Original Message:
Sent: 07-23-2025 08:02
From: Alwayslearning
Subject: Symptoms
@Strongwoman this is for you…
Original Message:
Sent: 07-23-2025 07:29
From: Strongwoman
Subject: Symptoms
@Sylviequebecbc Yes you were on Trametinib about 2 yrs ago cuz that is when I was on it too and had my severe reaction to it. Definitely can't take that drug or any derivitive of it again. Oncologist said it was the worst case he has seen yet from someone taking it.
Good to hear that you still have options on the table and are exploring them. I would be too if they were an options for me.
My latest CT scan showed 2 new growths of relatively large size and also growth on the one by my spleen. So, I had bloodwork done last week and kidney function is still good and the rest of the bloodwork too. I called in for my CA 125 levels and in 6 months time it has increased by 1000 points. So from 994 to 1995. To be expected with what was found on the CT scan. I go back for more blood work in 3 months time. I asked for a prognosis and the Oncologist said 6 months this time. We will see how I am and how my symptoms progress. I am hoping they stay status quo and that the prognosis is incorrect and I beat the odds of it again. Still have living to do with hubby, boys and family/friends. Not ready to leave this earth yet.
Like you, I am finding eating more and more difficult. I eat more often, less each time and spread out throughout the day. Finding the Starbuck's refreshers are good to sip on during the afternoon while I read. Satisfies my thirst and also fills me up some. I found out I can eat Crispie minis. They are 1 mg of fibre for every 8 eaten. What a treat from having soda crackers. Rice Krispie squares have 0mg of fibre too. I have been finding this stuff at the dollar store which is good. I get up during the night and am snacking for some reason. I try not too but my body is hungry so I feed it. I try not to get down during the day and dwell on the fact that there is no cure or treatment left for me. I am slowly ticking things off my bucket list and making sure financial stuff is up to date so hubby doesn't have to deal with it when it comes time. I do my best to go out on little outings with him on the weekend. He seems to enjoy this and finds that it is spending time together. What he is trying to do is get me out of the house. I could care less if we left it or not. I would rather stay home and read most of the time, nodding off now and then in the afternoon as I read.
Good news for me is that there is no pleural effusions so I am thankful for that. I also haven't had to increase my meds or pain meds. Those are positive signs to me that the symptoms still remain manageable. I have been open and honest with the family about the results of CT scan and bloodwork and they seem to be taking it ok. Everyone walks on eggshells and worries when I don't feel well as they keep wondering if the episode I am in, will be the one that takes me to Hospice and I end up in Palliative sedation unable to speak to them. I cross my fingers that we aren't there yet but one does worry when one does not feel well. Keeping in touch with my Palliative doctor helps a lot and she is really good at getting back to me and the crisis at the time. She has been great and I am so thankful to have her on my team. When my symptoms are great so is my urinary incontinence. It seems to increase for some reason. Maybe all that pressure inside that builds up? I manage the best I can and have resigned myself to the fact that normal underwear is not in my wardrobe anymore. I would rather that then leaking and having people stare at me. If they only knew the battle that rages on inside out of my control. But they don't so remain ignorant. Same with the "you look great" comments. Little do they know I fake most of it and just nod and agree when they say something like that.
Eating is becoming harder and harder. I eat more often and less at each sitting. The tummy seems to like that better and it passes better too. I try to eat what I like and chew is slowly and well to help it pass through the digestive system. Best I can do to help with eating. I keep looking for foods to try that are low fibre to increase what I can eat while maintaining the same ol same ol that the family gets bored of.
I had to have a chat with the oldest son last week about myself because I keep telling him I have dinner covered when I really don't care what they eat at the time. So I am learning to say I can't cook today, can you before you go to work? And then letting him cook for everyone instead. It is working out better this way. I have been to the market as well and bought them fresh veggies and fruit so that they have variety in their diet. Just because I can't eat it doesn't mean they should be denied having it. It is working so far and hope it continues like that too. I know there will come a time that I can't do any of it and they will have to figure it out on their own and they will. In the meantime, I have to ask for help when I need it and go from there.
