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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).

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  • albertan
    albertan
    edited April 11
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    Thank you @Strongwoman for sharing. 3 years Post treatment I started to have urinary .Menopause symptoms and wanted to do something about it. Family doctor prescribed vagifem but I have to go to menopause specialist to get to estrogen.After of course getting ok  from oncologist AM NED
  • JoanEG
    JoanEG
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    @Strongwoman the doctor I am seeing tomorrow is filling in for my regular oncologist who is away.  I have spoken to him on the phone but have not me him in person.  My bff will come in it’s me for support.  The weather here today is cool they are calling for rain but so far just cloudy.  Tomorrow is supposed to be sunny and warmer.
  • Strongwoman
    Strongwoman Moderator
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    Ok @albertan please tell me if I am following this correctly, you were referred to the menopause specialist post treatment (so recently) and the family doctor in the meantime prescribed the vagifem.  From what I read it is a form of estrogen.  Are you wondering about taking this or about taking possibly something else to help with the symptoms you are experiencing? What does the Oncologist say or what their views are on taking medication with estrogen in it as it pertains to your case?  I am very curious and love learning from others experiences.  That combined with my work background has me very interested in everyone's experience.  Congratulations on being NED!  How does that make you feel?  There can be many emotions with it and it can take some time to process because it seems surreal in some ways.  We are all here for you and hope you continue to share your journey with us. <3  
  • Strongwoman
    Strongwoman Moderator
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    @JoanEG Good. I am glad your bff will be with you for it all.  I hope your appt goes well and your interaction with the "fill in" is positive.  I will be looking forward to hearing about your update when you are ready to share it with us all.  
    Here in most of Ontario there is to be rain until sometime tomorrow.  It is forecasted that by tomorrow our area may see 34-36mm of rain.  So it is pretty dull out and that is okay since we are doing a movie afternoon (my sons and I).  I am a little jealous of your sunshine and warmth...but will be patient as we are to get that this coming week again which will be nice.   :)
  • Lorraine5845
    Lorraine5845
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    @GloHo thank you for giving me All those trials and I showed him and went thru them but found out unfortunately none apply with my clear cell OC high grade .now I asked him for my clinical trial but even only 20 % usually eligible.  And even if I take the GEM no one ever had success with it but now he said u can be the one it works on
  • Keepcalmandbreath
    Keepcalmandbreath
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    Hello @Strongwoman- I keep admiring your strength and courage. While I don’t post much on this forum, I read every message and keep learning from you and other Teal sisters. Thank you for sharing your journey and being open with us. Just like everybody else I was very saddened to learn of your latest appointment outcome and the prognosis. That prompts me to ask you if anybody mentioned or suggested to you a drug called Octreotide that helps reducing gastrointestinal secretions and inhibiting gastrointestinal motility, thus controlling and reducing its output. I had my first bowel obstruction in December and had two more like bowel obstruction episodes since then. My palliative doctor felt that I was a good candidate for this drug as it’s supposed to keep those bowel obstructions from happening. I am getting a long release version of this drug, a monthly injection. I had my first injection about a month ago and will be getting a second one next week. Maybe you can inquire about it and see if it maybe helpful to you. 
  • GloHo
    GloHo
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    @Lorraine5845
    Sorry to hear none of the trials are for you. I was sure at least one of them would be a potential trial for you. When will you know about the trial you applied for? 
    Do you know if you have the ARID1A gene/protein/mutation? Approx. 80% of clear cell ovarian cancer have it. I have seen that mentioned a lot in relation to clear cell. 
    Has your Onc discussed any combo treatments with GEM [Bevacizumab (Avastin), Cisplatin]? Note: They may not be available or even an option. I know for high grade, there are some combos that I would be interested in but they are just not an option for various reasons. Clear cell may have a different set of rules. It may be worth asking about. 

