New, freaked out member

New, freaked out member

Hi everyone, I've been lurking on the edges for a few weeks now, but decided to bite the bullet and plunge right in...mixing metaphors, sorry. This is a bit long, hope you can stay awake.

I had surgery five weeks ago to remove a massive (28cm) honeydew melon sized ovarian tumour (melonectomy?), which turned out to be very nasty -Clear Cell Carcinoma grade 3a - not entirely sure what this means and not sure I want to know. It's been slowly feeding off me since 2014 but that's another story. They discovered wide spread endemetriosis so everything was stuck together. They removed my cancer riddled uterus, ovaries, tubes and accidentally cut my ureter and had to call in the urology consultant to put in a stent. Then they found a huge hernia near my belly button so had to call in the hernia bod, who fixed it up. The omentum had got stuck inside the hernia. I'd though my melon was trying to escape through my belly button. Omentum removed and cancer found there too. Six and a half hours later...

To cut a long story short I am home and recovering well from the surgery. And then today happened.

Went in for first chemo and it was a nightmare as I had a very severe allergic reaction to the paclitaxel. I was supposed to have three hours of that then an hour of carboplatin. But literally within seconds of them opening the drip I couldn't breathe, chest tightened, terrible pulsating pain in face and back and the world turned a strange orange-beige colour. The nurses were amazing and leaped into action instantly. They said my staying very calm throughout made a huge difference. Yay me! (gotta see the positive, don't I?) So Plan B. They called my oncologist who wanted them to 're-challenge' very slowly, but they said my reaction was so severe they weren't happy to try again - I was at a satellite unit in Bristol.

The oncologist will call me and Plan B is for me to go into the Oncology Unit in Bristol after a few days of oral steroids, which should help, and then to try again with a very very slow drip. They're better equipped at the hospital if it happens again. This wasn't part of the plan. I was determined to sail through without any problems. EISH - as they say in the land of my birth, South Africa.

Obviously they stopped everything and after a couple of hours of observation was able to come home. I feel like I've been hit through the face with a wet kipper. And a cricket bat. By a woolly mammoth. But had a good sleep. Now I have to wait for the experts to call and take it from there. A bit of a delay to treatment but they assured me the oncologists have a whole lot of other options, so all is not lost. And I had my hair cut really short last night to lessen the trauma of hair loss. I look like a four year old boy on his first day at big school.

I'd love to hear from anyone who had the same experience and any positive stories about all this palaver. I'm delighted to be part of such a great community.

I'm a writer, so have started a blog as a way of getting the junk out of my head. Maybe it can encourage someone else. themelonandme.wordpress.com/

I'm looking forward to getting to know you all.

34 Replies

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  • Hello Melongirl!!

    Welcome to our little community of lovely ladies (and a few gents), who totally get what you mean about being smacked in the face with a woolly mammoth 🐘 (OK, it's an elephant, but you catch my drift...). You are in safe hands with us!

    I had an extreme allergic reaction to paclitaxel too - lots of fun in the chemo ward that day for the other patients, not so much fun for me. The oncologists didn't want to restart it on me, but in the next round I was swapped to docetaxel which is a close relative of paclitaxel. I tolerated it well for the rest of my chemo, was watched like a hawk by the nurses when they started the infusion, and always had a set of mini-reactions which literally cycled through in the same order each time and were over within about 5 mins.

    I'm sure your team will have a plan for you.

    Vicki x

  • Thanks Vicki, that's so encouraging. Lovely to connect.

  • Hi lovely and welcome to our wonderful family,

    You've been through a hell of a lot in such a short space of time I can't answer anything you've written but just wanted to say we're all here to answer any questions you might have and to wish you luck next time you try chemo xxx

  • Thank you!

  • What a positive person you are. And through all your issues you can write so

    well about such difficult circumstances.

    It took me a while to come to this forum but so glad I did.

    There is a wealth of experience, guidance, support,love and humour.

    There are so many treatments I'm sure they will find one that you can tolerate.

    Welcome and I look forward to reading your blog. Sarah x

  • Thanks, I'm sure they'll sort it out. It was an unpleasant shock I must confess. But onward and upward!

  • Hello 'Melongirl',

    Love your humour shining through all this SH-one-T you're going through. Keep going and our fingers will be crossed for you.

    Lesley

  • Thanks. Will keep you posted. Great to connect.

  • Well Melongirl!!

