OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Let's get started! Come and introduce yourself
Comments
-
@itzwhatever i am so sorry you are going through this. Especially since you are so young! But you will get through it. Get plenty of rest. We are all here to support you. I will keep you in my prayers.
0 -
@itzwhatever I’m so very sorry you’re going through this at such a young age. I was diagnosed last October and have had surgery and 5 rounds of frontline treatment and am now in a trial in Toronto at PMH.
I spent the week there for tests, meetings and chemotherapy but they cancelled chemo because I had been feeling super tired with little appetite for the past 12 days and I am so consipated the X-rays show there’s no more room! They wanted to admit me for a few days, which feels like something I want to avoid! Now that I’m home, have been following the protocol of 1 serving of Restorolax and 2 Senekot pills every 6 hours until I poop. I did a suppository last night which did nothing. Today I did an enema which got things started, but not much. Now I’m wondering if I should have let them check me into Princess Margaret Hospital! Drinking plenty of Gatorade hoping for more movement soon.Take care everyone! 💖
2 -
itzwhatever the first few treatments of chemotherapy are always the most daunting because one doesn’t know what to expect. How are you feeling today, Day 3? The port is definitely a personal choice. It wasn’t an option for me. I had IV infusions for either chemo/immunotherapy every 3 weeks for 11 months. If you have too much tingling in feet/hands then you need to inform your oncologist and they may reduce the paclitaxel. At least that is what they did for me. What have you decided about your hair? I had my long hair cut short two weeks before chemotherapy started. Once the chemotherapy started, and I noticed a little bit of hair starting to fall out about two weeks after the initial treatment. So I had my head shaved. I just didn’t want to deal with the hair nonsense. It was funny because my head felt quite prickly like the sharp beard of a man, so I had to put down a soft blanket on my pillow so my head didn’t hurt! For me, days 3-6 were brutal, and I started to feel a bit stronger by days 8-9. I found it helpful to keep track of my symptoms for each of the days, and I wrote down what meds I was taking as well. I started taking dexamethasone 24 and 12 hours prior to the infusion and I had to take some big pill an hour before the infusion. The nurses even started the chemotherapy they gave me IV Benadryl, and something called Olanzapine. My appetite was good. I never had any nausea. What you may experience is some constipation, frequent urination, and some abdominal bloating. For me, my bladder was particularly unhappy, and sometimes I was incontinent in the middle of the night when I tried to get to the bathroom, so I would end up wearing a pad to bed. Of course everyone is different, but I can only use my own experiences to try and prepare you for what to expect. I know that over 2 1/2 months after my surgery and my second round of chemotherapy I became very stressed out because I started having vaginal spotting. But that was the vaginal cuff that was still healing, nevertheless, it was super alarming! Make sure you keep those bowels moving, I found that Restoralax helped immensely and took it faithfully every day. Don’t be alarmed when you start to feel really tired and weak,. Your strength will return. If you feel unsteady, that is to be expected. I used a walker sometimes because I was able to sit in it if I went out, and then I used walking poles too. You may not need any of those things, but don’t feel bad if you resort to some support. Do what you need to do to support yourself. We are all here for you and will try to help you through this as best we can.
2 -
@Sandi6 I have been wondering about you, and how you’re doing. Worried about hearing that you’re struggling with this. Maybe @Strongwoman could weigh in on this topic? The bowel movements are serious business, and I hope that things get moving soon. Have you reconsidered the hospital admission? Weekends are such a tough time in that regard, is there a support number that you can call? Please keep us posted about what’s going on. Sending positive thoughts for you.
2 -
@HorseGirl , I agree day 3 to 5 were the worst days for me as well, tired, achy. Just overall yucky. I used restorlax faithfully also. I did have some incontinence and to this day I have some neuropathy in my hands and feet which does create it's own set of things to manage. I had 3 sessions of chemo then surgery and 3 more chemo sessions after.
