Squashed melon

[Melongirl]

I had my second chemo Palitaxel/ Carbo, with the promise of a very slow drip for the Paclitaxel on Friday, due to 2 previous allergic reactions. They gave me extra steroids too, which have me bouncing off the walls. My face is all puffy! Is that normal? And all went well for about 35 minutes and then I had another bad allergic reaction when they turned the drip rate up. I didn't realise they'd set it to speed up automatically. They all reacted so fast, it was most impressive, but am very irritated that I can't tolerate this drug. They stopped it and spoke to the doctor who said to not continue as they're worried about damaging me permanently, although there was muttering about keeping me in overnight and keeping the drip rate very, very slow. I'd have been happy for them to do that so I could get it in, but I suppose they know best. I hope.

Do they? So many many more questions with every little hiccup.

They continued with the Carbo, which went in fine again. One of the nurses said the oncologist will change my regimen and that they have plenty of other plans - which wasn't my experience when I saw one of the minions 2 weeks ago. She didn't have any other plan apart from only giving the carbo and dismissed every other drug I suggested - learned about them from you lovely ladies. I'm really not happy with that, as it's the combination of drugs that are best (I hope) for OCCC.

Seeing the oncologist on 30th again before next try on 3rd November. They also want to put in a PICC line as my veins are apparently very thin and they've been jabbed enough. I'm feeling squashed and squishy. Vent over. Hope you're all having a good weekend.

[85live4ever]

Hi Melongirl, I am so sorry to hear this has happen once more😯 Everything goes well till they pick up the speed why on earth can't they just keep the speed very slow. We are all different & its clear this works for you. They were talking about brining you in & feeding it to you slowly that does sound like the answer. So why the f*ck don't they.😲😲😲😲

You have asked, do they know what theh are doing clearly they don't!!! I am sorry I am coming over so angry but that is getting silly now. The answer to you, me & I am sure the others on here you need it fed to you slowly.

When you get the chance to talk to them again don't ask but demand they bring you in over night & drip it in slowly. I don't think you can carry on allowing them to keep f*cking up. Its not you in the wrong here it's them. Please keep us up dated or if you want to send me a private message. I will get off my soap box now & have a hot drink!!! Take care thinking of you Cindyxx

[Melongirl in reply to 85live4ever]

Exactly! Thanks for getting on the soap box for me. I have decided to be more forceful and less 'apologetic' while discussing this palaver. Also, need to see the actual oncologist and NOT a 12 year old minion! Grrr. I too shall now get a hot drink and practice standing on my soap box. Thank you!! Kate xxx

[85live4ever in reply to Melongirl]

Hi kate, that doesn't help when you are not seeing the big boss. I get very frustrated when I see someone that knows very little about my case. When I do get to see the big boss I get so much more sorted. My daughter in law has demanded we saw our onc not some doctor that knows nothing about nothing.

This is what I do when I am not getting any where, I look in a mirror & have a word with my self that I need to be less apologetic, less of a push over & come over more forceful. Though saying that I do take my daughter in law with me & if I don't speek up she definitely will. Lets hope they listen to you & sort this out. Take care Cindyxx

[eileen_alberti in reply to Melongirl]

FYI: I fired my onc and got a human, and found out I have mets to liver. Other onc would have just kept me dangling, so now I start new chemo Mon. I'm too exhausted just having found this out 5 hours ago but I've been on a mission to get to the bottom of what, how to deal and can it happen. So rant, then go to WAR, not battle. This is WAR, for your life. Do not be afraid of speaking up for yourself.

Phew! I finished my tea so it's bed for me. I feel better now. I'M CHEERING FOR YOU. Many blessings, Eileen

[Melongirl in reply to eileen_alberti]

Very sorry to hear this, Eilleen. I hope your treatment goes well and blasts those mets! Thanks for the encouragtement. God bless. xx

[Melongirl]

Getting revved up as I type! Thanks for encouragement. xx

[Janet235]

I am angry on your behalf also... why on earth would they set it to 'speed up' automatically when they know what is likely to happen? It just feels like they never thought it through or just plain....incompetence.... ( is that fair?). The problem is each time it happens I think they are more reluctant to try again... I know reactions can be super serious.

I am back on weekly taxol ( 8 th last week at Ch*****s) after an allergic reaction on it half way through the first round last year, it was then 3- weekly with carbo and avastin.

So now I get The chair as close as possible to the nurses station and every week they are Attentive, Aware and ALERT! EXtra meds and Watch me like a hawk, slow 1/4 drip 15 mins, stop, check, 1/2 drip 15 mins, stop check. All ok? now full rate... and thereafter constant - are you ok checks? .... so far so 🤞🏻-

who knows, is it HOW they administer or are we all so different in how we respond and tolerate different chemo regimes?

Certainly question what they are doing, and hope you find a way back to this regime....

😱😡😳 janet x

[Melongirl in reply to Janet235]

It's very annoying. They're so competent most of the time and reacted at lightning speed when I had the reaction. This time I got to the third 'speed' apparently, which means each time I've gone a bit longer without reacting. So frustrating. Will have to be more vocal when I see the onc on the 30th. Thanks for support xx

[Andrea63]

Hi - I've just replied to Zena41's post about allergic reactions. After two reactions to paclitaxel I stayed in overnight and had it over 24 hours. I also had a lot of supporting steroids before the chemo.