  • Strongwoman
    Strongwoman Moderator
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    Lorraine5845 said:
    @GloHo thank you for giving me All those trials and I showed him and went thru them but found out unfortunately none apply with my clear cell OC high grade .now I asked him for my clinical trial but even only 20 % usually eligible.  And even if I take the GEM no one ever had success with it but now he said u can be the one it works on
    Good Morning @Lorraine5845 Although you are not eligible for the trials that the Oncologist took time to go through with you, it sounds like Gem may be an option for you.  How do you feel about taking it?  Was there anything else you were looking at or had seen on the site and wanted to ask about to see if it was a good fit for yourself?  
  • Strongwoman
    Strongwoman Moderator
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    Keepcalmandbreath said:
    Hello @Strongwoman- I keep admiring your strength and courage. While I don’t post much on this forum, I read every message and keep learning from you and other Teal sisters. Thank you for sharing your journey and being open with us. Just like everybody else I was very saddened to learn of your latest appointment outcome and the prognosis. That prompts me to ask you if anybody mentioned or suggested to you a drug called Octreotide that helps reducing gastrointestinal secretions and inhibiting gastrointestinal motility, thus controlling and reducing its output. I had my first bowel obstruction in December and had two more like bowel obstruction episodes since then. My palliative doctor felt that I was a good candidate for this drug as it’s supposed to keep those bowel obstructions from happening. I am getting a long release version of this drug, a monthly injection. I had my first injection about a month ago and will be getting a second one next week. Maybe you can inquire about it and see if it maybe helpful to you. 
    Thank you @Keepcalmandbreath  I appreciate your kind words.  
    No, I have not heard about that drug but am going to ask my Palliative doctor about it today.  I found some older studies that were on the internet.  They used ladies with MBO's (malignant bowel obstructions) in the trial and they sound promising.  I am curious about the long release injection that you have and the efficacy of it.  It is worth a discussion with my Palliative doctor for sure.  Thank you so much for mentioning it.  I will keep you posted as to the results of the conversations I have around it once I hear from them.  Thank you and I hope it is something we can look at,   <3
  • Strongwoman
    Strongwoman Moderator
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    GloHo said:
    @Lorraine5845
    Sorry to hear none of the trials are for you. I was sure at least one of them would be a potential trial for you. When will you know about the trial you applied for? 
    Do you know if you have the ARID1A gene/protein/mutation? Approx. 80% of clear cell ovarian cancer have it. I have seen that mentioned a lot in relation to clear cell. 
    Has your Onc discussed any combo treatments with GEM [Bevacizumab (Avastin), Cisplatin]? Note: They may not be available or even an option. I know for high grade, there are some combos that I would be interested in but they are just not an option for various reasons. Clear cell may have a different set of rules. It may be worth asking about. 

    I agree with @GloHo and her suggestions above for yourself @Lorraine5845 It sounds like they are definitely topics of discussion for sure.  Let us know how you make out.  
  • Strongwoman
    Strongwoman Moderator
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    Morning Ladies.  Thank you ALL for the beautiful and kind words you have written.  It is humbling to read them.  I have not given up yet.  I am asking about the drug that @Keepcalmandbreath mentioned to see if it is something we can try with myself and if not, why.  I will post what I find out.
    Yesterday, I went to see my sister but she was physically at the workplace and not working from home.  I sat and had a good cry with my brother in law and we chatted at length.  We have decided not to tell my sister until she returns from a work trip as she leaves on Sun and comes back on Fri.  I think that is fair so we are keeping it quiet with the rest of the family until then.  I don't want her finding out while she is away and has no support around her.  My family is slowly processing it all.  Heck, I am processing and planning at the same time.  Time to close up any loose ends and make sure my healthcare wishes will be followed through and not left for the family to decide.  They will be going through enough.  All the while, I am still planning outings with friends/family.  I am going to go stay with my elderly Aunt on Tuesday after she has her procedure to determine if they can go in and work on replacing her heart valves.  I am honoured that she wants me to come and stay with her. We have travelled together before and stayed in the same room so we know we are compatible for this type of thing.  We have a special relationship between us and am thankful for it daily.  
    On another note, I am going to look into ways we can start working on that collaborative book and to make sure that Marianne can continue on with it, should anything happen with me.  I don't want it to not be followed through with in that case.  I very much want to see it finished and out there.  I know you ladies who are interested in this, can do it!  I will post more on that separate topic later.  
    For all those out there today. Enjoy your day.  I am off to do some art work at Hospice and then meet up with a friend and then back to see her baby today.  Then home to spend some time with my boys.  
    How are you all spending the day?
  • Lorraine5845
    Lorraine5845
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    @GloHo @srongwoman some they can’t give because I already had that treatment. Next is the gemcitabin after its taxol and avastin. Either way not great results
  • GloHo
    GloHo
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    @Lorraine5845
    Hi. Just read an article that Beva + chemo has benefits for clear cell 
    https://pubmed.ncbi.nlm.nih.gov/32651885/
    This supports your Onc’s next step in treatment after Gem. 

