I'm new here
My name is Wendi. I have ovarian cancer and am heading into chemo treatment 6x every three weeks for the second time. Will be sure to get a port this time. In 2022 I had HIPEC , complete hysterectomy and underwent chemo. I was clear for almost 2 years. In the last 6 months, my CA 125 has been increasing rapidly. After several CT and pet scans, it seems my cancer has landed and grown from my spleen to my lung. Slowly but quickly because my tumors are mucinous and not easily detectable. Mucinous tumors are a hard catch apparently and seemingly rare although it seems there is much more research in the UK. I trust my oncologists and always understand to ask all questions, do my research and advocate for myself like there is no tomorrow. I'm 52 and I recognize that my life from now on, since I can't be "cured" , is trying to treat it until the treatment stops working or I stop fighting. Choosing to fight for now. It's rough stuff. It's my life pretty much in my own head because this **** is lonely, despite my parents, husband and my amazing daughter that I really would love to be there when she gets a PHD. We shall see. Sorry for the rant. First time here. Feeling emotional. Blessings to all. Thanks for reading and I am super open to any conversation about what you are going through.
Comments
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Hello Wendidarling. I'm not sure if the boards here are active, as it looks as if nobody has responded to either of us. That said, I am so sorry to hear that you are going through such a tough time. I do hope that you keep fighting! I'm not sure if you are a praying person, but the book Christ the Healer is a wonderful read and so comforting. God bless you!
~Molly3 -
Hi Wendidarling, I have endometrial cancer and usually visit that board but posting here to send you some extra love. I understand a bit of what you're feeling. I'm stage IV and fortunate to be in remission but my ca125 numbers have tripled each of the last two checkins, so we'll see what happens.
I'm glad you're already being proactive and have an oncologist you can trust. Have you gotten a second opinion on treatment? I do plan to get one from one of the larger cancer treatment centers if mine does indeed come back. There are so many options and clinical trials that having an extra team look at it may turn up a better option.
Also, are you part of a support group already? This board can be kind of slow, but I've found a support group to be useful for meeting other people who have similar experiences and getting past some of the feelings of isolation (and also for learning about some of the different treatments out there). I see Share has one coming up next week for recurrent ovarian cancer: (They're do groups on Zoom.)
Please keep taking care of yourself. It's normal to worry at times, but it sounds like you also have a lot of good things in your life right now. Sending you an extra hug and encouragement.
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Ok, took me a minute to figure this out. Thank you and blessings to you.
Hi! Thanks for your reply. I'm having a difficult time navigating this site! Der derp and not relevant. Hopefully you see this
I'm sorry to here about you recurrence. It is a lonely place to be but I do have great people around me. I was in remission for 2 years (almost) and all of the tedium about chemo all over again upsets me. The fact that you reached out makes me think, hope and believe that things will get better for you. For us both.
I am getting a port next week. Did or do you have one? My last chemo I didn't and vein collapse was an issue so, electing to go the "don't poke the **** out of me" route . Got a bit nervous when I looked it up because I love my decolletage and now I'll have a visible scar and port for all to see. I'm not vain. I just like wearing sundresses. Fighting for my life is the game to win. And I also love turtle necks. Have you had one and how was it for you. The port, I mean, if you had one and if you didn't, would you do so now?
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wendidarling, I hope they did genetic testing on your cancer. Some cancers respond to the immuneotherapy drugs based on genetic make up. Is it dMMR, pMMR, POLE, p53, etc…
Hugs dear
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Hi @wendidarling - Thank you for the extra bit of positivity. It's hard sometimes watching those numbers go up while still trying to enjoy this good time that I have with no symptoms.
At the infusion center where I went for chemo last year they always use ports, so mine was placed at the same time as my staging surgery. I have even had issues during normal blood draws, so it makes a lot of sense using a port for something like an infusion. I definitely am not one to give any fashion advice and most of the other patients I saw kept theirs covered up too. Maybe you could start a new trend like Nelly did with the bandaid on his cheek.
I was more in the camp of just in general hating the idea of having something implanted in my body, though. I got mine out at the earliest possible opportunity (against the advice of my oncology team). After having it out for a year, half of the scar (where it was both inserted and then removed) has already faded significantly. It was almost to the point where I'd feel more comfortable with being seen in my swimsuit. But if I have to do any type of infusion again, yes, it's definitely worth it for me to get a port installed again.
I hope whichever treatment you get lined up ends up going easier with the port this time around and gets you to a more durable remission. You got this. 💕
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FeeI you. And thanks for bringing it up about how quickly one can worry about a number. I am a number nerd and yet it can still be confusing
All we have is the next day. Sometimes myemotions emotions win the day which can suck. However, dealing with all this can also have surprise days too. It's a " sometimes"way of life for many of us. Best wishes for us all.
