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  • Readersmaven
    Readersmaven
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    @KarenBemi thanks for the reminder about Healing Journey program through Wellspring. I'm going to follow up on their programs.
  • KarenBemi
    KarenBemi
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    @BeamBlossom I am doing it through zoom.  All of their programs are on zoom.  I do that one, the Ladies group and the Gyne Group all through zoom.
  • Rad
    Rad
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    @KarenBemi .The Carbo Taxol not too bad, first 5 days after chemo not the  greatest but then it gets better after that.

  • BeamBlossom
    BeamBlossom
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    @KarenBemi - that's awesome, I should look them up again, they were shutting down just as I entered treatment, and I didn't get back to them to see how they were going forward with programs in this covid world
  • KarenBemi
    KarenBemi
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    @BeamBlossom , I am sure if you contact Hearth Place, they can get you into a program.
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @KarenBemi is that resource restricted to those who are being treated at Sunnybrook or live in the east Toronto area? We're trying to build a tool kit of available support resources out here in SE Ontario and so far nothing like that here.
  • KarenBemi
    KarenBemi
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    Actually, I have a question for you ladies.  So, I was also on the Carbo Taxol.  I had some moderate Neuropathy in my feet (less in my hands) but it still hasn't completely gone away.  Did any else experience this?  My question regarding it is, did you find it worse in the mornings?  I have a hard time with my feet in the mornings.  
  • KarenBemi
    KarenBemi
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    I don't believe so.  But, I can certainly ask what their geographic limitations are.

  • BeamBlossom
    BeamBlossom
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    @KarenBemi - I have mild neuropathy in my feet only and yes, it is worse in the mornings for sure. A heating pad under your bottom bedsheet might help. 
  • cbot
    cbot
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    @KarenBemi, I also have some residual neuropathy, especially in my feet. For me, it is worse at night when I am trying to fall asleep. It seems to be improving slowly now that I have finished with the Carbo Taxol (7 weeks now).
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @KarenBemi if there's one thing I'm concerned about going back into chemo is whether it will make the neuropathy that never completely left get worse.  For me it's mostly numbness in the bottoms of my feel and my lower legs. Some pain if I step on even the tiniest thing. And burning at the tips of my toes.  It must be Carboplatin related since I didn't have Taxol. I was allergic and had Gemcitabine instead. And yes, worse when I first get up. Once I've been moving around for a bit it gets better.  I've started taking B12 based on recommendations I've heard from gals on this site. My oncologist says there's no data to back up it's impact on neuropathy but won't harm me so I'll give a try.  
  • Readersmaven
    Readersmaven
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    @KarenBemi I have neuropathy in my feet  (almost gone in my hands!) and for me end of day is the worst...guess we're all different. I picked up a CBD bath bomb a couple of days ago and plan on trying it in a foot soak. Fingers crossed for even a bit of relief.
  • Rad
    Rad
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    @KarenBemi.I have finished 2 rounds of  Carbo Taxol and the first 5 days I get Neuropathy in my fingers and toes and then it's gone.I also get aches in my legs in the night, I have tried using and electric blanket for my legs and it seems to help.
  • KarenBemi
    KarenBemi
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    Thanks for the info ladies on the feet.  It is something that has been bugging me.  I tried to talk to my doctor about it last time but then she distracted me with the dirty talk of underwear (she told me on my dr visits that i should wear dark underwear because I am always going to get an internal)...it got me laughing so hard that I forgot about my feet.

