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  • Hooodith
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    Called the ambulance yesterday evening because of worsening abdominal pain. Only waited 2 hrs to see a doc. Then another two hours to get painkillers IV. But got bloodtests and a catscan. Showing absolutely nothing. No lumps, bumps, no diverticulitis no appendicitis. Organs looked fine. They booted us out too late to get the last ferry so we had to fork out for a hotel room. But it was a/c and quiet and comfy. So I didn’t mind too much. Have to assume its constipation so I am working on that now. But the good thing was getting the scan that showed no problems. I have been off chemo for five months and it is good to know nothing has grown. It was a neck to groin scan. Of course, I don’t know what my numbers are, but I have a normal blood test next week.
    @Joan eg, lovely pics of the wedding, such a beautiful bride. Is she tall, or are you quite short? Lol

    Could someone tell me what chemos are platinum?

  • JoanEG
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    @Hooodith I hope you feel better soon! The scan results are the silver lining in that dark cloud! As for my granddaughter and I, she is indeed tall (5’11”) and I am short (5’ 1”). 😊

  • Bojenka
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    Hi @jmbarrhaven

    I finally, after 3 years had an allergic reaction (heaviness on the chest during infusion) to platinum based drugs, specifically it was cisplatin. My oncologist prepared me for it. And we discontinued the infusion.

  • Bojenka
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    Hi, @Bojenka here

    I had a very long wait for the clinical trial at PMH without treatment. We are afraid about disease progression, judging from my symptoms.

  • @Hooodith any chemo drug that ends with "platin" such as carboplatin and cisplatin contains platinum.

  • Hooodith
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    @jmbarrhaven thank you for that explanation. As I had carboplatin with no problems, does that mean I am not allergic to it and/ or never will be?

    @JoanEG that is a major difference in height. I am 5’10’, but all my rellies are equally tall or taller. Except my little Phillipina d.i.l. She always gets pushed to the front in family pictures or she would disappear. But she has a heart as high as the sky.

    Last night in emergency I was overcome with emotion. I find it so wonderful to be surrounded by so many helpers. So many human beings dedicating their lives to helping sick people, and so caringly and respectfully. I wish I could tell them how much that means…

  • JoanEG
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    @Hooodith it’s always nice when we are cared for kindly and respectfully. I’m glad that was your experience. 🫶

  • @Hooodith There are two different outcomes. You can eventually become allergic to a drug you have taken successfully before. Also a drug that had worked can become ineffective. That's called resistance. Either way that drug is no longer of use in your treatment.

  • Bojenka
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    @GloHo

    Congratulations… that is good news.

    How long have you had the pleural effusion? My oncologist says that I have liquid on lungs but not to worry about it , Is shortness of breat a symptom? Advance thank you for replying.

  • melissa
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    @GloHo that is fan-frickin-tastic news! About the pleural effusion decreasing.. must mean the trial drugs are working after all. Sending hugs!

  • Hooodith
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    @gloho yes, great news. It means something is working . My pleural effusion disappeared during my first chemo. Its now a baseline for me to determine progression, if any.

  • GloHo
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    Thanks. It was quite the surprise that it decreased!!
    @Bojenka
    I had a small pleural effusion earlier in my journey and it went away. This one was small in March and then small-moderate in May to almost gone in July.
    Symptoms can include shortness of breath, coughing and chest pain. I did not have any symptoms.
    @Hooodith @melissa
    Geez! I never even connected the drug to the decrease! That would be nice!!
    Since the pleural effusion developed while I was well into the trial and on this drug - not sure that the drug can be attributed to the decrease?
    I noticed that my albumin count has gone from consistently being on the lower end of normal to being a bit higher than it’s been since I started the trial - the nurse mentioned that low albumin is connected to pleural effusions.
    Interesting that you can use that as a baseline @Hooodith. Did your Onc indicate that it would likely come back with progression?
    Not having the drain (thoracentesis) means I do not know if the fluid is benign or malignant. If malignant, it would be interesting to see how they would have treated it. Drain + chemo? A question for my next consult!

  • Bojenka
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    @GloHo may I ask which clinical trial you are on in PMH ? I think you said kind of everyone is on Bodiva and another one or two ?

    @Strongwoman how are you doing?

  • melissa
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    @GloHo if I had to make an educated guess I would say that the reason why the pleural effusion developed during the trial is because the trial drugs? Immunotherapy if I'm not mistaken took a long time to start working.

