Hi All, I had OC in April, 2017. Surgery, full hysterectomy, then 6 rounds of tough chemo. I had stage 1c tumor w/ microscopic touching. Last chemo 9-2017. All of my CA-125 tests are around 9-12. May 2020, my CA-125 rose to 29.4. I panicked! Per the advice of my doctors, I waited 4 weeks and did the CA-125 again two days ago. It rose again to 50.4. I have a CT scan next week. The thought of a recurrence ... I am scared to death. I can't rise to the occasion. I am overwhelmed with grief. I can hardly breathe. I am so scared I am unable to function. It's only been 2.5 years and I had stage 1c. I don't know what to do. The thought of the chemo again just makes me sick. I don't want to die but I am without words as to how this feels. I welcome your thoughts as to how to process this.
Possible Recurrence - Beyond scared - SHARE Ovarian Can...
Possible Recurrence - Beyond scared
CA 125 levels rise for a number of different reasons. I know it's hard but try to think positive. It could be inflammation that is making your levels rise. It's not necessarily a reoccurence. Try some deep breathing exercises when your mind starts racing with negative thoughts. I hope this helps. All the best
Hi so really sorry, it’s no good saying don’t worry as I would be just the same. I too was diagnosed stage 1c2 in July 2016 and so far still all clear. The only thing I will say is CA 125 can rise for other reasons and they are on to it straight away with an urgent scan. it’s even more scary I think because of this strange time we are all living in, when you can’t rush to friends for a cry and a hug. Keep busy whilst you wait, have faith in the team. Will be thinking of you. xx
Thank you so much for taking time out of your day to reply. I appreciate it and it helps. BTW, so happy you are still clear. Congratulations and enjoy life. Yvonne.
My goodness, I recognise these very emotions. After two years in remission and getting my life back in order my CA125 starts to rise. I remember the cold feeling of fright, then grief, then anger that after all I had been through, this horrible disease might be back again. I think we all go though this process, perhaps even need to, before we can move forward. I found it difficult to function for several days, just seemed to be walking round in a fog of emotions but gradually I started doing things to keep myself distracted; things I enjoyed that made me feel good and calmer, sometimes surprisingly small things. I got to the point where I was thinking about all the things I had to live and fight for and if the cancer was back I was not going to give up. Unfortunately for me it has come back and I am shortly starting chemo. I hated the thought of chemo again but I will do what it takes. I am feeling very positive at the moment. However, the others are right, there are other reasons why your CA125 might rise. Have your CT scan which should give you a clearer picture and it might be something completely unrelated to cancer. I sometimes think half the worry is just not knowing. Sending you lots of warm thoughts and wishes. We are all so much stronger than we realise. You will find the strength whatever happens. 🤗 Jackie x
P S Please keep in touch and let us know how you are getting on.
Thank you. I can tell from your email that, you to, felt the way I do. I am sorry it's back. You sound like you have a lot of strength. I did the first time, but this time if it's back, I feel very scared because the chemo was sooo hard. Thanks for taking time out of your day for me. Please let me know how you are doing and I will do the same. Yvonne xo
Which chemo did you have first time round. I was offered carb/taxol but only had the single carbo. My oncologist was happy with that. The only side effect I had was tiredness. x
Yep, l know exactly where you are coming from with the first treatment. I was on carbo/taxol but the paclitaxol was stopped after fourth treatment as the neuropathy it caused in my hands and feet was getting worse. Unfortunately it has not gone. I had to have steroids adjusted as they made me anxious at night and I wasn't sleeping. They made me so jittery. As far as I know I tolerated the carboplatin well. Thing I noted is that the effect is cumulative. The two/three weeks after my last treatment were a nightmare. I could barely walk but suddenly I turned a corner and felt so much better. It was almost like I had never had chemo. My energy levels soared. Definitely got my mojo back. I am hoping this combination will be better, at least not worse. Unless I have an adverse reaction I know it's doable. At least I have some idea how to pace myself this time. I count my blessings every day - I still have so much to be grateful for despite the cancer. However I sincerely hope you will not have to do this a second time. Jackie x
Not sure if this will help but it's worth a try. My first chemo I had carbo and paclitaxol too. I went into chemo with a long dress, fairly thin, short sleeves and sandals. My hands and feet were freezing the entire time. I put a blanket on my lap but always kept my hands and feet cold. I thought of the cold cap technology and thought it might work for the neuropathy. Well it did. I am not sure that is what did it but it worked. I wish I had your spirit right now. Thanks for reaching out. Please let me know how it goes. Yvonne
This is weird. I used the cold cap too but stopped during session four as my hair still got very thin and it was "burning" the top of my scalp. I've never heard of the cold cap helping with neuropathy _ didn't work in my case. ☹️ As my hair was starting to look really patchy I had it shaved close to my scalp and I'm told I rocked the look. It was quite liberating especially during the hot summer of 2018. With paclitaxol there is about 50% chance of getting neuropathy and further 50% chance that one will be left with it to a greater or lesser degree. Seems I drew the short straw both times. Still I don't let it hold me back. How well I remember the cold feet and hands. My solution was to take two of my own fleece blankets in - the hospital blankets were useless. Your comments do help in that I know I wasn't the only one going through this and coming out the other side. Jackie x
I am so sorry you are having to go through the fear of uncertainty. Even though my numbers are steady right now, I still have that fear lurking in the back of my mind. It seems hard to think of a time when we will ever really free of the unknown. I will echo what has already been said. CA125 can fluctuate for many reasons, and sometimes, it isn't even a good indicator. For me, it never rose above 124, even at diagnosis of Stage 3b. Are you suffering from allergies? Is your body fighting something else? Depending on your age, your body may lean toward inflammation for many reasons.
