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Hi! Joined my first tea today and I've been reading the book that was shared. 2 things interesting to me 1) it talks about first line treatment being curative! I never hear cure/ovarian cancer together 2) it also says ca125 is not the preferred way of tracking for reoccurrence which is currently all my Dr is doing to track for reoccurrence. How is everyone else being tracked? Thanks Heather 

Good morning Imissed the Teal Tea today. I have been busy with my elderly Mom who was just released from hospital. 
'welcome to the group hgtv.

 I  am also being tracked using ca125 along with abdominal and chest CT scan every three months and follow-up with my oncologist 

 

Oh interesting! I’m not having any CT scans so it’s just the Ca125 monitoring! Anyone else just tracked by ca125? Thanks for replying!
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Hi@hgtv I am a patient at PMH in Toronto and because I'm on Lynparza I have my bloods done every 2 months including CA-125. My oncologist thinks there may be an over reliance on the CA-125 which is interesting. I think it's because it can be influenced by so many other factors including any inflammation in your body from unrelated cancer items. That being said, she focuses on my over bloodwork results in tandem with the CA-125 and importantly what I'm reporting in terms of increasing or changing abdominal pain, changes in bowel movement, overall how I'm feeling etc.

She has said that if my CA-125 were to double or triple from the last result then it would warrant further investigation. My CA-125 has held steady around 18 for 10 months however during that time I've had terrible abdominal pain which is what led her to do a CT scan. Results were all fine (last was April). That was my first CT scan in 6 months. Lynparza has crazy side effects so it could have been that. 

I know, oddly, that there is clearly inconsistency in how different docs/oncologists approach our monitoring. The best thing you can do is be a strong advocate for yourself. If you truly feel a CT scan would be helpful then voice your concerns & rationale to your doctor. At least establish with him/her an understanding of why they only track CA-125 and why you feel other tests may be warranted. 
Keep us posted!

Hi @hgtv I was looking back through some recent past discussions and saw this one. I'm curious if you were able to discuss 'monitoring' with your oncologist. Did he/she provide any clarity on the approach they take? As we've learned from other posts here, there clearly is no one standard approach. Also, I should have asked this when I first responded, where are you at in your journey? For instance, are you past any surgery, chemo and on maintenance? Please only respond/share if you are comfortable. I guess I'm wondering if your oncologist is only monitoring CA125 based on the length of time post you last treatment. I'm not saying that's wrong/or right, I'm just curious.

Thanks in advance for sharing and starting this discussion. Hope you are doing well.

#Healthandwellness

Hi! I’ll be seeing her in a month and will ask. So I’m one year in remission. I tried nariparib but it made me quite dark and dark as in dark thoughts. I was quite bleak and it wasn’t any quality of life so I stopped! I’m one of those people who throw everything else against it - massive diet change, massive lifestyle changes, exercise, supplementation and terrain testing through an Integrative oncologist in Chicago / Dr Keith Block. I’m on Ivermecin. I juice daily. Oh I also do High Dose Vitman C. I’ll let you know what my oncologist says in sept. Thanks for checking in x
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@hgtv ... one year is great!!! Good for you for trying anything. Whatever works for you and is supported by your medical team! If I may ask, what is terrain testing? What is an integrative oncologist? Why Ivermecin? I'm curious and I'm betting others may be as well. Thanks in advance for sharing.

Oh I didn’t really tell my primary oncologist about what I do with my integrative team (back when I had active cancer) because I every time I asked about anything it was always a no. Can I take melatonin? No. Can I take high dose vitman c? No. I personally don’t think standard of care is enough. Chemo destroys cancer but it destroys your immune system also and when the cancer is hopefully gone your body’s immune system isn’t strong enough to fight reoccurrence. An Integrative Oncologist believes in both standard care like surgery and chemo when required but also believes that your body needs to be strengthened though things like diet (I changed everything ) and exercise and supplements where you are deficient. Think of terrain like this …. If you had a sick goldfish and you pulled him out of the fish bowl and gave him antibiotics to heal him and put him back in his same murky water in his bowl then he’s just going to get sick again - so terrain is like the water - you need to heal the environment in which the cancer thrived or it could come back. And that includes things like inflammation. So the terrain testing tests for many many things including inflammation - if your terrain is healed it’s much less hospitable to cancer. Is the thinking. And Ivermectin has actually been studied and showed great impact on some cancers buts it’s not part of any SOC and quite controversial— I’m also cautious of talking about this stuff because it’s polarizing and I’m certainly not offering medical advice but the idea that it takes radical change to get radical healing resonated with me and when I was diagnosed and was told the statistics of my diagnosis I looked at the sky and thought what are we even doing …. Years of suffering to statistically lose this battle… there must be more I thought and that’s when I started researching and researching alternative healers who had seen success and there were some common elements. Was this helpful? Again don’t want to stir any pots here but I feel like I need to be honest about my journey! I mean there are no guarantees ever but if I weight the risk vs reward like with ivermectin / why wouldn’t I try it??? What do I have to lose ya know?
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@hgtv

Wow! I would love to hear more about your journey. Are there things you have done that have had specific results in relation to your cancer? 

