Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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).
My journey with a food therapy
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Hi @Strongwoman!
Thanks for your post. I am keeping up with the Gerson therapy, so far so good. I had my first monthly blood work last week and a follow up with my doctors, all is good, my WBC is slowly going up back to near normal, my cholesterol is lowering, my triglycerides are now normal, all good!
I will have my CA 125 tested on my next blood test, in 2-3 weeks, fingers crossed!
I am greatful for the helps my daughter and husband are giving me, makes my days better!
I will keep you posted as I go along,
Take care too0 -
@Sylviequebecbc that's wonderful news and you sound so optimistic. Here's hoping the CA125 reflects the treatment. We're all rooting for you, gal.1
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@Sylviequebecbc
Checking in to see how you are doing with your regime. So good to have hubby and daughter on board to assist with things.
I have been thinking of you and wanted to touch base to see how you are doing. Please do give us an update as I would be interested to hear and as long as you would like to share with the group.0 -
me too - would love an update - I have been thinking of you ofen.0
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@Sylviequebecbc Would love an update - how are you doing? How are your numbers? My daughter wants me to do this so I'm very interested. Are you able to continue with the protocol?0
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@BellaDonna1959 Good morning! Sorry for the late posting . I have been keeping busy, 4 months and counting on the Gerson! All is going well so far. I am still following the protocol, feeling good! 🙂
I have blood test every months, zoom meetings with my Gerson Dr following each test. It can take a few months for the body to fully detox, depending on each person's history. I would highly recommend this! Let me know if you have any specific questions, I promise to check this site more often!
Here is my breakfast this morning, my favorite meal of the day! Have a great day!
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@Sylviequebecbc Thank you for sharing. I, personally, will be waiting for your update with your Oncologist this month and what the CT scan and blood work is showing there. Take care0
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Thanks for the update. Let us know if your test results show positive changes - that would be very motivating.
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@Sylviequebecbc Hello! I am checking in to see if you either have a date for your CT scan OR have chosen not to do one since you are feeling better. I would be interested either way. I started turkey tail mushrooms on the weekend. The first 2 links are what they look like before I put them in the oven to dry them out. The last 2 pictures is what the tincture looks like initially. It is now sitting for 6 wks and will then take another picture then. The tea does not taste bad. In fact I quite enjoy the taste.
I am off to get my CT scan today and see what is going on inside......stay tuned!1 -
Hi @BellaDonna1959 and @Strongwoman
Nice work on the mushroom tincture! My PET scan is on Oct 10th, I do hope I will get good news. I was having increasing amount of vaginal bleeding, but it is slowing down now! I am so happy about that. My blood work is good, should have another CA 125 done in a few weeks or month, 6 months and still going strong on the therapy!0 -
Great to hear @Sylviequebecbc - can't wait to hear your results. Hoping for the very best news.0
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@Sylviequebecbc Thank you for the update. I imagine the vaginal bleeding was worrisome at the time. I am thankful it has slowed down. Let us know any updates you have when you are ready to share them. In the meantime, keep going with your therapy and I look forward to your update.
Yes, I am excited about the tincture. The tea is surprisingly sweet tasting. I was expecting a really earthy tasting tea and am happy with the surprise!0 -
Good morning ladies!
Had my CT scan, talked to my oncologist, and here is the 411: generally, the cancer has grown, but The lesion on my liver is gone! And the report also states " the majority of the hypermetabolic peritoneal metastases are calcified" !!? My oncologist said it could be a positive thing...😊
But for the last 2 weeks, the vaginal bleeding has increased I don't know if any of you are experiencing this? My GP has prescribed Tranexamic Acid, but I am hesitant about taking that, since I have a history of deep vein thrombosis ( happened twice ) ....is anyone dealing with this? I feel I am in a race and my cancer is trying to take the lead....0 -
@Sylviequebecbc I don't know what to do with your news. Do I say I am happy or not happy. How do you feel about the information you were given? In some ways, your post suggests that you are perhaps happy with the results and that the lesions are perhaps in a good state (as suggested by your Oncologist).
I don't like the fact that you are experiencing vaginal bleeding and for a few weeks now. That is concerning and hope you address that and obtain some answers/guidance soon. I, personally, have not experienced that as of yet but do know other ladies on this site have. I looked up the Tranexamic Acid and I think you are on the right wave length regarding the deep vein thrombosis. It says that ANY blood clots, embolisms, occlusions or thrombosis are to be discussed with your doctor. It acts by BLOCKING the breakdown of blood clots which would be very concerning if you had a history of this previously. I, personally, don't think I would chance it given your past history but you are in the drivers seat of your own journey. How do you feel about it, given that information?