    @Strongwoman
    I also saw a couple of articles regarding Beva + chemo for low grade. I know you indicated you do not want chemo…and this may be something you already discussed with your Onc…just wanted to mention it. I have included the links here for low grade Teal Sisters who may be interested.

  • Bojenka
    Bojenka
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    @Strongwoman…I would like to add to the many accolades that have been written for you. 
    For me also you have been amazing and a model, truly.  I really enjoy your informative posts. Well researched and presented.

    As far as my journey… I am on maintenance chemo or palliative chemo as the new trainee doctor said on our last meeting.
     Bloodwork numbers are good at the moment but how long they will be good doctors don’t know , well no one knows.  
    So I am trying to balance quality of life  between treatments/disease with couple of weeks feeling well.
      CA 125 just doubled from 69 to 139, worrisome to me and my husband in particular.  Pain in right flank and back, arm is increasing so is pain medication dosage as well.  So my guess is disease is progressing.  I too am thinking of contacting a Hospice in Kitchener, Cambridge area  
    I  am thinking Guelph would be too far.  
  • Hooodith
    Hooodith
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    @Strongwoman hello, I wrote a long personal email to you. In the middle of writing it, it disappeared. Did you get it? It is not showing up anywhere.

  • Strongwoman
    Strongwoman Moderator
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    Hooodith said:
    @Strongwoman hello, I wrote a long personal email to you. In the middle of writing it, it disappeared. Did you get it? It is not showing up anywhere.

    Good Morning @Hooodith No, I did not receive anything from you and have checked the spam folder as well and there is nothing there.
    There is an issue with the platform using phones to communicate. If you type a message using your phone it is disappearing.  Marianne is aware of the issue and is working diligently with our platform carrier to resolve this issue.  If you type it on a computer, this does not occur.  I am deeply sorry that this happened for you after taking the time to type out something so personal.  Thank you and we will chat lots more.  <3
  • Strongwoman
    Strongwoman Moderator
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    Bojenka said:
    @Strongwoman…I would like to add to the many accolades that have been written for you. 
    For me also you have been amazing and a model, truly.  I really enjoy your informative posts. Well researched and presented.