  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @KarenBemi...it's ok. Checked the website and it's open to those in Durham region.  Too bad. We could sure use something like that out here so maybe we can use it as a bit of a model to build something.  
  • Readersmaven
    Readersmaven
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    @Fearless - Vol Mod like you neuropathy is front of my mind for whenever I have a recurrence. It was pretty bad for a while but I guess it just comes with this journey. Good luck to you...did you try icing?
  • cbot
    cbot
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    I know we're switching back and forth between topics, but @Fearless - Vol Mod, I have accessed Wellspring's programs from here in Windsor ON through the following link: https://wellspring.ca/online-programs/
  • BeamBlossom
    BeamBlossom
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    @KarenBemi @Fearless - Vol Mod @Rad - I was advised to take Alpha Lipoic Acid and rub Frankincense & Myrrh healing balm on my feet every night. I think these are effective as I was starting to get neuropathy in my fingers around my 3rd treatment and managed to avert that with these and the icing during treatments.  
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @readersmaven no. I wasn't aware of the icing solution until just recently so am going to try that, along with massage and the B12.  Hoping I can mitigate any further damage and may be even improve my current state...even a bit would be so nice. 
  • Readersmaven
    Readersmaven
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    @BeamBlossom did you order rub online?  If so from where? I'm trying to be prepared, is that crazy? Makes me feel more in control if I'm planning...LOL
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    @cbot I'll look into Wellspring too. Perhaps now that so much has moved to online the old geographical boundaries or hospital affiliations no longer apply. As mentioned we have absolutely nothing out here, yet a territory that goes from Port Hope to Brockville.  Thanks for suggesting that.   And @BeamBlossom thanks for those recommendations for the neuropathy. I'll look into them.  
  • Rad
    Rad
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    Thanks ladies for all the helpful information .I look foward every week  to this group because I always leave  feeling that I  have learned something new.Have a great weekend!
  • BeamBlossom
    BeamBlossom
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    @Readersmaven - Nope not at all crazy, if it helps, go for it I say. I order the balm which is under a brand called Wisemen on Amazon, it comes from the US and takes 2 or 3 weeks to be delivered. 
  • Fearless_Moderator
    Fearless_Moderator Moderator
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    Well everyone, it's now after 2pm and this has been another great discussion. Selfishly I've gotten a lot out of it today so thank you for all the support and suggestions.  

    I'm signing off now but looking forward to next Thursday already. In the meantime, keep up that holiday shopping, keep up those spirits of yours, and all stay well and safe.

    Big virtual hugs to all of you.   <3
  • BeamBlossom
    BeamBlossom
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    Note to all in active treatment, Alpha Lipoic Acid is an anti oxidant and it is likely that your cancer treatment team will advise against taking any anti oxidants 3 days prior to and 5 days following infusions. You should check with them before taking any antioxidants.  
  • BeamBlossom
    BeamBlossom
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    So long for now everyone!  Have a hopeful, optimistic and safe week! 
  • Readersmaven
    Readersmaven
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    @BeamBlossom... if you have a link that you could share to Amazon,  that would be great. Took a quick look and I'm not finding it. Thanks!
  • cbot
    cbot
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    Hi @Readersmaven and @BeamBlossom. I found the link for the Wisemen balm:
    https://www.amazon.ca/dp/B01BW9YW9C/ref=cm_sw_r_cp_awdb_imm_t1_HgBRFbGYSZ2RZ
    I got some a while ago and it seems to be helping!
  • KarenBemi
    KarenBemi
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    Hey Ladies.  I can't remember if it was this week or last week that i mentioned about Hearth Place Cancer Support Centre in Oshawa.  I have been in contact with the director  regarding geographical access... Here is her response...

    When we were physically open and seeing folks, the answer to your question would have been that we are available to anyone who could come to the centre.  Now that we are closed, and have moved online, our reach is a bit farther!  Technically, using Zoom, we could help anyone with a cancer diagnosis.

     If your facilitator wishes to connect with me directly, please feel free to share my contact details with her.  

    If anyone wants further information, her email is :  stephanie@hearthplace.org  She can direct you to programs or services that will benefit you.  As I did mention, they do have a group specifically for Gynaecological Cancers.  As well as a ladies only group, etc, etc....They even offer the Healing Journey Program.  All online.

  • Readersmaven
    Readersmaven
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    @KarenBemi thanks for the info. Another good source of programming, including Healing Journey, is www.wellspring.ca 

    Hope everyone is having a good week, my CT scan is tomorrow so I'm trying to stay busy and not give into scanxiety. Been doing some online Xmas shopping!

    Wanted to get my msg online a bit early as I have to log off early today.

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