    I can't think of any other reason to explain the effusion decreasing...

  • GloHo
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    @Bojenka

    I am in A Study of 23ME-00610 in Patients with Solid Malignancies. It is a Phase 1/2 trial.

    The other trial you mentioned is Study Looking at Biomarkers in Ovarian Cancer (BIODIVA). Here is a brief summary about the study:
    This is a sample study that will collect biological samples (blood, tumor tissue, ascites, and/or other fluids) from gynecological cancer patients for biomarker research. In addition, the results of the testing done on the samples will be given to the participant's treating physician who may use the information to guide treatment decisions.
    I believe quite a few of us have participated in this one to determine if we have a mutation or biomarker that would benefit from a drug developed or being developed (trial) that would target the specific mutation/ biomarker.
    I, myself, did not have any biomarker or mutation out of the norm so continued on standard of care regime - with a couple of trials along the way 😁.
    Let me know if you have any other questions.

  • GloHo
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    @melissa
    I was kind of thinking (hoping) the same thing. So very confusing 😵‍💫.
    We’ll see what my Onc has to say on Monday.

  • Strongwoman
    Strongwoman Moderator
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    Hello and how are you doing @Bojenka ? I am doing ok. Figuring it all out. Slowly.

    @GloHo that is wonderful news about your pleural effusion. Whatever the reason for it, I take it! Being free from that is good.

    @Hooodith Sounds like you are struggling a bit still. Is it the pain meds that aren't working so well for you anymore? If so, talk to your team to see if they can come up with anything different for you. It may help to ask,

    @melissa How is dog sitting going?

    @Bojenka How are you doing with your current news regarding your medical status?

    @jmbarrhaven Sounds like you are on the right track for receiving some treatment soon which is good. More promising than where you sat about a month ago,

  • melissa
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    @Strongwoman the dogs light up my soul lol. Perhaps not the hubby's soul as much... They are a handful but it's all worth it. Good exercise for me to. The dogs are used to a big backyard to run around in, something I don't have so I make up for it with long walks.

  • Strongwoman
    Strongwoman Moderator
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    Good afternoon Ladies. What does today bring for you? I am finding myself a little bored these days and trying to find my way out of it. Things that used to bring joy or fill my day just seem ho hum to me right now. I am doing my best to plug away at things despite feeling this way. I work on my knitting project or at least on finishing it which is tying in all the loose ends and there are a lot of them so it is tedious work. I work on my journals for the boys which is mainly fill in the blank but there is some stuff I just don't have a lot to say about. They asked about the first time I made love..,I truly don't think my boys want to read about that. If I had girls, maybe but I just can't see them thinking oh yeah thanks for letting us know that, Mom. So that is what I put in the space. "You truly don't want to know, do you?" And left it. Time to move on to other things.

    Went to see someone in hospital today but didn't stay long as they had 2 other visitors there. That was ok. I went to visit my elderly Aunt instead and we ended up going to Costco. Not planned but it turned out to be ok. Then I treated myself to a McDonald's lunch on the way home. Filet O Fish is about all I can eat there so stuck with it and it seems to be sitting ok. Had a craving and went with it. Now I find myself at home wondering what to do next, Dinner is a pop in oven deal today so that will be easy peasy. Maybe go for a walk to fill in some time, I dusted a little and popped in new air fresheners in the rooms so that is done too. So I will go back to the knitting project and journalling a little or may I will read a little this afternoon and see if that fills me up. I am open for suggestions if any one has any to help me out.

    So where are you all at today? I know we have had some activity on the site the last couple of days and hoping some of you are around for today. I know our @JoanEG is busy busy these days. She has a busy month for sure which is awesome with lots of family stuff in there. Next week I have a spa day which I am really looking forward too and see the Oncologist for the first time since she told me my numbers have doubled. I will be curious about the bloodwork for sure and weight situation. Other than that I don't imagine us talking much about anything. She has nothing new for me unless I want to do chemo and I don't want that so we are at an impass. I stay on the med I am on which is a chemo med and that is that. She will agree to see me monthly and we carry on.

    So come on tell me what is filling your lives,

  • Bojenka
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    @strongwoman….sorry I am joining bit late but had a lunch in St Jacobs early before girlfriend will arrive for visit .

    So @strongwoman you are asking how I am doing with my status. I am very confused to say the least who is my doctor that I can turn to.