I believe that integrative care should be part of SOC and that every cancer clinic should include this as part of a patient's "whole" care.

This feels like such a taboo subject! It really shouldn't be. I do understand that some medicinal remedies (herbs, mushrooms, Chinese medicine, etc.) may interfere with some drugs…but there really is not a lot of research in this area!! Changing your diet to be more focussed on healing your body should be an integral part of our care and we should have the option of having someone on our team to direct us in that respect. We shouldn't have to rely on Dr Google to try to navigate the healthy body aspect of our care. 

This is a safe forum to share your alternative explorations. This may also bring the issue to the forefront of our medical care. If we raise this with our care teams, and they keep hearing about it, maybe it will get more consideration on a higher level. Honestly, I really don't understand why it isn't part of our care already…it's not a new concept!

I look forward to hearing more about your journey. Thanks for sharing. 

@GloHo totally agree,wouldn't it be great to have a full service team that treats medically and holistically.  The last few years I had started adding supplements to my daily routine, I started chemo and the pharmacist was like "don't take that, that interferes with chemo, stop that 3 days before and after chemo. ''. Etc….now I'm left afraid to add in any vitamins or supplements without medical approval first even bough there are benefits to them.  I wish there was a one stop place to care for all our needs and give us he tools to fight this war for as long as we can.

Sorry I just reread my post and I sound like an ass. To be clear I’m not a miracle - if I was a miracle I wouldn’t have gotten cancer in the first place hahaha my results were called miraculous - which could have been the chemo or the chemo with the addition of the things I took or I wasn’t stage 3 but 2.
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@hgtv you just made me LOL. You don't sound like an ass at all. You were sharing your story. In the definition of miracle, these two items seem to me to apply: 

• a highly improbable or extraordinary event, development, or accomplishment that brings very welcome consequences.
• an amazing product or achievement, or an outstanding example of something.

There are clearly some miraculous things that have happened in your journey. You are doing well. I would suggest that the definition applies!!!!

@hgtv thank you for sharing all this information and the clarity. As you qualified, you are not offering medical advice rather you are sharing what you have discovered and researched and what is working for you. While each of your journey's are personal, there are so many intersection points and areas beyond our typical Standard of Care (SOC) that I for one am very happy to learn and grow my knowledge. I had no idea there was such a thing as an "Integrative Oncologist" so that's really interesting. I also LOVE your terrain explanation. It makes such perfect sense (and reminds me that I really do need to do a better job on managing my own terrain). As @GloHo said in her post, this is a safe space and forum for sharing. It's not a "this is what you should do" space rather, it's a "are you are aware of this?" kind of space. What we each choose to do with the learnings is up to us. So again, thank you for sharing. As you can see, it's already sparked curiosities!!

I do know that for PMH patients (perhaps it's available to folks outside of PMH but I'm uncertain) you can access a nutritionist and there's the Ellicsr kitchen program. The latter you can access on your own. For the nutritionist, I was told you can self refer but when I look at the webpage (link below), it says you need to be referred by your health team. Regardless, they are available resources if you want to explore nutrition.

https://www.uhn.ca/PrincessMargaret/PatientsFamilies/Specialized_Program_Services/Pages/ellicsr_kitchen.aspx

https://www.uhn.ca/PrincessMargaret/PatientsFamilies/Specialized_Program_Services/Pages/nutrition_therapy.aspx

I look forward to continued learnings!