    I'd say most of us have had some kind of reaction to the first chemo. I did also, I turned bright red and was not able to breathe, but the nurses were ready to counteract this.

    You have had s lot done in a short time, I hope u are healing well.

    The ladies on this site are amazing ( and we have a few gents)

    Best of luck with your treatment.

    Ann Nora 🍀

  • Thanks. Good to know I'm not alone.

  • Just started reading your blog absolutely fantastic so far 😊 Xxx

  • Glad you're enjoying it. Thanks for the encouragement.

  • Welcome Melongirl! I know you've been suffering but your description has me howling and your graphic takes my breath away! Imagine that gihugic melon trying to escape via your navel......just too funny! Please, please write a dark, comedic screenplay about your experience! I honestly think a sitcom about OVCA would be the best way to raise awareness of this shit disease!!!! As to your reaction I have to ask whether they front loaded you with steroids beginning twelve hours in advance? Did they also pre load you with anti-histamines and anti nausea drugs? THEN give you a SLOWWWWW DRIP infusion? I hope to goodness they did all of that in preparation, however, if they didn't that just means that if they take all the right precautions and give you a slow infusion, like say 7 hours or so, you could be just fine. Keep in touch. We're always here.

  • It's a relief to know people out there gets my weird sense of humour. While lying in ICU and something funny happened I kept thinking 'THIS is going in the book! A sitcom would be brilliant, will start working on, thanks for the suggestion.

    I had premeds of steroid, anti-histamine and anti-nausea drugs, but only half an hour before the dreaded dripping began. And it wasn't slow at all because I reacted instantly. They said less than 10cc - ml? went in before the reaction.

    Plan B is to give me oral steroids for a few days and then re-challenge with Paclitaxel again, but very slowly, this time. Thanks for the encouragement about the slow drip being better. I am a bit worried about them trying the same poison again when I reacted so badly. 7 HOURS? I could write a book in that time!

  • 7 1/2 hours is what my treatments lasted each time due to avoiding the reactions, glad to read that they are doing the steroids, anti-histamines.

    You may ask if they can give you something for anxiety before just to help calm the nerves the 2nd time till all of you see that hopefully, the slowing down of the drugs will be the answer.

  • Good idea, although to be honest I was really calm during, its since I've been home thinking about it that I've been less calm. But very encouraging to hear that slowi g it down with more steroids works. Waiting for the call from the oncologist is hard...not a very patient patient, me.

  • Melon, Each of my primary chemo infusions took 7 hours total including saline for hydration.. I actually enjoyed it! Read and slept most of the time.;-) I hope you've got a port a cath!!! NO CANULA!! That's just cruel.

  • Loving the melon analogy! My friends decided that the tumour on my omentum was a fur ball - needless to say I was a bit disappointed when they told me it was PPC! I also had a reaction to taxol - very impressed with the reaction of the crash team although they weren't impressed when they realised I still had a sweet in my mouth when the removed the oxygen mask - I'm not one to waste good food! All was well and the infusion continued after further steroids. Good luck with your treatment and keep smiling!

    Best wishes Ali x

  • Thanks for this. I like the idea of a fur ball. Sorry, what's PPC? All these new words I'm learning. My brain is like porridge. Good to know your team reacted so fast. Mine were amazing too. Very impressed with them. Good luck with your treatment too. Never stop smiling!

  • PPC is Primary Peritoneal Cancer - it occurs in the peritoneal cavity and can attach itself to any of the organs there. My primary tumour was on my omentum, just under my rib cage. It comes under Ovarian Cancer because it is believed that the rogue cells start from there. I'm just over a year in and had chemo, surgery, chemo and now a drug called Avastin . Tired, but have managed a holiday every month including skiing. Away again tomorrow: making the most of it for as long as I can. Take care, Ali x

  • Erk, that doesn't sound fun at all. But skiing does! Enjoy your holiday, may you return feeling refreshed and strong as you continue the fight. All the best x

  • I also have clear cell stage 3C and carbo/taxol didn't work at all and I had a recurrence less than 3 months after finishing chemo. My advice is to get a second opinion as clear cell is commonly resistant to platinum based chemo so you may be better off having a different treatment. I am going to London next week to see a dr privately to get advice. Please keep in touch and let me know how your treatment goes. They are trying to get me on the Niccc trial for Nintedanib for patients with clear cell who recurring within 6 months of frontline chemo, wishing you good luck, Wendy

  • Another question, if you don't mind. When you say you had a recurrence, how did it recur? Was it another tumour? I was only told the term Clear Cell Carcinoma when I asked my GP what my cancer is called and thought it was the melon that was the clear cell. Confused. I've actually been too afraid to ask too many questions, really...