You are in my thoughts and prayers. Whatever the news is, you will take it in, feel it, process it, ask for guidance, and do whatever you need to do, one day at a time. You will find your strength if that's what is necessary, or you will find even greater gratitude and relief. No matter the result, you will receive whatever you need to put one foot in front of the other and keep moving forward. There is no other option. Blessings to you. Please let us know how you make out.
You are so right about CA 125 not always being a good indicator. I was 130 at stage 3c and now at recurrence it was just 30 three weeks ago and in no way reflects that I have an abdominal mass and cancer has metastasised to other abdominal organs. Good job I listened to my body and pushed for an investigation. I hope you continue to do well. Jackie x
Your numbers were at 30 and it metastasised to other abdominal organs and you have an abdominal mass? Are you having surgery? What did your doctor say?
In the scan report the radiologists impression was: extensive intra-abdominal disease recurrence. I think that might be a conservative summary. Basically it's everywhere. Apart from previously mentioned mass which is about 6 cm, it's on my spleen, liver and stoma and I have small nodules all over my abdominal lining and close to my kidneys. I have recurrence of carcinosarcoma of ovarian origin which is a very rare and aggressive cancer. No-one knows a lot about this cancer but the quick progression is not much of a surprise. The areas on my spleen and liver were not large and apparently "on" is better than "in". There is also suspected disease to the virginal vault and stump left from my hysterectomy. To be honest I am not sure a surgeon would know where to start at the moment, there is too much. As much of the cancer is still quite small we are hoping the chemo will significantly shrink or clear it. There may be surgery down the line if we can't eradicate the nodules from my stoma but other then that we are not looking at surgery for the moment but hoping chemo will manage it for now. I am sorry this might seem a little jumbled - it's been a long day. Thanks for your interest band I hope you are doing well during these uncertain times. 🤗 Jackie
That is a difficult reality to face. Sometimes it's just about getting to the next new therapy. I pray the chemo does exactly what you need it to do, and that you are able to get into that progression-free zone soon.
Thank you so much. Prayers is what I need. I don't feel connected this time, if it's back, like I did the first time. Funny you should say gratitude...I looked for the gifts that I would not have received otherwise the first time. Again, I am lacking that now. Thank you for your insightful words and taking time out of your day for me. I will keep you abreast. Yvonne. xo
Hi Yvonne, 11. 30 pm and can't sleep. Oh well. Sorry if the end of my last post sounded a little strange; as though I hadn't replied to you before. I think I thought I was replying to someone else. As I said it's been a long day. I almost posted one reply to myself, lol🙄
Sleep tight. My thoughts are with you. Wish we could chat over coffee but virtual support will have to do. No need to apologize. Y
Hi - I am sorry you are going through such uncertainty. Of course you will have a better idea of what to do after your CT scan. I have some information that may be useful to you, in case you need it. I have 3C low-grade ovarian cancer, first diagnosed in september 2015. After surgery, followed by 6 carbo-Tax infusions (nov 2015 - march 2016), it re-appeared in 2017, some 8 months after my last infusion. But instead of chemotherapy again I have been on a regime (off-label) of Kisqali and Letrozole. Almost 3 years later, I am tolerating it quite well, but i have lost a lot of my hair. There are many side effects, you never know which ones will affect you. The retail rice is prohibitive, however, there are programs available to radically reduce the cost, or even not to be charged anything. You would have to discuss all of this with your oncologist, who can make a case (fight) for you to your insurance company. Just to let you know that you have options, should you need them. We are all stronger than we think, and if you let your family and friends help you, it will reinforce that strength. All good wishes to you! 🎈M.
