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@melissa no, I am negative for these. I am tp53 positive like the serous cell kind. Are you on targeted treatment,
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@itzwhatever i am sorry you are feeling so anxious. I totally understand. I battle my anxiety every day. The cancerous lymph nodes may shrink with chemo or sometimes they can be surgically removed. I know of some women who received radiation to treat them. Your Onc will share a treatment plan to address the lymph nodes. Have you had debulking surgery yet?
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@Tanja no. I am not on targeted treatments yet, and hopefully I never need to be, or at least not for a long time. I did my traditional 6 treatments of carbo/ taxol which finished November 2023. No maintenance treatment or anything. At first I was very scared to be without my security blanket of some form of treatment but I am learning to live without it. It is just about 1.5 yrs since I had my surgery. My how time moves on.
I feel good, I'm going to the gym 5 days a week, working 3. I saw my oncologist yesterday for blood work and check up, all my labs are normal/good. My ca125 has stayed at 6 for over a year. Last scan in October didn't show anything, so I keep doing scans every 4 months but I might adjust the frequency to every 6 months in the spring.
My dr was teaching a medical student yesterday so she spent extra time with me. And explained the PIK3CA mutation to him, and that IF I need it we will start it
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hi ladies!
I have more updates! Thank you for the advice I will definitely be reaching out to PMH team for more support. I was actually feeling quite ill as my period is heavily bleeding and lasting more than 7 days. I got a blood transfusion and I’m feeling much better. I also got a ct scan. Unfortunately it seems like the disease is progressing in my lymph nodes as well i got a lytic lesson near my pelvis. Talking it out has def help my anxiety once again thank you ladies for the support.
Also I got a genetic testing! So I’m all clear genetically seems like I was a de novo case. My MOC did test positive for tp53 and kras mutation. With the updated ct it seems like we might switch treatment plan in tackling this. 💪
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@itzwhatever I am sure that I speak for all of us when I say that you can always talk it out here. I agree, this is a nice blog where teal sisters actually listen and respond. I wish for you from the bottom of my heart that you get a good effective new treatment plan without too many side effects.
@melissa Apparently, there are 2 kinds of clear cell ovarian carcinomas - those who express PIk3CA and ARID1A and they aere called "classic CCOC" and then those who express pT53 and they are called "HGSC-lice CCOC".
But next to these expression profiles, all tumors (not only ovarian) can be tested for HER2, TER, MMR, HDR, CPS and newly FRalpha as this may provide more treatment option.
In my own journey, I learned that at PMH this is not necessarily done and Health Canada approved algorithm dictated which test is covered for waht tunor, E.g. I payed my own HDR testing.
So, I just want to put it out there for everybody to know and to look into if they need new treatment options.I learned another thing today. And I should disclose that I am a scientist as well, so I can get easy access to newest publications and presentations. Today, I heard Prof Rob Knight from the University of Diego talk
He is involved in the earth microbiome project which is tasked with unraveling the human microbiome (gut, skin, oral, etc), its interaction with environment and its effect on disease. This was a high level talk and for 10 minutes he talked about association between cancer and the microbiome, mainly gut,
He mentioned a couple of very interesting things.
- There are studies using probiotics in cancer patients to see whether they improve the microbiome and outcome of patients. These studies have so far shown, in contrast to what was anticipated, that patients on probiotics have a worse outcome than those who are not on probiotics.
2. He showed that the most impactful factor to influence the gut microbiome to make it more divers (and thus healthier) is dietary intake of plants/fiber (this is considered prebiotic, meaning it helps good bacteria to grow). He showed that not the quantity of plants but the variety of plants one consumes has a more beneficial effect.
So, there is more to following a healthy, plant enriched diet for cancer patients than just staying healthy. It might directly affect cancer cell growth or cancer cell death (if you like). And new also for me, probiotics may not have a positive effect but may actually be harming.
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