Not sure if any of my info is helping you but thought I would drop you a line today to check in. I read the posts as they come in but don't feel compelled to answer back right away. It is not that I am not interested in what everyone is saying, it is finding the energy to respond to the posts and being empathetic at the same time. It is a delicate balance and one does have to be in the right frame of mind to respond.
Well my Teal Sisters, It is time for me to go find something to eat for breakie, make my bed and put in a load of laundry. I tend to wear the same thing over again as I really don't go anywhere. Saves on doing a ton of laundry too. It was great hearing from you, @Sylviequebecbc Since our diagnosis is quite similar it is always great to get caught up with you. So thankful that your team has found some options for you and that you are trying them. I hope they work for you and give you more quality of life for a long while. Please keep in touch and we will chat later.
Original Message:
Sent: 07-18-2025 14:09
From: Sylviequebecbc
Subject: Symptoms
Thank you Tanja for sharing this. I was on Trametinib 21/2 years ago if I remember correctly, and in my case, it didn't help. There was a 50/50 chance of working.
@Strongwoman, my thoughts are with you.
I am still on the POG study, the Afatinib i was one seamed to help a bit, but my main issues now are ascites and pleural effusion, and my hemoglobin dropped again, I am at the hospital now getting a blood transfusion, I should feel more like myself after. My last CT showed an important pleural effusion (drained 1.5 L last week), but the lesions in my abdomen were "stable", no new lesions. So I guess that is a positive! I am going to start on the 2nd meds that came through in my profile in the study, an immunotherapy. My oncologist is in the process of finding funding. I should start in the next 2 weeks (I hope).
My appetite has been low, can't eat much each meal. I have definitely been losing muscle mass, hope that was because of the low hemoglobin.
I would love to hear from you ❤️
Original Message:
Sent: 07-10-2025 22:19
From: Tanja
Subject: Symptoms
@Strongwoman I, too, missed you and wonder what happened. You were the moderator when I came on this Blog 2 years ago. And I felt more calm being in this group learning that I am not alone and that the questions and fears that I had and have, have been experienced by teal sisters before me and next to me. It is a bit heartbreaking to see you down. This is probably how it is, the tumor sucks the life out of you. I felt particularly sorry when you said that you are still making dinner for your family. Do you think you can get your family to make the food for you, maybe tendering to your wishes and ability to what you can tolerate. Maybe after all this fight, you have deserved to take a more egoistic approach and voice what you need and what you want. I know, it is easier said than done, and I am actually not sure whether I, too, would still do everything for my family rather than just sit in the corner, even on the last day of my life.
You said , you have a low grade serous ovarian cancer. You may have already seen these or discussed these options with your oncologist, but just in case
https://www.oncologynewscentral.com/drug/fda-approves-first-ever-drug-combo-for-low-grade-serous-ovarian-cancer
| New results from a large clinical trial provide the first strong evidence that a rare form of ovarian cancer, known as low-grade serous ovarian cancer, should be treated differently from other forms of the disease. The trial involved women with low-grade serous ovarian cancer that had come back after earlier treatments. Participants who received the targeted drug trametinib (Mekinist) lived ... www.cancer.gov |
Access in Canada: It is approved by Health Canada for metastatic melanoma and non-small cell lung cancer. Again, since approved, maybe there is a way to get compassionate use.
Thinking of you. And wishing you as much support and love around you as you need.