    Had a 6 weeks wait for trial, and only medical assistance was palliative doctor. Meanwhile my symptoms ie pain became unbearable. Started on fentanyl patch today. Fingers crossed. And hoping I will be a match for the trial and some relief coming soon, hopefully next week.

  • JoanEG
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    Good morning @Strongwoman and everyone (still morning here). My days have definitely been busy lately but are a little quieter today. My son-in-law left on Tuesday morning to fly back to Saskatchewan and my grandson and his partner left this morning to drive back to Saskatchewan. My daughter is staying until after her first grand baby is born hopefully soon! Tuesday was her birthday so we celebrated with a girls night out at Merridale Cidery. Today it is a major house cleanup as I had all the grandkids, their spouses and the great grands here for dinner last night. Tomorrow I will be tackling yard work as I am hosting a baby shower for my youngest granddaughter on Sunday. Health wise I am in limbo at the moment. Haven’t heard from the surgeon’s office regarding a consult. Taking my daily Olaparib and feeling pretty good. I still have some nausea but between the partial bowel blockage and the huge doses of magnesium I guess that’s to be expected. I’m determined not to sit in that cactus!

  • GloHo
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    @Strongwoman
    Sorry to hear you have the doldrums! That creeps up on me once in a while too.
    I just woke from an unusually long nap - guess I must have needed it. I am finding that I am more tired the week before my next treatment. Just made myself an iced coffee…yum!
    Not much new with me.
    I should be starting to get things together for the cottage at the end of next week, but am having a hard time getting going on that…I haven’t even started my list yet!! 🤣 We are going to a cottage in Quebec and we’re thinking of leaving a day early and stopping about halfway to sleep over. That way, I don’t have to do the 6-hour trek in one day. Have to find a pet-friendly place and some sightseeing detours along the way.
    I did my car windows and some interior car dusting last week [lots of construction(dust) out this way], vacuumed the car today (well over due!) and will give it a good wash another day. Can’t do it all at once anymore!
    I have, hopefully, treatment next week. Then we head off to the cottage. After that, I have a CT scan. My results have been so whacky that I don’t know what to expect with this one 🤣🤣.
    I still have a lot of things I want to do around the house…donate stuff…sell some stuff…most of my paperwork is in order but still a few wishes I have to put on paper.
    What’s important is that I still, amazingly, feel okay after 5 years of being diagnosed. So grateful and thankful to the 😇😇😇 watching over me. 🙏

  • GloHo
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    @Bojenka
    Have you started your trial yet?
    If you need a place to stay (+escort) while undergoing treatment in Toronto, the Princess Margaret Lodge is a low-cost option. $30/night each for accommodation, 3 meals (2 options each meal) and free shuttle to hospital. The other cost would be parking. A parking lot is located a couple doors from the Lodge - it is $25/day (24-hours). If you want more info about out-of-town travel, let me know (i.e. CRA rules for medical expense claims).

  • GloHo
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    @Sandi6
    So glad you’ve found a trial!
    The EPOCH study is actually one I was looking at! Unfortunately, I have had so many treatments now, I’m finding I meet more exclusion criteria than inclusion criteria for most trials now 😵‍💫.

  • Hooodith
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    hello my sisters. I am in a quandarry. The tests all said I was fine, but I am still feeling awful. Nausea, shaking, gut pain, weakness. I get a bit of releif fron ddilaudid and clonazepam. R thinks it might be the heat, or possibly a major anxiety attack. But what about? I feel relieved about the testa altho they don’t show the CA numbers. Any ideas?

  • Bojenka
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    @GloHo No, I am still waiting to hear back from the 2 trial coordinators. @GloHo and @Sandi6 did either of you ladies have to do a biopsy ?

  • Bojenka
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    @GloHo Thank you for the info on affordable lodging. Might need it if I am a match.

  • GloHo
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    @Bojenka
    I have had 2 biopsies - 1 for each trial. Do you have questions?
    Let me know if you do plan on using the Lodge, I can give you the inside scoop.


  • GloHo
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    @Hooodith

    Glad your images and tests are so positive. Sorry your feeling crappy. Not sure what it could be…just throwing these out to you.
    COVID?
    Flu/virus?
    Gastroenteritis?
    Constipation?
    Low blood sugar?
    Overactive thyroid?

    I hope you find and resolve the cause soon.


  • Hooodith
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    @GloHo thank you for those ideas. I am leaning towards constipation with anxiety. I am a very anxious person . I have no fever. It is getting a bit better.