My Ovacome

Gah!

Gah!

Hello all,

Today I once again saw a minion and not the actual oncologist. She had however, spoken to him shortly before seeing me, which I suppose is something. After my last reaction to the paclitaxel that's it. I'll not be having it again and so Plan D is to only do the carboplatin. I said how I wasn't happy about that, especially as she'd just told me that the other cancer, endometrial/uterine was adenocarcinoma , another rare one to accompany the massive clear cell melon. She smiled sweetly and I could almost hear her thinking 'Aw bless. Poor old bat!'.

I feel like they've given up before even really getting started. I understand about the paclitaxel maybe being fatal the next time, so obviously would like to avoid that. And any heart damage. I once again asked about recurrence and once again she said as soon as I have 'symptoms' to let them know. No idea what symptoms and she couldn't tell me. Gah! They clearly only deal with the 'right now' and don't start working on the next plan until something new happens. She seemed pretty certain a 'next time' is going to happen at some stage.

I asked about other drugs I've heard about from yourselves, and she said the paciltaxel/carbo combination are the only drugs 'clinically proven' and that lots of ladies only have the carbo, which does 80% of the work....but what about the OTHER 20% FFS?! Apparently they don't routinely do other drugs, which seems odd to me as it's considered the best oncology unit in the South West.

Meanwhile, next cycle on Friday and to accompany the fizzy feet and blurry eyes and mouth ulcers and nausea and fatigue, I have another delightful UTI (it's only the 6th since my surgery #rollseyes) to keep me entertained and distracted from the dark thoughts.

Have an awesome week. Onward and Upward I say!

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Hi where are you in the South West? I know its hard but could you say to your chemo nurse you want to see the 'real' man, (if its a man) and dare them to say no....try saying you are totally confused about where to do from here......

Don't think they should leave you like this but my experience living in that region was that you have to be very clear what you want...can anyone else contact them for you?...everybody tends to be too 'nice'. Thinking of you lots, love Chris xx

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Hi Chris,I'm at Bristol Haemotology and Oncology Centre. I've told numerous nurses including Macmillan and my CNS that I want to see the actual oncologist and not a junior doctor. Fat lot of good that's done! Don't have anyone else to contact them. Thanks for the support. I feel worried and sort of 'abandoned' if that makes sense. Will chat to my lovely Macmillan nurse again on Friday. Xxlove Kate

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Hi Kate...agree with Lyndy....ask the Macmillan nurse if she will support you talking to PALS or its equivalent....not to complain as such just to politely insist.....you could get your GP to refer you for a second opinion which is your absolute right under the NHS constitution but you might feel your centre's reputation makes it the best place to be I guess.

Let us know how you get on on Friday. Am sure one of us could support you if necessary even if just by phone. Don't be despondent...Chris xx

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Thanks. Doing my best to keep the chin up. xx

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Hi Kate

It is frustrating when you have burning questions and you get the monkey not the organ grinder!

At the very least they should go through this decision with you and explain what they expect the chemo to do. But it is really hard to keep pushing when chemo is depleting your reserves. Try to get Macmillan or the CNS to fight your corner if you can. Lxx

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agree Lyndy, Kate shouldn't have to put up with this! x

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The minion explained that having any more paclitaxel would do damage and that I could have a fatal reaction. She said the chemo is to target any cells that have escaped into my abdomen or elsewhere, but that they couldn't see during surgery. I already knew that but was sure they'd have another plan for the 20% that isn't targeted by the carbo. Will speak to my Macmillan nurse again on Friday when I have the PICC line and the carbo. It's so frustrating! Thanks for all the words of encouragement.

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suppose 80% is better than a fatal reaction...my chances presently are 40% I think! good luck....C XX

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Hi sounds like me all over again. They were just gonna give me carboplatin.

But then my diagnosis changed and a different treatment 😤

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melongirl, please get a second and third opinion. Do not be lulled into thinking they are doing "all they can" when clearly, they aren't!

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Exactly! It's the seeming lack of another plan that's getting to me, especially after being told every time by the nurses 'they have plenty of plans up their sleeves'. So far, haven't seen any evidence of sleeves, never mind plans up them.

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MelonG, you deserve to be the center of your oncologist' attention. I am disturbed by the callousness of the treatment you are receiving.

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It's very frustrating. They are all very nice, just don't seem to have any other plans and don't respond to any of my suggestions. I did actually ask about Avastin, but the minion dismissed it without any explanation.

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On this side of the pond, Avastin has been given the green light for OvCa patients. You might ask if it is available under NHS.

The primary symptoms for OvCa are the same for either side of the Atlantic, but one organization came up with a great Mnemonic which helped me learn it backwards and forwards. I order the B E A T Symptom cards 500 at a time, and pass them out wherever I go.

B E A T - Pay attention to these to help BEAT Ovarian Cancer

B loating - persistent - usually more than twelve days in a month - accompanied by

E ating less and feeling full to soon. You may still feel hungry, but you stomach says No!

A bdominal pain - may also feel like lower back pain

T rouble with the bladder - going more frequently and/or urgently

The Bloating and possible tumors cause the swelling in the abdomen that squeezes the stomach and bladder causing the additional symptoms

Additional symptoms that occur in some, but not all patients - Abnormal bleeding or spotting, especially in post-menopausal women

Unexplained weight loss or weight gain. My wife lost more than twenty pounds in five weeks, but she didn't know the weight loss and others symptoms were signs of Ovarian Cancer. I learned all this after losing her the same week her OvCa was confirmed and Chemo was initiated.

Continually feeling tired - absolutely no energy

Constant aching in general

There are others, as different women experience varying symptoms.

As one previous post said - It's your right to seek a second opinion. Every woman has to become their own best advocate for their health. Speak up for yourself.