    As far as my journey… I am on maintenance chemo or palliative chemo as the new trainee doctor said on our last meeting.
     Bloodwork numbers are good at the moment but how long they will be good doctors don’t know , well no one knows.  
    So I am trying to balance quality of life  between treatments/disease with couple of weeks feeling well.
      CA 125 just doubled from 69 to 139, worrisome to me and my husband in particular.  Pain in right flank and back, arm is increasing so is pain medication dosage as well.  So my guess is disease is progressing.  I too am thinking of contacting a Hospice in Kitchener, Cambridge area  
    I  am thinking Guelph would be too far.  
    @Bojenka Thank you.  Your words are so heartfelt.  It is difficult this balancing act, isn't it?  If you haven't already, tap into the blog of The Waiting Room that I posted earlier and learn from their book.  They have really good info that will help you along your journey.  One of the lady's from my Palliative Group ended up in a Hospice in your area and it was nice.  I know this because the one's that run and volunteer for my group went over to visit her there.  Please be assured, if that is what you want that you will be in good hands.  I would also ask if there is a program in place in your area that if an ambulance is called that they will bypass the hospital and take you to Hospice instead.  I am in the process of getting that paperwork done as well.  Inquire about it with your team co-ordinator or physician/Oncologist.  If pain is becoming an issue, speak to your team.  I am positive you have lots of options left on the table yet.  Making sure you are comfortable is key.  Hope this helps.  Sending you hugs.  <3
  • Strongwoman
    Strongwoman Moderator
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    GloHo said:
    @Lorraine5845
    Hi. Just read an article that Beva + chemo has benefits for clear cell 
    https://pubmed.ncbi.nlm.nih.gov/32651885/
    This supports your Onc’s next step in treatment after Gem. 

    @Strongwoman
    I also saw a couple of articles regarding Beva + chemo for low grade. I know you indicated you do not want chemo…and this may be something you already discussed with your Onc…just wanted to mention it. I have included the links here for low grade Teal Sisters who may be interested.

    Thank you @GloHo I did look up those both and will think on it over the coming days.  I am still fairly certain I don't want to but may call my Oncologist and ask about it and outcomes etc to definitively make a decision.
    Yesterday, I told my 2 best gf's the news yesterday and thusly had quite an emotional day.  I wanted to tell them in person and am glad I did.  We are all hopeful that I will have many more "good" days together before anything takes a turn.  All we can do is HOPE! <3
  • Strongwoman
    Strongwoman Moderator
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    Lorraine5845 said:
    @GloHo @srongwoman some they can’t give because I already had that treatment. Next is the gemcitabin after its taxol and avastin. Either way not great results
    So @Lorraine5845 the question remains with you: "What do you want to do versus what you don't want to do?"  That is what you might want to ponder and reflect.  Your answer will be there, give it time, process and research.  You will know what to do and is right for your journey.  Be patient.  Be kind to yourself and decide what it is you want and how you want things to be. That is what is paramount in our journeys. 
    We are here for you whatever you decide.  <3
  • Strongwoman
    Strongwoman Moderator
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    Strongwoman said:
    Keepcalmandbreath said:
    Hello @Strongwoman- I keep admiring your strength and courage. While I don’t post much on this forum, I read every message and keep learning from you and other Teal sisters. Thank you for sharing your journey and being open with us. Just like everybody else I was very saddened to learn of your latest appointment outcome and the prognosis. That prompts me to ask you if anybody mentioned or suggested to you a drug called Octreotide that helps reducing gastrointestinal secretions and inhibiting gastrointestinal motility, thus controlling and reducing its output. I had my first bowel obstruction in December and had two more like bowel obstruction episodes since then. My palliative doctor felt that I was a good candidate for this drug as it’s supposed to keep those bowel obstructions from happening. I am getting a long release version of this drug, a monthly injection. I had my first injection about a month ago and will be getting a second one next week. Maybe you can inquire about it and see if it maybe helpful to you. 
    Thank you @Keepcalmandbreath  I appreciate your kind words.  
    No, I have not heard about that drug but am going to ask my Palliative doctor about it today.  I found some older studies that were on the internet.  They used ladies with MBO's (malignant bowel obstructions) in the trial and they sound promising.  I am curious about the long release injection that you have and the efficacy of it.  It is worth a discussion with my Palliative doctor for sure.  Thank you so much for mentioning it.  I will keep you posted as to the results of the conversations I have around it once I hear from them.  Thank you and I hope it is something we can look at,   <3
    @Keepcalmandbreath Thank you and I wanted to update you. I asked my Palliative doctor about this and she said she didn't think it was for me but didn't elaborate. She also said she would check with some specialists and get back to me.  So, although it is not a firm "no" I will take it as a no so I don't get too hopeful about it. Thank you for sharing that info and it is sad it is not an option for me.  I am thankful it is working for you and will continue to do so.   <3
  • Strongwoman
    Strongwoman Moderator
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    Good Morning Ladies!   How has the weekend been for you?
    I have made pancakes for the fam this morning.  I ate one and that was enough for me.
    Here we are in and out of rain and now the sun is trying to shine through.  We will see if it lasts but will embrace what sunshine we are given.
    I started looking into Traditional Chinese Medicine last night.  I figure I have nothing to lose now I am in this spot regarding my journey.  I am still taking my Letrozole and turkey tail tea.  I had read research papers on some chinese medicine for Ovarian cancer which sounded promising.  I then got thinking, why guess.  Why not go to someone who has experience in this.  I contacted someone locally and they referred me to a place in Richmond Hill.  I have contacted them and will wait to hear a response.  I am reaching out today to one in Ingersoll and waiting to hear back from one in Cambridge.  I will base my decision on who I might see by what they send back and how soon they can get me in.  If by listening to my body and all it has indicated thus far, it truly does not like conventional medicine and has been rebelling.  So, why not try some eastern medicine and see what happens.  I can call in and ask for bloodwork to be done anytime I want. Knowing that is hopeful and will also allow me to see how perhaps something is or isn't working.  The turkey tail tea was not ingested enough for the latest bloodwork and why I haven't given up on it.  I am still hungry so that is a good sign.  Sleep is off but that could simply be due to stress.  It is nice that we decided to take the weekend off from telling people. I think we all needed it.  Time to go back to a new norm and just be as a family.  
    Well, I am going to go now as I have some artwork I want to get started on this morning while I feel like I still have the creativity to do so.
    Chat soon ladies and I would love to hear how everyone is doing.
    @babs272 How are you?  You were experiencing some issues last time you were on.
    Thoughts and peace is what I extend to @Eileen and @HoldingOn wherever they are in their journey.  <3