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Hi Wendi - I'm Ruth. Don't worry about the rant!! That's what this place is for. You're safe here, and you can unload those feelings any time. This is a very tough battle we're in, emotionally and physically. I know exactly what you mean - this is a lonely journey, and yes - we spend a lot of time thinking imagining… trying to project and get some control over this beast. I've been at this for a year, and the only thing I've figured out is that sometimes the biggest battle I'm fighting is in my head. I can freak out over a result and before I talk to my doctor, I go totally off the deep end. Until I'm not. It's great you've got such a supportive network— me, too. In fact, I never realized how much I'm loved in this world till my friends surrounded me like bubble wrap. That helps, but hey - you and I are the ones actually going through it. You're stronger than you know— and there's so much promise in the research for OC. Just keep going, keep fighting. Women are living longer with this thing than they did years ago. Hang on, dear girl. A day at a time, a week at a time, a month at a time. You can do this. Sending good energy your way—Ruth
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Hi, I'm new to the site, and saw your post. When I was first diagnosed in 2017 I had a port put in and after being in remission for 2 years I decided to have the port removed, I celebrated it as a victory. And then I My cancer reoccurred, so I had a port put back in. So far my cancer has reoccurred two more times and I am glad I had my port. I'm just finishing chemo again and I'm not sure if I'm going on a maintenance drug or not I can't decide. I'm just tired of being sick and tired. Everyone wants me to be strong but sometimes I'm just tired. It's easy to feel alone because unless you're going through it I don't think you really understand what it's like.
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Hi Cllabuhn. Oh, I hear that. Loud and clear. I'm sick of being sick, too, and I've only been at it a year! You've had to go through having the rug pulled out from under you when it returned.. especially after two years. You must have been devastated to need that port again. I hear you, I do. I'm curious, if you don't mind sharing… what were the subsequent treatments, and how were they? I'm platinum resistant, so very quickly had a recurrence and am just finishing up gemcitabine, which I'm finding to be rough. If you'd rather not get into it, believe me I understand.
Ruth
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Regarding a mediport - I didn't have one the first year, a decision I LONG LONG regret. Had to put up with 8 zillion stabs, either for blood, chemo or the contrast for scans. And they always went for my hand or forearm, which hurt. Finally my veins gave out after getting gemcitabine which is particularly rough on the veins. Ended up in ER with blood clots and thrombophlebitis. They asked why don't you have a port? I said I didn't want all the maintenance, and I didn't like the look of it. The nurse was like…. "whaaaat?" When I saw people in the waiting room for chemo, they all had these little tubes coming out of their chest. I thought they went home like that. I didn't realize that was just the port being accessed, and they take that out before you leave. If I knew that a year ago, I wouldn't gotten the port without question. Makes life ALOT easier, and we can all use anything that makes this hellish journey a bit easier.
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Hi Ruth,
You can bet that I was very angry when my cancer returned even though my oncologist said it would. Third time I was on gemcitabine, it was tough but did the job. So far I'm not platinum resistant and have been on a different drug partnered with carboplatin each time. This cancer sucks . I can tell you unfortunately it's been harder each time to recover and no one wants to hear it, so I don't say much. It's funny though because I have a friend who also is struggling with cancer and she sees right through me. We need each other, hang in there because I know someone who has been in remission for 20 years. I'm hoping for at least 2, we'll see. Take care of yourself.
Connie
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Connie, it was so good to hear that gemcitabine worked for you. It's a bear, though. If I were any more debilitated I'd be unconscious, and the mouth sores are no picnic. Just one more round for me. You're right - unless someone has cancer, they really can't "know". Do you have any cancer support groups? Have you heard of Uniteforher.org? It's been a lifeline for me. Stay strong, dear girl. Ruth
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Thank you. I am grateful. And thank you for the information. I'm still learning how to use this site properly. I've sent many responses but they don't seem to stick. I'll get it, eventually. My best wishes for you and all of us. I'm a bit tired today after my port insert. I do have 2 oncologists that monitor me. And have been to others in San Francisco and Stanford so my case is pretty clear, or at least as clear as cancer can be which is, not really... Ever. I sincerely thank you for your response and I am wishing you all the good.
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I just got one yesterday. Minor stuff in the wide world of crazy that is having cancer. I had same problems with vein collapse during my last round. Hoping this next one goes easier without all the pokey poke. I hope you are on a path of wellness for as long as possible.