1 -
@Sandi6 sorry to hear the constipation challenges. I was a Senokot-S user throughout my chemo. The "S" stands for stool softener (I found out there were two versions so I went for the stool softener one). When I was trying to get my bowels moving post surgery and a few times during chemo, I did a few things that my nurses suggested (and believe it or not they worked). The first was to chew bubble gum. The second was to drink peppermint tea. The third was to walk, even if it was up and down a hallway in my house. The fourth was to drink coffee or tea with caffeine. The last was to try a Sitz Bath. In combination they helped to get my bowels moving. I still use some of these even post chemo. I hope one or some of those may help you too. I asked my medical team if I was able to use glycerin suppositories and was told not to so I'm not sure if your medical team gave you that advise.
Per a comment by @HorseGirl , if there is a support line you can call for advise don't hesitate. My Gyne Oncol is at PMH and they have a 24hr phone line you can access, with nurses who specialize in oncology support. You mentioned PMH so if this is an option take advantage of it. I called them A LOT and found them very helpful.
I hope you get some relief soon.
2 -
Hey @mazupardo I wanted to check and see how you are doing?
1 -
@Sandi6 Well girl, I believe we have been here before. Hopefully your regime works soon. You know if you experience nausea/vomiting, pain then it is time to call your team or go to the ER as you may have an ileus or blockage. Hopefully it won't come to that and you don't get those symptoms. In the meantime keep up your regime and try walking or moving and/or some heat to the abdominal area esp focused on the left side (side it empties from). That may help too. Keep your diet to liquid as much as you can during this phase and until you have had a movement. It will be gentler on you and may help things move along. If you have any specific questions or concerns, just ask. Unfortunately this is an area I am more than familiar with and the bane of my journey. I am constantly tweaking it all just to feel good or normal daily. Diet is a big one that goes with it. Sometimes it feels like my diet is so bland and boring but the bottom line is that it works and keeps things moving.
Hang in there gal and let us know when you have had a movement. For then it's time to celebrate! Like a child getting a gold star is what I feel like when I tell people like my Mom or nurse when I have had mine. Seems so childish but when you are in the throws of it, it is serious business and one does not feel well at all. When the movement happens it changes how one feels and acts. Celebrate the small victories.
You can do this!!!🤗🤗💕💕
2 -
hi @Alwayslearning,
I am doing well! I have just been enjoying my time in between chemo sessions (celebrated my second nephews 1st birthday, went to two concerts back to back lol and I’m at a wedding currently this weekend!!), 11th round wasn’t too bad..by day 5 I was over the worst part of it - number 12 is coming up for me this Thursday 3rd Oct…and my next CT scheduled the week after, I’m nervous about my next CT scan..my tumour markers have been increasing slightly (9th round it was 10, then my 10th round it went to 20, and after 11 it was 24)….im seeing my doctor this Tuesday and im going to ask her for a second opinion. Has anyone here done that with their care team before? I was looking up things and saw that it’s very common and normal to ask for them so I thought I’d do it and see what she thinks about it. I’m not sure what the process is or if I should ask for somewhere specific?How have you been doing? Thank you for telling me about this website at the walk! I didn’t know about it but I am glad to have it now
1 -
@mazupardo. Yes, you should always be able to ask for 2nd opinion. But it is more of a benefit for you if you know where you want to go for 2nd opinion. For ovarian cancer in Canada, there is not much difference in treatment, so I went to the US for a 2nd opinion. If you are in a small centre, it could also make sense to get another opinion in a large academic centre. Maybe you want to get the CT first, so you better know what you are dealing with. This CA 125 is really annoying for me too. If it comes down great, but if it just hangs on a number or goes up again, it’s nerve wracking. Mine went down to 34 but is now 36. Lowest ever was 23 - so I am not sure if this is just a normal spread among people without tumor ( cut off 35) or if it really already indicates that tumor cells survive. Wish we had targeted therapies that can be utilized in these scenarios.
2 -
hi everyone thank you for the kind messages I have been resting and sleeping lots due to the chemo. Currently day4, my current symptoms include: fatigue, constipation, tinglyness on fingers and toes. That’s all for now. So glad to be able to drink water and have smaller meals throughout the day.
My hair situation at first I was anxious. But I have visited the wig salon at PMH and that has helped my confidence, I have decided to cut my hair short like a bob around my ears. Can’t wait to be wearing hats this winter.