  • JoanEG
    JoanEG
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    @Strongwoman as always your words and positive energy inspire me, thank you!  It is going to be another lovely day here on Vancouver Island so I hope to spend some time outdoors.  I have my husband’s family coming for coffee this morning.  Today would have been his 76th birthday although I’m sure none of his family even remembers as unlike my family they were not close.  
    I saw the oncologist on Friday and I will be getting two more rounds of chemo.  The first will be this Wednesday and thankfully will be here in Duncan.  He made sure I was follow the low residue diet and said my magnesium levels are slowly coming up and to keep take my supplements.
    Also I was excited to discover that my hair is starting to grow back only to have that balloon deflate when I realized I was now going to be having more chemo.  Oh well, I have a lovely sun hat 👒.  Just because I have been given a cactus doesn’t mean I have to sit on it!
  • Strongwoman
    Strongwoman Moderator
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    Ahh thanks @JoanEG
    That is sad that his family may not remember.  It is one thing we don't pick, isn't it?  Family.  Thankful that you and your family are close and can remember.  <3
    Two more rounds isn't too bad is it?  Glad he is happy with the low residue diet. How are you finding it?  I, too, keep taking my supplements, protein powder and veggie green powder daily.  I have been uber careful with my diet given my recent news.
    Ah yes, our crowning glory....our hair.  That must have been disappointing nonetheless. You do have a good outlook on it and some terrific sayings.  Hopefully they will get you through this part.  All of it is a process that is for sure.
    Enjoy your time with family and I wish you well this Wednesday.  
    Take care of you!  <3
  • BellaDonna1959
    BellaDonna1959
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    Reading on a FB cancer group that another woman passed away from a bowel blockage, I was interested in finding some preventative stuff online.  I found this site that offers treatment in N. America without surgery - I did not delve into it because I am interested in prevention only at this point.  I found a fantastic and comprehensive anti-blockage diet download on the site and thought it might be helpful and interesting to those of you who are dealing with this issue.  Of course, a lot of things on the 'do not eat' list is exactly what I do eat - lots of veggies and nuts and seeds and breads filled with fiber.  But I think the book will be very helpful as it goes into a lot of detail about what to do when and why.  Hope you find it interesting.  https://clearpassage.com/diet-guide-for-avoiding-bowel-obstruction/?_gl=1*17okuoy*_up*MQ..&gclid=CjwKCAjw_e2wBhAEEiwAyFFFo4JBlRVJRB2rb-95CMWzNsj7iaR_-
    A3OJzvYPSmnX1CfktVUAbnq2RoCGOEQAvD_BwE
  • Keepcalmandbreath
    Keepcalmandbreath
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    Hello @Strongwoman - thank you for your update; I was hoping the answer would be different but maybe “some specialist” think otherwise; let me know if you hear anything new.
  • Strongwoman
    Strongwoman Moderator
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    https://ovdialogue.ovariancanada.org/discussion/comment/13802#Comment_13802