#Healthandwellness 

Happy to share more on my story! And the reason oncologists don’t already recommend these additional modalities is complicated but I think rooted in pharma profit. They don’t like things competing with their drugs for proving efficacy. The other reason is that unfortunately some modalities cost money that the government doesn’t cover: for example high dose vitman c is 200 per pop. This should be adjacent to chemo (there are many many studies on its efficacy!!) but again there is no profit for anyone because you can’t patent vitman c. Insurance companies are involved too. They get kick backs from pharma companies for pushing their drugs. It’s not right and every patient in my opinion needs to champion their own care of they risk being a statistic. Here is my story as brief as possible
- Jan 2024 stomach bloating that was beyond normal - zero other symptoms
-doctor sent me for abdominal scan
-upon results I was marched over to st Joes
-the realized it was ascites then tested thr ascites and for whatever reason there were no cancer cells in the ascites - I actually never asked why come to think about it
-they didn’t think it was cancer because I had zero other symptoms and I felt fine
-finally ct scan showed mass on peritoneum and cancer was confirmed
- because I felt fine they let me go and I was transferred to the care of PMH gynaecology
- I was terrified and in survival mode and honestly the whole thing is a black out to me now hahah all I know is I wasn’t really listening to much I just wanted to hear that this is treatable which of course it was - my oncologist scared the shit out of me so I mostly communicated with her patient care nurse who saved my life countless times mentally
- she didn’t tell me any stats on the horrible prognosis just that treatment could fix it which is true
- diagnoses stage 3 high grade serous ovarian
-my doctor and team decided surgery first then 7 chemo
-first surgery in Feb was awful - I woke up cut in half with the news that there was too much cancer across my bowels etc to operate so they closed me back up and said now we do 4 chemo - then try surgery again to remove whatever was left- then 3 more chemo to mop up whatever surgery didn’t get
- I still didn’t know the reoccurrence statistics
- started chemo
-my ca125 started at 800 and it was lowering
-after 4 chemos my ca125 was within normal range and surgery was next
- I had started to research a bit and had a daily juicing habit so I was on my way
-but my world changed when after the 4 chemos my oncologist told me that surgery to remove the remaining cancer was next and I qualified for a thing called HIPEC. I had never heard of it and thought it was great news! Until she dropped this words “yes it’s could to help extend your survival free progression time” or something like that. And I said huh? I thought we were aiming for a cure but this sounds like we are just delaying death. And that’s when she said (or I just heard for the first time) that 85% of patients reoccur and then my world crumbled. I got very dark and went nuts with google. I was bleak.
- this is when my real research began. 15% was not good enough.
-the first thing I started was Reiki - and it really helped lift me out of the dark whole
-I found a naturopathic oncologist in Toronto and started seeing her and started working on my health and diet
-I quickly realized my doctor would say no to anything I asked about including supplements so I stopped ask. She could give me 15% chances of staying cancer free but I could take vitman c?? Common! What are we doing here??? Are we living in a crazy factory? Haha
- I found Dr Block in Chicago and he started me on a battery of more supplements - happy to share if you like? He also taught me about off labels drug like ivermectin. And his terrain testing. It all made perfect sense.
-I needed to be the US for his terrain testing which I ended up doing in a October - based on the results my supplements were updated for the things I worked on - also diet stuff like eating fermented foods daily etc
- I also focus on nature - 15 mins of sunlight in my eyes every morning
-grounding sheet
-5k to 10k steps a day
- some weights
- diet was a big focus as I’ve mentioned
-ivermectin
And then another mine boggler / I started meditating then one day I had a profound experience where my deceased family members came to me and it was naturally mind blowing - I was crying and I immediately sat my husband down and explained what happened and he is not very woo woo hahaha but I said “I think I’m healed” and he said OK well surgery is in a few weeks.
- so on surgery and hipec day I went to sleep and I woke up to messages from my husband saying you fucking did it!!! And I’m groggy and confused and he told me that my surgeon - instead of calling at 6pm called Ian at 11am dumbfounded because all the cancer was gone! No surgery required just hipec.
-I was still told to complete the 3 other chemos afterward anyway - Dr Block agreed so I did them. 2 surgeries and wasn’t really operated on!
- I will mention something here / there are 2 options here for my healing 1) I’m a miracle which I’m ok with!!! 2) I was only stage 2. I found out post surgery that I had stage 4 endometriosis which I guess can be confused with cancer. Dr Block has raised the possibility I was just stage 2 but my oncologist at PMH did not update my chart and I haven’t asked. I’m honestly still scared to death of her and every time I go in there - they say something that traumatizes me! I’ll say how long have I been in remission for? And they’ll say oh we don’t say remission around here and don’t expect to stay in remission it’s not realistic. So I go home and panic for a week. It’s not worth it. I do my blood tests and scoot.

So it’s a lot of info and I know I’m missing stuff and I’m happy to share the exact supplement list I’m on if that’s helpful? If I do reoccur I will likely add other things like fasting to my regime as well as do whatever SOC makes sense. I’ll also get a loan and head to a place like Hope4cancer in Mexico which focuses on full body healing and not just blasting my whole body with chemo.

We need to get our immune systems functioning to stop reoccurrence.

I spend a couple hours a day stacking things that keep my terrain clean and my soul alive. Nature is key to my healing I think. The darkest period of light but I discovered so much healing too. I’m defiantly not the same person I was before.