    My CA125 has always been normal. The only tumor marker that was raised was the CA19-9 and that only slightly. I had uterine cancer too, womb, ovaries and tubes were removed as well as omentum which had microscopic cancer, only seen in pathology.

  • My ca 125 was tested 3 years ago when I first became anaemic but was normal so nothing pointed to ovarian cancer. Before my op my ca125 was 67 even though I had stage 3 c ovarian cancer so it is not a good enough marker for me. Again I think this may be fairly common with clear cell.

  • Hmm. It's all so confusing isn't it? I was severely anaemic too, and have felt a lot better since having a blood transfusion. Mine was grade 3a, but I don't know what stage. They haven't really given me a lot of info to be honest, just leaped straight in to treatment plan. I need to ask more questions! if I even knew what questions to ask.

  • Thanks. I'll speak to my oncologist. They said they took out all the evident cancer and that the chemo is more about 'what was in the bucket', and they removed the melon, which was the clear cell carcinoma, as far as I'm aware. I'm still a bit vague about it all and don't really know the right questions to ask. Any advice is most welcome. Can't afford to go private, unfortunately, so have to rely on the NHS. All the best with the trial, I'll ask about it.

  • Clear cell is the type of cell that makes up the tumour and apparently looks clear under the microscope-well I read something like that. The recurrence is 2 suspicious tumours on peritpneum and 2 on liver. I had complete and successful debulking and did not have any cancer on my liver before-this means that the chemo was completely ineffective and it left me with mild kidney damage. I am not suggesting that you refuse chemo but a second opinion from a forward looking dr might be worthwhile-someone with a speciality in clear cell. I read that clear cell patients are treated the same as serous type cell patients because there is no other standard treatment available. I think you need to do a lot to help yourself and not just accept what is on the doctors flow chart.

  • Hey Melongirl, welcome! I know you said you cut your hair short, but there's a chance you don't have to lose it. It's the paclitaxol that causes the hair loss. I wore something called a 'cold cap' on my head during treatment, and kept all my hair. It thinned slightly but other than that it worked brilliantly. Ask your team ASAP if interested. It's pretty uncomfortable to wear for the first 10 mins, but after that it goes numb, as it literally freezes your head! A standard painkiller, and a bit of distraction at the beginning works wonders!

    I also chart my story, but on Facebook. Tried to set up a blog but lost patience as I couldn't figure out how it works!

    m.facebook.com/sarahfrostmy...

    You'll love these women, they are great & have a whole raft of info at their fingertips! x

  • Thanks. They mentioned the cold cap but after my severe allergic reaction to first chemo, don't think I can cope with a frozen head. I'm not too fussed about the hair as it will grow back. I just want to get through it without another reaction and kick this thing in the butt. Will pop over to your page now. Have a good weekend.

  • Hi.I too had a reaction to placiltaxol.Was given steroids before treatments and that took care of the problems.The only thing about the steroids is weight gain from all the sterioids.As of right now on second reocurence.Weight gain an issue again.Only on Carbo right now.(no hair loss).A small break from Taxol right now.Take care..Crossings fingers all goes well for you..🤗💙💙Lynn

  • Thanks for this, Lynn. It's good to hear the steroids helped with the reaction. Not keen on the weight gain though, as I've managed to lose just over 6 stone, with a lot of hard work (and a bit of cancer) and not wanting to go back up the scale as I feel so good (apart from a bit of cancer)! Grrr. I told my oncologist I was worried about putting on weight again with the steroids and she said I have to focus on recovery and to try 'will power'. Gee, why did I never think of that before? Good luck with your treatment.

  • Saw specialist in London yesterday and am going to write a post about it. One really important thing that came out of it is that clear cell ovarian cancer has a very much higher risk of blood clots -DVT/pulmonary embolism than other types of ovarian cancer and she was very surprised that I was not on blood thinners. I had a pulmonary embolism straight after my surgery and was on heparin injections for 7 months but stopped after chemo finished-so, if you are not on any-please adk asap.

  • Eek. Thanks. Will ask oncologist next time I see him in about a week. I had Clexane injections for a month after my surgery but no mention was made of more treatments for clots.

  • I am finding the level of knowledge about clear cell very worrying. The specialist I saw had knowledge on a much, much higher level.

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