It definitely is a roller coaster ride and I've been on it for over 5 years now. If you think of it in terms of a chronic disease rather than I'm curing it and now it came back it might give you a little more equilibrium. Not to minimize the fear that you're going through right now, but you will get through this. If you have integrative support treatment system in your area please take advantage of it. Acupuncture, massage, and Qi Gong really help me deal with not only the side effects, but with peace of mind. I do attend a zoom Qi Gong class that is free and if you're interested I can give you the information. You've been through this once and it might be a good idea to let your doctors know how hard it was the first time and perhaps you can start with a little lower dosage of whatever you are given to fight this. I've been on taxotere for 2 + years and now. I'm taking avastin along with it since my last reoccurrence and it's working really well. Sending positive energy your way.
Thank you. What stage OC do you have? What has your journey been like ? Taxotere is stronger than paclitaxil. My heart goes out to you but thank you for the wonderful advice. Y xo
My doctor doesn't give me stages. At one point when I had a horrible doctor in the beginning I was told stage four, but when I went to have surgery for my total hysterectomy the surgeon found nothing. That was after taking carboplatin and taxol. I had a rough start with horrible doctors and I don't want to scare you with it all. Eventually found a wonderful doctor and continue to see my gonological oncologist regularly. After my original chemo regime and surgery I was off of everything for about a year when my counts started going up and then I went to my new doctor and did gemzar and cisplatin. I was on that about 10 months when I had an anaphylactic reaction to the cisplatin and had to go off of it.I went through all the fears and roller coaster rides that you're now going through. My next drug was the Julia which is a pill that you take at home which lasted about 4 months before I had an allergic reaction to that. It really was not any easier on my system than traditional chemo. It just saved me from having to sit in the chemo room. After some ups and downs and adjustments of dosages which I'm luckily able to negotiate with the doctor to try low dosages and work my way up to higher dosages I am currently on a low dose of taxotere and avastin. I started with every 3, them every 4 weeksweeks and I'm now switching to every 5 weeks. There were some bumps in there where I had to go every 2 weeks and we just played with dosages until we were able to find one that works without making my quality of life miserable. All I can say is to be kind to yourself and accept help that's offered to you. Sleep when you want, eat whatever you can whenever you can. I think my biggest savior was drinking at least 9 glasses of water a day and 10 on chemo days and for about 4 days afterwards. I wish someone had told me that in the beginning. It really did and does make a difference for me. Take care
I was interested in your advice about 9 glasses of water a day during chemo and 10 on treatment day. My recurrence is sufficiently advanced that I am already feeling that I get dehydrated quicker than usual, so I upped the water intake despite the moderate urinary incontinence I was left with after my surgery. I am about to start chemo again, tomorrow. I will definitely be keeping up my fluid intake no matter how many times I have to trundle my drip stand to and from the toilet. At least I won't be walking about in my space helmet (cold cap paraphernalia) this time. Sounds like you have a wonderful doctor - NHS or are you perhaps in the USA? Wishing you all the best. Jackie
I'm in the San Fernando Valley, California. Yes I'm up every 3 hours using the restroom for the first few days after chemo and then I graduate every 4 hours. If you want the information for the zoom Qi Gong I can give that to you as well. This too shall pass. Hang in there.
Thanks for your reply. My guess was right then. I live in a village in Staffordshire, UK. Yes the toilet trips are interminable. I havent Googled yet so don't know what Qi Gong is - sound like something out of Star Wars. Seriously I suppose it must be something like Tai Chi which is something else I have not tried. I would be happy to receive a link or info if you don't have that. My cancer is terminal but I haven't thrown in the towel yet by any means. Let the battle begin - go Teal Warriors. Jackie x
Sounds like a wonderful place to live. Don't listen to the word terminal, did she go on will help you to deal with that. I'm giving you two links with the top one being for everyone who's interested in energy work which is along the lines of Tai chi. The second one is specifically for cancer patients going through chemo or recovering from it. The cancer one helps you to rejuvenate while the other teaches you healing energy methods. I do both along with acupuncture. These are Los Angeles times and there are people from all over that attend them. Hope to see you there.