If you have any questions about anything in particular please ask oh and I read a lot too - Radical Remission was a one book id suggest everyone read!!! Xx



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@hgtv thank you so much for your story. I know sometimes it can be very hard to relive pieces of it and it sounds like you've had some traumatic elements in your journey. If it's a miracle - so be it. If it was an incorrect diagnosis but works in your favour, so be it. Regardless, you are doing what makes sense for you and that's what matters. Your pathway to diagnosis was different than me however we are in the same timing...I was diagnosed in late January 2024 and had surgery in February - at PMH. High Grade Serous. Stage IIIC. My story is on my profile. I'm sorry that your experience at PMH has not been positive. I can't say enough about how well I've been treated by everyone I've encountered.

I was also interested that they did the HIPEC at PMH. I had heard from a fellow teal sister on this site that they do that procedure in Ottawa. I had not heard of it being done at PMH (however that's not to say they aren't doing it...I just hadn't heard anyone in this forum mention it relative to their treatment at PMH). For those who have not heard of HIPEC here's a description:

"HIPEC surgery, or Hyperthermic Intraperitoneal Chemotherapy, is a two-part cancer treatment combining surgery to remove visible tumors with heated chemotherapy directly applied to the abdomen. This specialized procedure aims to eliminate cancer cells that may remain after surgery, potentially improving outcomes for certain abdominal cancers."

I don't know how decisions are made to use HIPEC as a treatment option. It is interesting to know however that it exists.

Thank you as well for the book suggestion. I've been writing them all down as people make suggestions. 

I'm sure other Teal Sisters in this site may have lots of questions for you. I appreciate your openness and willingness to share. Thank you. I hope your journey continues to keep you cured! 

#Healthandwellness #Treatmentandsideeffects

Yup they did Hipec at mount Sinai because they don’t do it at PMH. Not sure why and was my oncologist just different hospital!
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@hgtv thanks for the clarity. That is interesting that your procedure was at Mt Sinai. 

Your story is compelling hgtv, and I really appreciated learning about your cancer experience and healing perspective. It has certainly got me thinking about my survivorship options as I head towards a meeting with my oncologist to discuss maintenance. I must admit that the conversations here about side effects versus quality of life has discouraged me. I want to live of course and I am willing to do whatever I can personally to stay well, but I admit that I am very worried about suffering (too much) with side effects that worsen my health in other ways. I plan to have a very frank conversation with my oncologist about my prognosis, cost/benefits of her suggested drug regimen and my personal values about quality of life and what that actually means to me. 

When I met her last November, I was feeling very unwell and my CA125 was off the charts, something like 2800. After presenting my diagnosis of stage 3 high grade serous carcinoma, she asked if I wanted to know my prognosis. I had an idea of what it was via Google, but I could not bear to hear the stats from this doctor, so refused the information. Quite honestly if I had accepted these broad-based stats (that did not take into consideration my health & overall fitness), I probably would have given up and arranged for MAiD. But I knew enough to use my critical thinking skills and focus on what I had control over: nutrition, physical activity, counselling, social support, creativity, nature walks, gratitude, laughter, and love bonds. 

So right now I am okay, actually really well. Someone called me the "unicorn" of survivorship, and I say cautiously, "at this time", thinking about the recurrence stats. Maybe I am just damn lucky. I take nothing for granted. I agree that we need an integrative approach and the closest I have found is Inspiredhealth, which offers support and information across many domains. I have used them for nutrition advice, fitness classes and mental health support. I do like the idea of oncology that incorporates wellness in all these areas. 

 I was afraid to take supplements around the chemo days, but I am now in the rebuilding stage. I appreciate how you have found healing avenues that fit for you. 

Leslie 

@hgtv

Thank you so much for sharing your journey.

I have heard about HIPEC and I find it curious that the treatment isn't used as SOC for patients who are eligible. It sounds like a treatment that could eliminate those little microcells floating around after surgery and first line chemo. 

I would be interested in hearing about the types of supplements you take. I am very cautious around all this stuff and do extensive research to weigh the pros and cons of even some of the most basic supplements. And, yes, same old response from oncologists most of the time. There have been occasions where they have done some tests on my vitamin/mineral levels based on the information I share with them and have acted on it. 

I believe there is a Teal Sister who did the Mexico food therapy treatment. You may want to do a search to see if it's the same program you're considering.

I look forward to hearing more from you. 

hi @hgtv - it appears that there are differences in how doctors/hospitals/provinces monitor for recurrence. I am being monitored through CA125 and report of any physical symptoms (and physical exam when I see my oncologist). My oncologist has ordered CT scans when I've reported symptoms of concern, but CT scans are not a regular monitoring tool. Last time I looked into the research, there really weren't any reliable methods for monitoring for recurrence. I've been told CA125 can be a good indicator if it was elevated at diagnosis, which mine was.