    Good Morning @BellaDonna1959 Thank you for the info. It reinforces what I have already put up for the ladies on the Low Residue Diet. Only exception is the one you have posted includes transitioning to a regular diet which for many of us will not be a reality. I move through all the phases depending on the day and am okay with that. I miss food immensely but it isn't the risk for myself. For those of us who have to maintain this diet this is preventative for us. If you have not had a single bowel obstruction, you may not understand but it is something you don't want to go through again, that is for sure. This new way of eating has been very difficult for me as I have always been healthy and ate healthy. So to revert back to white bread, juicing, broths, etc has been hard. I miss having a salad, raw or cooked veggies, my fruit, nuts, olives, pickles and many other things. But the pain from the obstruction and what it can mean for me now is not worth eating any of it. Just a new part of my new reality and journey. Accepting what is and not fighting it.

    Keep on fighting on your end @BellaDonna1959 💖

  • Strongwoman
    Strongwoman Moderator
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    Thank you @Keepcalmandbreath for the encouraging words. I will keep you updated. I am doing okay this week. Yesterday I cleaned most of the day and this morning, I have made my bed, done 2 loads of laundry, cleaned my bedroom windows and am now working on catching up here. I plan on going outside a bit today to work on my gardens a little before my nurse comes. A little at a time and variety is the spice of life they say. 😉

  • BellaDonna1959
    BellaDonna1959
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    I hear you about the diet @strongwoman - I would miss all those healthy foods too! Did you take a look at the treatment itself? Would this be something you'd be interested in? I only took a short look at what they do there and a quick peek at the research behind it which looks promising. It is something I would consider if my team in Canada couldn't clear a blockage. I agree that if I had no choice but to eat in a certain way to keep going, I would do it for sure. I did look at what a blockage is, what it looks like etc on their site and I felt more prepared to deal with it should it happen. Wishing you all at the best and no more blockages for sure.

  • Strongwoman
    Strongwoman Moderator
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    https://ovdialogue.ovariancanada.org/discussion/comment/13810#Comment_13810

    Thank you and yes I did. Mine aren't solely scar tissue causing the blockages but the actual tumours in multiple sites. There is no healthcare professional that can manually make them go away. I am exploring Traditional Chinese Medicine while I continue to take my Letrozole and turkey tail tea. I am not done looking into some options that are not conventional. I choose not to do chemo as it will mess with my bloodwork, cause my immune system to tank and have more bad days compared to the good I am having. I will deal with my diet for now. Blockages aren't just scar tissue as they have indicated on their site. The tumours are a reason as well. The testimonials are there to entice people to try their therapy. I was in health care and know how to read beyond some things. Lots of sites look promising and anything I think may help, I run by my Palliative doctor who is amazing and honest with me. Thank you for the well wishes and I, too, hope I experience no more blockages.

    Take care @BellaDonna1959

  • GloHo
    GloHo
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    @Strongwoman

    I am interested in hearing more about TCM and what options are available, for what purposes and what you will be considering for yourself.
    Sounds like you have great energy!

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