And for every woman reading this post, the color for OvCa is Teal -

Take

Early

Action &

Live!

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Thanks for this. I've had most of those symptoms for a very long time and was told they're Fibromyalgia and IBS. I was trying very hard to lose weight before I was diagnosed, but suddenly it came off very fast, so 'they' reckon it was partly my own efforts and partly the 'melon' - an enormous clear cell carcinoma. I still have a lot of the symptoms, now you've put it down so clearly. Lower back pain and needing to wee often are put down to another UTI. I'll have to ask them. Again. I'm 3 months post surgery where I had all my lady bits plus omentum removed. Am now more confused than ever.

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MelonGirl,

Visit DoctorOz.com

Enter the search term - Ovarian

Then search for his Tracker Sheet. It's a five week calendar with the four primary symptoms. The calendar is undated, so start with yesterday or even Sunday and begin keeping a log of the number of days you have the four primary symptoms - He has them in a different order, without the BEAT Mnemonic, but it's the same symptoms.

When you can hand something tangible and succinct that puts it together, sometimes it can become as clear as your doctor's nose on his face. Add the unexplained weightloss that exceeds the weight of the tumor and 'debulked' lady parts and it brings it all together.

Sandy's Dr. refused to accept another Oncologist's diagnosis of Ovarian cancer, or he didn't bother to even read it, like he skipped the CT Scans, and wanted to going chasing after mythical masses with the Colonoscopy and Endoscope. I stood my ground and opposed the tests. He knew I had him for either ignoring the CT Scans or rejecting the evidence they provided.

I love having the B E A T Symptom cards in hand, so when a woman says, I don't have to worry, I had a Hysterectomy or I had my Ovaries removed years ago. The clearly states,

"Ovarian cancer doesn't care if the Ovaries are absent!"

Unless the Fallopian Tubes were removed before the first pre-cancer cells germinated and left the Tubes, the women remain at the same risk, as 75 to 100% of Ovarian cancers have now been shown to start from Fallopian tissue that migrates to the Ovaries or elsewhere.

My wife had the Tubal Ligation more than thirty years before her brief battle with OvCa, but the cells still found their way to the Ovaries. Blocking the tubes merely prevented any eggs from getting to the Uterus as a means of removing the chance for future children.

Spend some time on DoctorOz.com, Ovarian.org, and/or other Ovarian Cancer websites, including those in the U.K. and prepare yourself to become your own BEST Advocate.

Dennis

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Thanks Dennis, will check this out.

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Hi Dennis,

Ovacome (who host this community) have a good symptom tracker on their website & Target OC also have an app that can be downloaded from theirs.. Raising awareness of these symptoms & helping doctors to make earlier diagnosis is very important to all of us here. In this thread, MG has been diagnosed and is in treatment. Sx

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Thanks will check it out. I'm still having first cycles of chemo, but my head has already jumped ahead to 'recurrence'. I need to focus on NOW.

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Hi MG, the symptom trackers are to help with initial diagnosis.... Know you are in completely different place and trying to negotiate your chemo. Definitely right to stay in the 'now'.... So sorry you are having such a tough time with communication from your Onc team. Theres good help out there with the main charities in uk... wishing yiu hope and strength x

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Thank you. Xx

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MelonGirl, while I am not an expert on all of this my intuition is telling me that the uti like symptoms are most likely from the stent. My surgeon and chemo DR acted like they didn't understand why I was having all these issues and ruled out the stent until I say a urologist... Turns out once the stent was removed life was being lived outside of the bathroom and nearly pain free. Please ask about seeing if the stent needs to be replaced or if enough time has passed that it can be removed. below is my blog post about my experiance. Hope it helps get you some help on the matter.

reflectionsofmyworld.com/sh...

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Thanks. I'm having a urology scan next week as they're planning on taking the stent out sometime. I also think it's this causing the troubles. The oncologist said she thinks the bug I had after my surgery hasn't died and keeps waking up when my resistance is low after chemo. Am on more antibiotics to try and kill it dead. Will have a look at your blog. Thanks for sharing.

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I pray it is the stent so that you will feel so much better once that is out. Are you having spasms with it?

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No spasms, just horrid burning. It clears up after antibiotics, but then comes back about 10 days after chemo.

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Ask about the possibility of Docetaxel instead of Paclitaxel. I have Docetaxel because of my reaction to Paclitaxel and it's currently working xx

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I asked about that and the minion dismissed it instantly as 'clinically unproven' and said they don't routinely offer other drugs and will stick with the single agent only. Beyond frustrating, even when I mentioned this site and all the other ladies like yourself having Doxetaxel instead of Paclitaxel. I'll keep trying. Argh. xx

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I really feel for you, it's horrendous that they just dismiss it like that when it really works. My CA125 just kept going up with Carboplatin alone and I've had 3 lots of Carboplatin with Docetaxel so far and my Ca125 went from 234 to 132, then to 91 and I've been to get my results again today before Thursdays chemo and its now down to 61. It isn't officially licenced for ovarian cancer, but it works and it makes me so cross that people are left to worry like you are :-( Sending a big hug xx

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Thank you, I really appreciate all the support. My CA125 was never raised though, despite 3 different types of cancer, so I'm not sure what happens next or if in the future they'll check it routinely. Just have to focus on what's happening now, I suppose.

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I agree, trying to focus on what is happening now is best. I really hope you get some answers from your medical team. Much love xx

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Hi MG,

Do give one (or more!) of the helplines in the UK a ring... Ovacome, Target & Eve Appeal all have specialist nurse-led support services. I know many people have found them incredibly helpful.. Sxxx

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Oh great, thanks for that info. I'll give them a ring.

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You can also post a question to a team of experts on the TOC website... it takes a couple of days to get a reply but will be quite detailed xx

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