I am staying positive during my treatment and looking forward to travelling after all this is done.4 -
@NovaScotiagirl I’m sorry to hear that you still have some tingling sensations. I wonder if that will ever subside? My paclitaxel was reduced by 20% after 2 rounds of chemotherapy, and the neuropathy never returned.
@itzwhatever it sounds as if you are taking the hair loss in stride. It’s not unusual to have mixed feelings. I first went for a bob as well, but when my hair started to fall out 2 weeks into chemo, I shaved it. I tried wearing a turban in public, but people stared at me and I didn’t like it. So I resorted to putting on a wig and makeup when out in public. Sometimes the wig felt hot, and oftentimes on the way home in my car, I would remove it and throw it in the backseat. Overall, the wig looked pretty fabulous though!
2 -
Hi @mazupardo
Nice to hear you are doing some fun things. Good luck with chemo #12 this week. Make sure to ask lots of questions of your medical team regarding the tumour marker and what it means. From personal experience I have sought second opinions for non-cancer related items in the past so I can't imagine why you wouldn't apply that same logic in cancer situations. I will however rely on others in this forum regarding their experience in this matter.
I'm doing well. Coming up to 2 months on the Olaparib. Side effects seemed to have settled down. My next bloodwork is next week to see how my white/red blood cells are doing. My CA-125 continues to hover around 14/15. It's a love/hate relationship with that number. That's what gives me anxiety every time I get it checked. I also had an appointment with the Breast Cancer Gene Carrier Clinic last week. Received a lot of good information due to increased risk of Breast Cancer now due to BRCA-2 gene however the focus for the next few years (unless I exhibit some symptoms) is on keeping the Ovarian Cancer under control. The boobies can wait their turn!!!
I'm going to a concert next week as well and then later in the month to Aruba with some friends. Pretty excited about that.
I'm very glad to have gotten you connected with this forum. 😊 The Teal Sisters here are an amazing, resilient, knowledgeable and empathetic group. Good luck at the doctor appointment. Keep us posted on your progress.
5 -
Hi @itzwhatever
Glad to hear you are getting lot of rest post chemo. Keep track of your symptoms especially the tinglyness in fingers/toes. For me that was a sign of peripheral neuropathy and my medical team adjusted my Pac amount down by 10% plus I used baggies filled with ice, and kept them on my fingers/toes during chemo infusions. Those seemed to help me and the PN dissipated. Also discuss constipation with your medical team as there are definitely things that can be done to address that.
I had long hair which I cut to a bob right before my chemo. I wore beanies (so many options available on Temu and Amazon) through most of my chemo. I did buy a wig at the PMH salon too and wore it for a few occasions. I also bought a nice sunhat there which helped protect my bald head and shade my face/neck. You will find the options/styles that work best for you. If you haven't already taken advantage of them, check out "Look Good Feel Better" (lgfb.ca). They offer online and in person workshops for skincare/cosmetics and wigs/hair alternatives. I participated in both and they were very helpful. Plus an additional benefit of the skincare/cosmetics session was a free kit that was sent to my house with all sorts of cosmetic products.
Glad you are staying positive. The "mental" side of this process is so important. Good on you! Having goal (travel) to look forward to is always nice.
Thinking of you and sending positive vibes your way for your treatments.
2 -
@Strongwoman we sure have been here before! I became complacent during my break from treatment, and I didn’t pick up on the signs.
Finally had a BM! Huge celebration 🎉 I’m back to PMH in the morning, so I’m happy to have things recovering. ❤️🩹 I’ve hit a wall this week as I’m feeling tired of everything, coming up on a year since diagnosis, and still in treatment, so, if I’m feeling well enough, we’ve decided to go to the Aquarium tomorrow afternoon! I’m really excited!
Wishing you all well. This is a tough journey with lots of ups and downs, and I’m so grateful for this group! Thanks 🙏
5 -
I am happy for you. These post-chemo constipations are the worst.