Zoom
WED. Morning SELF HEALING QIGONG
8am - 9am
Join Zoom Meeting
zoom.us/j/323046756?pwd=WjJ...
Meeting ID: 323 046 756
Password: 035812
Qigong Meditations for Cancer Support TUES-Zoom Meeting
Time: 3pm Tuesday
Join Zoom Meeting
Meeting ID: 885 4887 1319
Thanks for the info. I forgot we are 8 hours ahead of Los Angeles so the first one will be about 4.00 pm for me which is doable but the second one is at 11.00 pm which is rather late. Still I'll look for something similar in the UK. I take it the Self Healing QiGong is every Wednesday, no specific dates. I am starting chemo tomorrow afternoon so I won't be at home for that session. I am starting with carbo/caelyx every four weeks for six sessions so I should be able to look in on other Wednesdays. The one for people having chemo would have been particularly useful but I think I might be a little tired by 11 at night. As I said, I'll do some research and see what I can find. Take care. Jackie
I’m so sorry to hear that. Worry and stress alone can send up your ca125 as it causes inflammation.
My way of coping is staying in the present moment as much as I can and trying to feel in control. I read Jane McLelland’s book How to Starve Cancer and am taking the protocol there which my onc and GP have supported as much as he can. Trials are being done on the various Off label drugs and it’s a cocktail approach to cut off all the paths that feed the cancer cells. Many oncologists are prescribing these now ( the open minded ones). It’s really worth reading the book and discussing it with your onc. It’s a lot to take in but there is a helpful Facebook group too which is supportive.
Wishing you the very best
Alex x
I went through similar feelings...my CA125 is rising, and the last gyno-onc appt, he said "I feel something there", you have to have a CT scan stat. (Fortunately, nothing showed up) The point is, I hate hate hated the chemo... 3-5 days of feeling relatively good before the next infusion! It is a very difficult road. My first reaction was the same as yours...I don't want to die but I can't do chemo again. I can't tell you how to feel or how to process it, as I don't know myself. It just really sucks. The only thing that has been helpful to me has been to "put it in a box and put the box in the closet", until I have the energy/strength to deal with it. Maybe not the healthiest way, but the only way I can do it. One of the things that I dread is my family saying "You have to do it again, don't you want to live?!" .... no one understands the impact of the chemo on us. Anyway, I think that I understand what you are feeling, and you aren't alone . I hope that yours has not and does not return. But it is scary, and it is a huge roller-coaster of emotions. Don't feel weird about that.
Boy do I wish we lived close and we could talk because clearly, you know EXACTLY how I feel. I decided to look for the gifts from when I went through cancer and I looked for things that I could receive from it all. It took everything I had to keep going and yes, I too am beyond scared and I too, have that same box in the closet on the shelf. That is exactly what I have been doing. I really appreciate your response. I find out Wednesday the results from the CT scan. Where are you in your journey? From the bottom of my heart, thank you. Yvonne xo
Yvonne, my thoughts will be with you on Wednesday. I hope that your scan comes back clean! I am glad that my words are something that you can relate to. I love my family and friends very dearly, but sometimes I don't want people to tell me that it will be ok, or 'think positively'...sometimes I just need to be allowed to be a cry baby lol. So find that person you can be a cry baby with, and just cry and pout on those days that you are tired of being positive and brave. 
I was diagnosed in August 2019, had full hysterectomy, same chemo tx as you, along with Avastin. I currently receive an Avastin infusion every 3 weeks as 'maintenance' therapy. I have clear cell, which is very rare, aggressive and difficult to treat.
It is a crazy way to live our lives, but the only thing that I can do to get through it is to let myself feel however I feel at that moment. Try, if you can, to put the fear of more chemo in that box in your closet, until you get your scan results on Wednesday. Fingers crossed for you, and best wishes.
Got my CT scan results today. Bad news. I have a mass in the same place as the first time and it's cancer. I have surgery in July and then probably chemo after that. I can't tell you all the feelings that are going through my head right now. But, thanks for all your kind words. I will keep you informed and I appreciate all of your support.
I had similar feelings but you must go on. You got through chemo the first time, you can get through it again. I start my 2nd round on Monday. We’ll be ok.
Has anyone heard from SDlady since her surgery?
Hey, how are you doing? I assume you are home with family now. Just checking on you.
Where do I go from here?
Ovarian cancer metastasis to liver.
CRAZY WITH CA125
Scared
