Looking for any Clear Cell Carcinoma Sisters! (Ontario)

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  • I’m glad you are well , thank you
  • ha no worries, stage 2.  Happy to lend some support.  I certainly got my share, it is so important and makes all the difference I think to chat with someone who has gone through the same fears, process etc.  Please feel free to ask whatever you need.  I will be happy to share what I can.
  • thank you I will
  • Just wondering when you were going for chemo did you do a special diet or avoid certain foods or are you a healthy eating person 
  • Also did you get mouth sores and pains I. The legs that they talk about . I bought stuff to be prepared or it comes later maybe ?
  • edited February 9

    @Twilight63 going to send you a private message so we don't fill up this board.


  • Sounds good
  • Where do I get the message from , never have done 
  • Where do I get the message from , never have done 

    by your name at the top, the second icon is your message inbox.  Click on that.
  • @sherriann33 and @Twilight63 it looks like the two of you have found very solid common ground. That's wonderful and hopefully some other clear cell survivors will add to this conversation.  Please don't worry about going to private messaging. We don't care how full this discussion topic gets with the back and forth. And your discussion can often be helpful to others down the road.  Good luck to both of you....
  • thank you , my issue now is I developed a rash and am taking dexamethazone and it is making me restless , and depressed . I was starting to not have such high anxiety and it is all coming back . I will hear from doctor tomorrow but do you have any suggestions or ideas as to what I can do .
  • @Twilight63 Below I've copied and pasted some pertinent info from a friend who suffers from skin rashes...she believes a product of either Caelyx or Avastin but no one has been able to pin point the source. But here is what she experiences and what she does to try to mitigate the discomfort.  As for the dex....we all react differently to it but what you're experiencing is a common side effect. Make sure your oncologist knows...he/she may want to switch you out to some other drug or lessen the dose. I don't get anxiety but I do turn into a raving witch for about 24 hours after taking it.  My husband has learned to run for the hills on Day 2 LOL.  
    Extract below: 
    I had been warned about a midriff rash under your breasts & sure enough I had a pimply rash come & go during cycle 4.  I used a ton of creams, mostly Glaxol Base but eventually found Penaten cream for diaper rash worked well.  This rash has not come back but a few spots sometimes appear & I put on Penaten & they go away!  Very happy about that. 

    Keep your hands & feet slathered in a good lotion several times a day.bI have tubes & pots on every table. Vaseline covered by cotton socks every few nights helps my dry feet.  Shower, bathe & wash in cool water. Heat brings chemo to surface of skin.  My hands feel a little tight in the morning & somewhat numb so it is probably a little neuropathy.  Cold relieves this hand side effect so I grasp onto a cold jar or can for a few minutes in the morning.  Problem solved.  

    When I read this over I hope I haven’t over whelmed you. This is my experience & I wouldn’t change my treatment.   What I’ve learned this time is be proactive & don’t wait for a side effect.  I should add my oncologist has reduced my dose of Caelyx slightly to help with any of these side effects.  

    PS. I forgot to mention I was prescribed 25 mg of Vitamin B 6    six times a day since my first chemo.  Two in morning, at  noon & at night.   For hand & foot skin  issues.   Seems to be helping. 
  • @Twilight63
    I had a hysterectomy in Nov. 2016, due to large ovarian cysts. I was diagnosed with stage 2 ovarian cancer, with adenocarcinoma and clear cell. I had 6 intra-venous chemo treatments (Carbo-Taxol),  and 25 radiation sessions.  My blood tests show no evidence of disease.
         
    During the first hour or so of each chemo, I had the most annoying restless legs, and the nurse said that must be due to the steroids, the dexamethasone. I would get out of the chair and stand there doing demi plier - stretch - rise- lower, from ballet class. 

    During chemo number 4, they stopped the chemo part way through as I had a rash all across my throat and upper chest. After about 40 minutes, they started it again, but the drugs were going in more slowly. I never had a rash after chemo.

    My skin became more sensitive after radiation and everything was all finished. So when I started colouring my hair again, and did the skin allergy test,  I had to change hair colour brands a couple of times, as my skin went red inside my elbow, where I tried out the colour mixture. Well, now that I think of it, before having cancer, I probably never bothered with the allergy test recommended on the hair colour of instructions. 

    Good luck Twilight63 and please keep us posted on what's happening. 
         
         
  • @sherriann33, did you have a lot of aniexty at the beginning and if so how did you handle that ? Does it get better ? I understand stress is not good but I am having a hard time with it . I kind of was better and this rash just heightened it . Any help would be good . I read where someone had the same as me and she didn’t do chemo . I have also heard that chemo can be resistive so I guess that is what scares me.
  • Also I am wondering you had extra treatment and I’m wondering why , is it something I should look at or is it the situation that makes the difference ? I realize you can’t say medically but I’m just wondering and when it comes to eating habits I’m avoiding eating certain foods and stopped coffee . Am I overthinking everything ?
  • Twilight63 said:
    @sherriann33, did you have a lot of aniexty at the beginning and if so how did you handle that ? Does it get better ? I understand stress is not good but I am having a hard time with it . I kind of was better and this rash just heightened it . Any help would be good . I read where someone had the same as me and she didn’t do chemo . I have also heard that chemo can be resistive so I guess that is what scares me.