1 -
@itzwhatever constipation can be a big one. It was for me that 100% prior to my first round I have taken a laxative daily for 3 days leading up to chemo so afterwards I was okay. I made the mistake of not continuing a laxative prior to round two and I suffered terrible constipation for about 5 days after.
So if your oncologists recommends taking a laxative during treatment you might take their advice into consideration lol.
I hope by now you are coming up over the hump after round one.
I myself have a follow-up CT this evening. Nerves of steel I tell myself
2 -
@melissa you can do it. Whatever it is, you can deal with it. One step at a time.
I agree, i do laxative now regardless and it improves the big constipation show down a bit.
I just got out of my 9th chemo round (2nd time now for recurrence). This time I had to take 2 days of premeds including high dose steroids - but I did not react to carbo. Guess tolerating the poison is one of the aims. But I feel weaker this time….
0 -
Thanks @Tanja
Wow 2 days of steroids I would be eating like I were going to the electric chair... ( Sorry I have a wicked sense of humor ; ) )
Whatever works we do right?
For me, the steroids only helped a bit but didn't prevent a reaction to taxol. The trick for me was adding reactine an hr before infusion.
@JoanEG I think everytime I will get a scan done you will pop up in my mind, remember bullet holes in the wall.. let my turn my head and see if they've fixed that.........…...nope still there.
Btw, glad to hear the PARP has shrunk the bowel mass!!!!
0 -
So the tech just asked me the usual bunch of questions. Asked about surgeries so I say yes I had a hysterectomy. 30 seconds later she asks any chance of pregnancy....… I was like… I'm no. Think she felt bad. I told her, I get it, you're used to asking these questions all the time.
1 -
@melissa the day after my surgery my gyn/onc surgeon told me not to have sex for 6 weeks. I’m 73 and my husband passed away 7 years ago. She knew that so we both laughed.
1 -
@HorseGirl unfortunately I will never regain the full feeling in my fingers or feet. After 2 yrs it becomes permanent. It has affected my activities as i don't trust my feet to do what they are supposed to. Lol i fall frequently
I am dreading the PET scan and looking forward to it at the same time. Im really hopeful that I am not having a recurrence and that it is all good news.
Take care. Live each day fully and don't waste time on regrets or drama. All the best is wished for you my teal sister
0 -
@NovaScotiagirl I’m sorry to hear that you fall frequently! Ugh! Do you use any mobility aids to assist you such as a cane, walking sticks, or a walker? I’m sure that your upcoming PET scan is accompanied by worrying about the unknown. I hope that once you get more information, that those answers may help with any stress you might be feeling.
I don’t have neuropathy, but man, my legs are weak and I’m still easily fatigued. Last chemotherapy was Dec 2023, and last immunotherapy (Bevacizumab) was less than two months ago. I’m still tired out…guess it’s because I lost so much muscle? Annoyed that I have been left dealing with the inside and outside yard of our house, plus my barn chores on my own. Hubby is a farmer, and he is busy all day. He wasn’t too happy that I didn’t make supper, and I basically growled at him!!! 😆 I’m peeved that he doesn’t realize what I do on my own to keep this place in working order. The more I do, the more he thinks I can do regularly. But some days there’s nothing in the gas tank. I wonder if anyone else has experienced this attitude with friends and family??
Keeping the home fire burning is a pain in the butt!!!0 -
@HorseGirl , I am 3 yrs out and still tire easily. It's a stroll not a race. Yes people who don't go through it don't understand the toll the poison takes on your body.
I don't think there is any way to help convey the message. When you look recovered physically others think you are back to "normal" our new normal is so far from what it was. Do what you can rest when you have to and live your best life. The heck with the rest everything works out as it is supposed to.
1 -
Good morning beautiful Teal sisters! I hope you’re all doing well today! My husband and I came to Toronto yesterday morning for blood work and a team meeting with my trial team, and afterwards we were walking around Yorkdale Mall, and I began feeling really dizzy, and the world was spinning. It felt like I was very drunk.
We came back to the hotel and I slept from 4 pm until 7 this morning, and I feel fine today, which is good since I have chemo soon.
Just wondering if anyone else has experienced this dizziness. Thank you so much. Have an amazing day!
0