Original Message:
Sent: 07-08-2025 09:51
From: Strongwoman
Subject: Symptoms
Hello
Ya I have been MIA. I called in and asked for a CT scan to be done due increase in symptoms and frequency of them. I needed to know what was going on inside. Tumour markers keep rising which would indicate growth. Well scan came back and there is definite growth. So when I go for my Oncology appt on Monday and get bloodwork I will once again ask if radiation is an option or not. I am not sure what they will say but asking does no harm. All I know is that the growths explain the why of why I am having more episodes and such difficulty with eating no matter what I do. So I understand where you are at. I so wished your new treatment protocol would help. I am saddened that it is not doing what it should be for you. In the meantime for me I live every day for what it is and pray i don't have any partial blockages in the meantime. I rely on my palliative doctor to help me get through them if I do. Just had a bad one Sat night and slept on/off all day on Sunday. Still tired every day and struggle with what to eat daily. I know I am worsening and the family knows too. It has been difficult to navigate my own feelings let alone what they are going through. Every time I have an episode it frightens me that I may not come out of it and will be on my way to Hospice for the end. It has been a lot emotionally as well as physically. The emotions come randomly and I will be in tears before I know it. It is hard to remain positive daily. To add to it, l broke my hand in a fall so all I can do is read or watch TV. I got my cast off last week and now have a splint on for 4 wks. Of course it had to be my dominant hand. I am thankful the splint can come off/on. I can shower without a bag over my arm/hand.
Since we both have LGSC I look forward to your posts ro see if you have any insights that I haven't found yet. I am asking about any trials that may be out there too. I doubt there is but worth the ask.
Basically I am at the end, wondering when that end is coming. Praying daily that today is not the day. Hubby is in this denial mode where he is wanting to organize stuff from our move which is fine but I feel he is doing it so he doesn't have to face the fact that I am worsening and won't get better. He tries to plan outings with me and I go but am tired when we are done. He missed the time when I felt good and could do more. Currently I am content sitting in my chair, reading and relaxing. I don't have the energy most days to figure out what they will have for dinner. I end up doing it but could frankly care less if they ate or not. Especially on the days I don't feel well. The boys get it and don't at the same time. I guess everyone is doing what they can and handling it in their own way. It is difficult managing it day to day. I just pray that I feel good daily and can engage with them. The eating I go with the flow and see what my body will tolerate any given day. Which isn't much esp these past few days. I am going to try taking my splint off and try journaling over the next few days. If it hurts I will stop and rewrap my splint. I would like to get back to journaling as I have stuff to say and want to get it done.
I, too, think of you daily and wonder how you are doing. I have been following the threads the ladies have been posting and feel for them all. Some, I have been there and totally get where they are coming from. Others I try to put myself in their shoes and wonder if I would follow the same path or choose quality over quantity. That is definitely a personal choice. It's how I base all my decisions throughout my journey. If I can't be present with my family I don't want it. There will be a time I won't be able to and won't get a choice until then I do my best to man my own ship and be as present as I can with them.
This disease is unrelenting and so far I have surpassed timeliness previously given and am forever grateful for it. I am sure my new prognosis would be a short one but don't want to ask. I know now my body will tell me when it's time. In the meantime I will enjoy driving and any other freedoms i have currently that I don't need assistance with. I wish you all the best and look forward to hearing from you again. Hoping that if the current treatment isn't working for you that the other one will I will look for your posts to get updates on that. In the meantime, live your life the best you can. Every day is a new day!
Chat soon
Strongwoman
Original Message:
Sent: 05-05-2025 13:37
From: Sylviequebecbc
Subject: Symptoms
Hi everyone,
I have been living with my low grade OC since my recurrence in 2019, was told Jan. 2023 that I have reached all treatments available with no results. I am currently in a study in my province of BC , and I am also experiencing new symptoms: I have a pleural effusion that was drained on April 17th, but is now happening again. I developed a pulmonary embolism, so I am on an anti-coagulant, and my left leg swells up everyday, they checked for a blood clot but didn't find any.
Has anyone out there having similar symptoms? I am wondering if my prognosis is poor, I am talking to my GP in 2 days about palliative care, feeling isolated...