    Hi @Twilight63 .  I did have anxiety for sure.  I know we all cope differently.  For me I tried to deliberately not read too far ahead in terms of what ifs.  I stuck to what I was experiencing in the moment and tried to deal with it as it comes.  I was lucky my rash only lasted the first treatment, I took some benadryl, it helped a bit, but I only did that after consulting with my healthcare team.  I am not sure where you are getting your treatment, mine was at Princess Margaret in Toronto.  I found that they were very responsive when I left a message on their helpline.    In terms of foods, I tried to eat as healthy as possible especially on my good days.  On the days I was feeling flu like or had that metal taste in my mouth, I ate whatever masked it (I think I mentioned chocolate milk help that for me and I did eat some doritos as the flavour help hide metal taste as well).  I didn't eat those excessively and only when I was having a hard time eating anything.  I think we all need to try to find what works best for us.  I drank a lot of sugar free gatorade after treatments and used the caffeine free Nuun hydration tablets.  I moved to decaf coffee while I was doing chemo.    I tried to eat lots of veggies and fruits, soups etc.  I would try to listen to what your body needs and not be too rigid as to "what everyone else is telling you to eat".  Stay hydrated, eat as healthy as you can, don't beat yourself up when you can't.  Be kind and soft with yourself.  Try to take it one day at a time, one treatment at a time.  Try to stay positive, you are stronger than you think!

  • Thanks for the input
  • Just wondering when you lost your hair did it bother you . I said to myself it is not important and yet now that it is happening I just started to cry so hard . It’s not the hair but the reality of it I think . 
  • @sherriann33 , I didn’t add your name before so I hope you see my messages
  • Just wondering when you lost your hair did it bother you . I said to myself it is not important and yet now that it is happening I just started to cry so hard . It’s not the hair but the reality of it I think . 
    Hi @Twilight63.  My hair started to fall out a few days after my first chemo.  I thought it would have been later.  It came out in patches, I had my daughter shave it off.  I was a bit freaked out at first for sure, it was hard but I actually learned to love it.  I bought a wig but really only wore it a few times.  I felt like I was wearing it for everyone else's comfort rather than my own.  I embraced toques (I actually slept with one at night because my head was cold) and wore hats etc in the day when I felt like it.  Most of the time I went around just as is.  The eyebrows bothered me more I think.  I wear glasses so it kind of hid that but when it was just me, looking in the mirror, that was harder.   The thing with the hair, eyebrows etc, it all comes back.  It is only temporary.  You can do this @Twilight63.  Sending you a big hug.

  • Thank you for the hug . I didn’t think it would affect me but I have to accept it.
  • Re:  Just wondering when you lost your hair did it bother you . I said to myself it is not important and yet now that it is happening I just started to cry so hard . It’s not the hair but the reality of it I think . 

    I remember it so well.  I didn't want my husband accompanying me for a wig fitting prior to chemo thinking I'd be too emotional and me being me just wanted to deal with it and not wanting to explain my feelings. 

    Fortunately he insisted and I met the wig angel who cut my hair, fitted me and gave me a calming sense of purpose.  My hair fell off shortly thereafter.  It was horrible, expected but still surreal. 

    Being the vanity queen that I am  I researched alternatives and made my head coverings as attractive as possible.  youtube is a great resource in this regard.  Try this tutorial for a start, it'll uplift your spirits and make you look great too:


    I also got my eyebrows microbladed/tattooed by an artiste.  They looked so good that when I woke up from surgery the first thing I saw was my ICU nurse staring at me and asking me where I got it done.  

    Big hugs and do things that make you happy!!!  


  • The dollar store is great resource too...
  • @Annie1950 . I see you were up early and that happens to me . I go to bed at 10:30 and awake at 4 . I have a sleeping pill but it is not helping . When were you diagnosed and have you figured a way to get sleep ? 
  • @Twilight63 have you found that your sleeping issues started after treatment? It could be the chemo or the meds you take before chemo (ie. dex). Menopause can also cause sleeping issues. If your mind is racing during the night and you can't get to sleep or are waking up thinking about things, I found it helpful to keep a journal beside my bed so I could write down anything that was bothering me. That way I got it out of my head instead of tossing and turning all night thinking about it. While I didn't do this during treatment, I have recently started meditating. I know it's not for everyone, but it's helped my anxiety immensely. I use a free meditation app called InsightTimer. 
  • Thanks I will check that out and yes it is from the whole ordeal.
  • @Twilight63 I was diagnosed February 28, 2020 with Ovarian cancer that had metastasized to my omentum.  Chemo started a month later and debulking surgery followed after the fourth round of chemo.  In total I had eight rounds of chemo which ended four months ago.  Sleeping was very difficult I was prescribed sleeping pills that gave me four hours sleep each night at the most.  My friend Dexi didn't help in the matter either.  

    It does get better over time and for me playing relaxing music really helps.  I wish I could be of more help.

    I hope you had a better night sleep:)


  • Yes I am taking sleeping pills also but only 4 hr sleep . I have the same issue with dex.
  • @Twilight63 , hello.  I was diagnosed at 61 with Stage 1C Clear Cell after my hysterectomy in Jan 2016. The pathology showed the tumour had breached with the possibility of cells spilling into my abdomen. The oncologist suggested 6 rounds of chemo, carbo/taxol. I am now four years NED and looking forward to more continued good health in the coming years. Like every other woman diagnosed with Ovarian, or any cancer, the disease consumed my thoughts and my life. The further away I get from diagnosis and treatment, I find my life is returning to normal, albeit a new normal as a cancer survivor. It's amazing to realize how much strength we do have within ourselves. Our bodies are much more resilient than we think they are - but we have to give them time and what they need to heal.
  • @kastoyles , thank you for telling me because the stress and anxiety is horrible . 
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