreatic fluids; my oncologist told me he thought he felt ascites. He forgot my ultrasound came back negative for ascites. But, he detected fluid during my examination.
Next week i have an MRI and an endoscopy. Then 4 weeks a CT scan. My insurance is so persnickety.
I'm glad you are feeling more hopeful about your situation! Please keep me posted.
Thanks soooo much. I am so glad. I was hoping you wouldn't mind me looking and googling it. I did the right thing. I am glad to be of help. This gives me more resolve to actually get my papers in so I can talk to the cannabis cancer doctor too.
Yes! Remember to bring up the liver ensyme question (was it P450?); that might interfere with processing chemo, resulting in elevated levels of chemo in the blood ( same as grapefruit does).
Okay!!! Great info! Thanks! If I get to it. OMG sooo overwhelmed. That's why I have been procrastinating with this. I go to the doc today for extra CA 125 test. 2-3 hours to get there and home today. Yuck! It's in San Francisco like me, but all the way on the other side of town. Just complaining
FYI, I got to talk to my doc and he says .3 points isn't enough to panic about and that we will try more avastin or something before we switch. I will get an extra CA 125 test this week too. He also assumed me there are lots of options for me. I feel better. Thanks everyone!
Thanks all. I feel better about everything. My doc finally explained that often the Avastin is just like that, like the numbers go up and down a little...not like the Carbo-taxol I took last time. I guess that's what he said.
Then I had a scan today. Came home to a happy email "Just got your scan report, and the news is GREAT. You are almost in total remission. Most of the disease seen in July is GONE. There is just one little “pesky” lymph node that is 75% smaller (not totally gone), but I’m certain that it is on the way out. Congratulations. Have a great weekend. "
I have just completed six months of docile carboplatin and Avastin. Doxil and carboplatin once a month. Avastin twice a month. No side effects with avastin whatsoever. Feel fine directly after infusion. Safe to use long term as 8 will be going on parp inhibitor and will continue with avastin as well. Getting treatment from city of hope
Ah! Avastin gives me a few side effects. I think it's the Avastin, shortness of breath (minor) and sometimes (once a month or every other month) my ears get pink and I get a rash. Maybe it's something else. I am NED and now doing 9 more months on this every other week. I would be so happy if it was every three weeks. I feel quite good re energy and most other things. The breathing might be getting much better. I think I had some knee pain with that Neulasta shot. It seems to be going away. I am stage 4 uterine that 'acts like ovarian'. I am trying to figure out how to do the most to sustain myself through years of chemo. Luckily I fee pretty great most of the time.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I want to learn to have the best healthy attitude more than anything.
Stage IV cancer recurrence 
3rd recurrence with stage IIIc
Carboplatin reactions on 6th session
Ovarian Cancer stage 3c since Oct.'15