I know how you feel "in a race and my cancer is trying to take the lead", this is a hard one to process on many levels. Let us know how we may be able to assist you with this or if you need any suggestions in trying to process it.
Take care and so nice to hear about you. Thank you for the update,1 -
Happy to hear from you Sylvie. Some mixed results. Are you off chemo now and just doing the Gerson Therapy? Sorry to hear it has grown - does he mean the lesions got bigger or they spread to other areas? Great news about the calcifications and the liver - sounds like the blood supply got cut off some growths. My own CA-125 is the lowest ever - 73.7 down from over 424 at diagnosis. My scans show 'stable' no enlargements or spread - but I constantly have the pains all around my belly and other areas coming and going and I'm always wondering what each twinge/pain/pressure/bloat means. I wish we could just scan our bodies with a new age tool and know exactly what is going on, where and what to do about it. The unknown is a challenge. I don't dwell on it, but it hovers like a mist - some days I pay it no mind at all and others it engulfs me a little. But my overall fear of this disease is way down now. I'm on Taxol, Avastin and a super healthy diet and RSO oil. I'm always eager to hear about your updates. Sorry to hear about the bleeding. My most annoying side-effect is the heavy tired swollen legs and the constant tingling/numbness in my fingers and toes. Keep on keeping on Sylvie~1
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@BellaDonna1959 my oncologist stopped all my treatment since none helped. He also said that chemo will only give 15% to 20 % chance to help, and my quality of life would decrease. That was last January and that is why i looked for an alternative therapy. So i am keeping on the GT and keeping my fingers crossed!1
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@Sylviequebecbc Good for you! Great outlook in my opinion! Do all that you want and can do while you can as we never know when our bodies will decide that it is time to slow down.1
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@Sylviequebecbc Thought I would check in to see how you are doing. I am headed to PMH on Monday to discuss what possible Phase II trials are available, what they are, side effects, outcomes etc to determine if it is or is not an avenue I am willing to look at. What I do know, is that I will not sacrifice the quality of life I currently have if the alternative will make me sicker/weaker with little to no better outcomes. I like how I can function and even if it is diminishing a little, that is ok. I don't want to feel ill on top of it, if at all possible. If everything goes along well, may consider a juicer. Do you have any brands that you have looked into that you would say, 'stay away from' or 'are better'? Let me know as I realize fresh fruit and veggies are no longer in my future and will miss that. If juicing is acceptable and tolerated by my body then that is ok too. Take care....
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Hi Ladies! Sorry I have been silent for a while. I am still on Gerson, still hoping. My issue is that I have vaginal bleeding and passing large clots from time to time. My hemoglobin dropped too low last week so I had to get a blood transfusion. My oncologist referred me to a radiation oncologist, so will see if I am a candidate for radiation to zap my lesions in my vaginal vault. Any body else went through this?0
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@Sylviequebecbc I am sorry to hear you are experiencing this. It must be scary and worrisome to be going through all that. How did the blood transfusion go and did it help? I have not been through that but have been assessed for radiation prior and was not a candidate at the time. Please keep us posted about yourself and what happens regarding radiation. Wishing you better days to come.0
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Thank you @Strongwoman!0
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@Sylviequebecbc Thought I would check in with you to see how you are doing this week. Any issues? Stable or having difficulties? My thoughts are with you as you continue along your journey. 0
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Hi @Strongwoman
No bleeding for 6 days, it does come up on and off. My referral for radiation as been approved, I just need another CT scan before I go meet the radiation oncologist. The only issues here is that I live in a small city, in the south-east of BC and the cancer center is in Kelowna, 6 HR drive fro here! Wish our local régional hospital had a good oncology department !
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@Sylviequebecbc That is good to hear that you have not had bleeding for 6 days. How many rounds of radiation will you have for this? One thing my friend told me is that radiation isn't felt until about the 2nd week. Then the symptoms really set in. Some food for thought before you begin. Wow! 6 hours away eh? That is quite far. Do they have hotels near the hospital with reduced rates for cancer patients? I would hope so and might be worth the ask. That is too long of a day otherwise. Let us know how you make out in the coming days. I will be thinking of you. Thank you for the update. Night 1
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@Sylviequebecbc I thought I would check in to see how you are doing. Any developments regarding receiving treatment soon? How has the bleeding been? How are you doing in general? Let us know when you can.