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You're gonna be a happy girl when they start using it, believe me. WORLDS of difference!! Both hands free, for one. I recommend doing the lidocaine cream, if they gave that to you. It does make a difference. Good luck to you - hang in there!! What a hellish journey we're on…
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Hi Wendidarling,
So sorry that your cancer has returned. I am relatively new here too. Hysterectomy in April and chemo started in June. I debated a port too, but I am a tough stick on a good day, it has made everything easier. I am glad I did it. Sleeping the first few weeks is tough, but once it heals up some, it's not a problem. I am glad to hear that you are fighting and that you advocate. We have to, no one else has as much riding on all decisions. Since the diagnosis on May 20, I feel like I've been getting a PhD in Cancer. I had both Ovarian and Uterine. The CT scan shows nothing there (hopefully, right), and we are doing six rounds of chemo to "clean up" any cells that ruptured loose during surgery. I have just come out of my hell week (the week after infusion) on my third cycle. There is so much the doctors and nurses don't tell you, it's frustrating. I know it's not reasonable to tell every patient all the side effects and what to do about them, but they handed me this huge binder that could specify more and give the treatments. For example, I had wicked leg and bone pain after infusion one. I couldn't get comfortable anywhere and neither Advil nor Tylenol touched it. We called the nurse line- they are great at my hospital, and they recommended Claritin- the allergy medicine. It did wonders- that could have been in the book under pain. It's like they are afraid to give too much information-which is silly because these days with the internet people can get plenty of information, you would think they would want to make sure you had good information. I also discovered through trial and error that heat helps the pain, soak in a tub, heating pad, or in my case the guest bedroom with an electric blanket on high. It's 90 degrees and humid out and I am under the electric blanket.
You are heard and my best wishes go out to you. As I said, I am not very seasoned, but I try to log on and listen. Hell week I mostly sleep, but I always check back in because it helps to talk to others who share our situations.
Beth
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Oh, hell, that's just …. awful. You have to battle TWO cancers??? Beth, I'm so sorry to hear that. This is a long, unpredictable fast moving journey we're on, and you never know what's around the corner. I feel like I'm in raft on a fast moving river. No paddle. Can't get out, can't steer - just on for the ride. And yeah, I had severe bone pain from the chemo. They gave me Dilaudid - that was the only thing that would touch it. But I bet you're seeing your CA125 numbers going down. Mine did, especially following the 3 "clean up" rounds of chemo following surgery. Speaking of… how about THAT?? I am now 8 months post surgery—it took a while to recover from that trauma. Keep coming back here, Beth. We're all here for you. Ruth
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Dear Teal Sisters,
I just heard about a retreat in September in Montana, for OC patients and survivors called Camp Mak-a-Dream. I have signed up. If you are well enough to attend, I recommend spending time with other women who you can relate to and learn from. I am not entirely sure, but I think it maybe free, and they award funds for transport to ladies who need it.
I found it hard to find other OC ladies locally, for more than a year post diagnosis. I then proactively asked my surgeon at a check up, and finally met one other lady. Then through her another. It feels so good, and less frightening when you find others that can actually relate to your OC.
I have now found a local organization in Seattle specific to OC research, with survivors positively turning their remission into working towards advocacy and supporting research into a cure - the one I have been raising funds for... Powell-Drescher Ovarian Cancer Research Foundation. I heard about this particular retreat Camp Mak-a-dream, from a lady at a social gathering they organized.
I hope some of you may be able to go too.
Hugs to all! Xxx
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Ruth,
Thank you. Best to you too. I know what you mean about being on a raft with no power or control. I sometimes feel like the treatment is something that is done to me, not always part of the team. Some of my team is awesome, some are not great communicators. The diagnosis itself takes us by surprise, and then people rush in with tests and treatments, but it seems like too much at times. Don't get me wrong, I know time is precious with cancer and the sooner addressed the better. What people who don't have cancer don't get is we know nothing. Unless you have helped a family member or friend with their cancer, you have no idea what anything means. At least I know I didn't bother to read much about it until I was diagnosed. People who work with cancer patients (like any professionals) have jargon and their own shorthand language and they forget that the newly initiated have no idea what half the words mean. Even with a medical dictionary and looking up every word, the sentences just don't convey any meaning, and I am relatively intelligent. Maybe when I get through all this I will write a translation book for cancer. These forums are a blessing, someone here always seems to have something relevant to share, and at the very least I feel less alone. Best thing is I can read at 3am when the pain is keeping me awake, or any time I feel.
The surgery was a total surprise, and at that point, we weren't even using the c word. At 60 with postmenopausal bleeding, some abnormal cells in a biopsy, and a cyst on an ovary the plan was to get rid of the problem by removing anything that could be a problem later. It wasn't until weeks later that the pathology report came back with the two cancers. I was still dealing with incisions, and moving tenderly when I was all of a sudden hearing about chemo. The surgery was a big deal, but somehow got almost forgotten on the charge to treat the cancers. It's like everyone forgot there was a body attached to the process.
Beth
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