It's a test of patience but I felt it was worth it as it meant I could still have the chemo.

I'd definitely ask your hospital what the options are.

Andrea xx

[Melongirl in reply to Andrea63]

I'll suggest this to them when I go in on the 30th. The minion I saw last time had no plan at all and I had to suggest they try again on a slow drip. Sheesh.

Kate xx

[Andrea63 in reply to Melongirl]

I think all hospitals will have their own protocol for desensitisation. I know it's hard to make a fuss but I think you do have the right to ask to see your consultant if you're not getting the answers you want from the doctors xxx

[Caroles1]

Hi Kate,

I had a very bad reaction the first time on carbo/taxol and they did the infusion very slowly with extra anti histamines and it never happened again😀

Also, my veins were f....d by the end of treatment and I was offered I think a port,but check, if you like swimming there is one you can't have,so,choose the right one.

I'm not medical,but, I think they just need to get your mixture right, don't give up, I know where you are coming from and you will get there I am coming up to 3 years NED,

Good luck,

Carole xxx

[Tesla_7US]

MelonKate, I was hospitalized and given chemo as an in patient for two infusions. They front loaded me with steroids, (yes my face got puffy and I couldn't sleep for 24 hours) antihistamines to prevent anaphylactic shock and anti nausea meds. It took many hours, but it saved my life. NED for 14 months now. Get a PORT a CATH! It will save your veins and you can bathe and swim with it. I've now had mine for two years. Keeping it in place in case of recurrence. Be firm, be aggressive, get loud if you have to, but most of all remember YOU are in the fight of your life.

[Melongirl in reply to Tesla_7US]

Thanks for this. I'm determined to fight them on the 30th! I'm not too fussed about the PICC line, though I won't be able to swim. I've still got unhealed wounds after my surgery, so can't swim anyway. BOO! I sometimes think we're only a name on a bit of paper and they don't see the person behind the notes. However, have had excellent treatement so far apart from this hoohah.

[Tesla_7US in reply to Melongirl]

Please consider getting the port a cath. Much easier to manage, no infections (I've not had any in two years.) doesn't need special care, doesn't make a bulge in your clothing, you can jump in and out of shower, tub or pool. You can keep it for years.

[Melongirl in reply to Tesla_7US]

No one has mentioned a port a cath - don't know what it is, but will investigate. All they mentioned was a PICC line. The more I learn about all this the less I know.

[Tesla_7US]

it's completely hidden under your skin. Looks like a tiny bump, I'll send you a pic of mine tomorrow.

[Melongirl in reply to Tesla_7US]

That would be great, thanks.

[Neona57]

I think you should ask for a second opinion. My onc was not worried about leaving out the taxol on my last infusion. I have stage 3C clear cell and carbo- taxyl didn't work for me at all so I'm not sure why they are insisting on you having the taxyl.

[Melongirl in reply to Neona57]

Eek. I had Clear Cell 3a in a massive melon sized tumour, which is out now along with different cancer in uterus and a third kind in endometriosis. Part of the melon had broken off and dropped into omentum, so all that was taken out too. I'll discuss with onc on 30th, thanks to a lot more info from all of you lovely ladies. My CA125 was never raised but the CA99.9 was slightly. Am so confused about all this!

[Neona57 in reply to Melongirl]

My ca125 was never very high.

[eileen_alberti in reply to Neona57]

Hi Neona57: Me neither. My Ca 125 is 33 now and doc says it's not a very good gauge of what's going on. I thought it was the be-all/end-all test. So along with all that's going on we're now in medical school. And the tests are real heart-breakers.

And another thing: why are we all afraid to speak up for ourselves? Are we still in the "little woman" thinking? Oh, she's a woman and wouldn't understand all this info? Or is our self esteem on the low end and we don't want to make waves? Or................. what is it?

And as Melongirl said: the more I learn the more confused I get. But, do we need to get just the right info to not be confused? Our life is on the line here, not our job, our car, our LIFE. This stuff stays with us after we leave the office. We have to deal with it every minute until the next visit. Why should more info be so hard? Maybe we are just not asking.

this is a big job but "Take care of yourself" . Blessings, Eileen

[Melongirl in reply to eileen_alberti]

My thoughts exactly. I find the waiting about difficult. Am feeling horribly chemo-ey today, such a weird feeling. Despite only carbo and a small amount of paclitaxel, my hair is getting thin and loads of strands falling out all over. Am going to cut it all off soon. I'm still in charge and need to feel I have some control! Have a for rest of the week. Xx

.

[eileen_alberti in reply to Melongirl]

I got wigs the last time I lost hair. You wouldn't think it's such a big deal but I never knew my ears were so big. And I say wigs because it took until the 3rd to feel comfortable with the size etc. They weren't expensive, under $50 inc. shipping. Got the last at Goodwill thrift store. That was $5. Can I send you one? And you would think losing weight is a great thing. Yes, but now there are wrinkles, everywhere! I say all this in fun, if you don't laugh, you'll cry. I prefer laughing.

Eat something you like, change your pillow case to something different. I'll mourn your hair with you when it's time. E

PS I think there's going to be a next time on my hair. But it grew back and I even colored it because I didn't like that old lady in the mirror. So there's hope.

[Neona57]

Steroids in high doses do cause a puffy face.