Take care of you! 0 -
@Strongwoman
I have my consultation appointment on April 8th, so I will find out then how many radiation treatments I will need. I would love to connect with someone who has had radiation to know how it went and how they felt, I might create another conversation about that.
Funny enough, no more bleeding since my big 3 days of bleeding at the end of February!
In general, I feel pretty good. No pains, my appetite is ok, I am still following the Gerson therapy, down to 8 juices per day plus my 3 meals, and 2 coffee enemas. I haven't been as active since I started Gerson, no time to go skiing! So I am pretty out of shape!
How are things with you? How are you feeling? Where are you in your journey?
Sending love ❤️0 -
@Sylviequebecbc That sounds like a great idea...starting a new thread on Radiation as the topic. I am positive there are ladies that have been through this before. Don't forget to check by typing that topic in the search bar for any previous threads that may come up as well.
Thankful that the bleeding has ceased for you. That must be a huge relief. I bet the Gerson therapy is time consuming. You seem to be doing well on it which is good to hear as well. Perhaps you will find some free time to do something fun for yourself soon.
As for me, I tried Tamoxifen as recommended by PMH but the side effects were too much. I let it go for a week then checked in with the pharmacist and my team before making the decision to stop it. I took a break from it and waited 3 days and have since resumed with the Letrozole. It seems to have minimal effects and will remain on it until I am told I shouldn't. I struggle with bowel obstructions on a regular basis and have to follow a low residue diet which means no more than 2 grams of fibre at a time. It restricts so much including NO fresh fruit or veggies. I love food and this is a hard one for me. I do it because I am so fearful of the obstructions. I meet with a surgeon on Monday to see if he can do a pro-acitve surgery to help with these obstructions I am having. I have no idea what he may or may not say. I will post more after I have been to see him. Some hypothesis is that I may end up with some sort of ostomy if the surgery is done. I don't know if this is true or not. Will see. It would definitely be life changing if I do and a learning curve. Will see how it goes...stay tuned.
In the meantime, have a wonderful weekend whatever you are doing. 0 -
@Strongwomen Hi, I am sending you courage and love, that would be a really life changing event. I have started my radiation therapy, had to drive 550km from home to get here in Kelowna BC. I am staying here for the 5 treatments, to stop the bleeding for a while.
It is going well so far, not much side effects til now. The "peak" will happen 7 days after the last treatment I am told, so we'll see.
Best luck to you, thinking about you ❤️
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@Sylviequebecbc Thank you for the kind words. It has been life changing in some ways. I am not sure if you saw my post in the Teal Thursday posts. If not, here is the long and short. I went to my Oncology appt 2 wks ago. We were able to see the results of my normal 3 month CT scan and the specialized CT scan the surgeon had asked for. Both pretty much stated the same. I have growth and signs of progression as well as my left kidney is worsening as well. When I asked about my CA 125 levels I was shocked. They jumped from the 300's to the 600's. I was almost speechless when she told me. When I asked the famous question "What next". I was informed that I could try chemo if I wanted to but they really didn't have anything else to offer me. I have declined chemo as it will mess with my bloodwork, make my immune system tank and I will feel unwell for a good part of the days. There is no guarantee with LGSC that it will even work given the research on the subject. We discussed end of life and what that might look like for myself and what my wishes are. I am set if I run into a situation where I may have an irreversible bowel obstruction and how to get me from home to hospice for it. My wish is to not be in hospital at all. So, I am at peace knowing we have everything in place should that happen.
Looking back now and having time to process a lot of this, I am not so convinced about the immanency of it all. I know we didn't discuss the role that switching from Letrozole to Tamoxifen, to nothing for a few days and then back to Letrozole may have played in any of this. Not the growth/progression per se as it seems to be minimal on the scan but the jump in the CA 125 levels. I have since remained on the Letrozole and am taking Turkey Tail Tea daily. I may ask for bloodwork in the weeks to come. I have an appetite, energy and am feeling good in general. So, I embracing what is for now.
As for you, when did the bleeding start again? You were on a streak of no bleeding. I am saddened to hear it returned for you. How it the radiation going? I am thankful that they were able to accommodate you and adjust your treatment so that you are not doing all that travelling. Yes, I have heard from several ladies both with this disease and others with another type of cancer that the effects of radiation are cumulative and hit anywhere in the 7-10 day range. I don't know if that is good or bad knowing it is coming. Definitely lets one plan. I hope that whatever side effects come are manageable for you and not unbearable. Please keep us updated on how you are doing. I think of you often esp as we have the same type of cancer. Sisters of a sort….🤗
Wishing you minimal side effects and some joy/smiles in the days to come. Take care of you! 💕
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