Hi ladies, I saw one of the oncologist's minions on Monday and it didn't go as I was hoping. I've had 2 allergic reactions to Pacilitaxel and one dose of carboplatin. I asked about alternatives and presented a list I've gathered from info provided by yourselves. Thank you! She dismissed most of them out of hand as 'clinically unproven' or too expensive or needing special funding or just 'no', but said she'd ask the oncologist anyway. She answered a few of my questions and told me they'd found 3 different types of cancer when I had my surgery. Charming. The enormous 'melon' was the Clear Cell Carcinoma. Part of it had broken off and fallen into my innards but didn't seem to have put down roots.
Apparently the pacilatxel and carboplatin are the drugs clinically proven to be best for the OCCC, and said the plan is try paclitaxel again on a very slow drip with extra steroids and antihistamines. Last time they did so and I was fine for 15 minutes, it was only when they upped the speed that I reacted, though not as severely as the first time. If I react again that will be it and they'll only do the carboplatin, which makes me feel like they've pulled the net away. I was a bit unsettled that they don't seem to have any alternatives in mind. She also said the chemo is to give me as long as possible 'between recurrences', so they're obviously thinking it's going to come back. Not what I wanted to hear really, though the surgeon did tell me that initially. Why don't they tell you everything? Seems like they only give info if you specifically ask.
My next chemo is on Friday 13th. Wahahahaaaaaaa. Gotta laugh about these things, I suppose. Thanks for bearing with this epistle. Have a good week.
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Melongirl
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Gah. What a sh*tter. I'm so sorry.... as if the initial situation wasn't bad enough, these reactions are really quite inconsiderate. I am in Australia so deal with a different system but are you able to request (demand?) an appointment with the oncologist rather than the minion? You say they found 3 different cancers -- so OCCC and two others? Or OCCC in 3 different places? To be drip-fed such crucial info must be frustrating and leave you wondering what the next bombshell is.
There is so much great advice on this site so I'm just going to go ahead and parrot something I've read here several times, apologies if you have heard it before.... but the carbo is the main weapon in our fight and provides 90% of the total efficacy of the carbo/taxol combo. So if you're going to have a reaction I guess the taxol is the "better" one to react to. But that's likely cold comfort in a situation when you want to know you're using all the arsenal available. Does it matter if they give the taxol really slowly since this seems to not elicit a reaction? Do they need to speed it up?? So many questions!
I'm also sorry, and annoyed, that the minion stated something as confronting as "between recurrences". That is not ok! Please remember that you are not a statistic. Yes, the recurrence rates are high but there are plenty of women who don't recur. That could very well be you!
Bring on Friday the 13th! Dress up in your black witches hat and tackle this fight head on and with the humour that shines through your posts. GOOD luck xx
Gah is right! Thanks for the encouragement. Apparently I had a slow growing early stage something or other in the uterus (which they missed in February during a hysteroscopy), a different type, more aggressive but not very advanced in the endemetriosis and then the delightful Clear Cell Carcinoma in the melon sized tumour (which they 'missed' for three years despite my nagging for an MRI) GAH, I say!
I asked why they need to speed up the taxol since the slow drip was fine, and the minion replied that yes, that's what they'd try this time. I'll have to put my foot down with a firm hand, I think, and insist they don't speed it up. I had no reaction to the carbo, so that's good.
I refuse to be a statistic and bring on Friday 13th! I never do anything the 'normal way' and I'm not superstitious, but you know...bring it on! Take care xx
I agree with purple_k_in_Oz, and I sometimes think that there are some people who work in the medical profession that forget that we are actual people and not just a set of notes and this is sometimes reflected in the way they speak to us. You are an individual not a statistic and I too would suggest you ask to speak to the oncologist rather than the registrar.
Are you ok with the carbo? Are you able to have that alone or could you also have your taxol really slowly for the full dose. I know many believe the carbo is the main part of the treatment so if you can have just that it’s a big big step in the right direction.
As for Friday the 13th, it’s just superstition and I say ‘bring it on’!. My youngest was born on Friday the 13th, he’s been a delight for the last 32 years 🙂.
Don’t dwell on the reoccurring statement, not everybody does and you may not either, we are all individual and we all react differently.
Take lots of care, good luck next Friday, keep as well as you can, sending lots of love and hugs ❤️Xx Jane
Thanks Jane. Yes, I refuse to be 'a statistic!' I'm hoping they'll actually do the taxol at a slow rate for longer than 15 minutes this time. It was very slow and the last time when i asked the nurse why they couldn't keep it slow she said because it was so slow it would take all week. But am going to insist they keep it slow for as long as possible. Is building up a tolerance possible?
And bring on Friday the 13th! I've never done anything the normal way. Thanks for the love and encouragement. xx
I really don’t know if you can build up a tolerance to the taxol but I had my taxol every week as part of a trial (ICON8) I took part in, it was a reduced dose each week but the end amount was the same as if I’d had it every three weeks with my carbo. It may be worth asking if you could perhaps do something like this as it would be a smaller amount but the same time scale. You could also perhaps suggest starting your treatment earlier in the day so they have plenty of time to administer it slowly to you? The carbo is supposed to be the big guns in the treatment but the taxol obviously plays its part too but not everybody can tolerate it. I hope you are able to get some resolution with this very soon. Big hugs ❤️Xx Jane
Hi Molongirl, I know what you mean by having your ideas dismissed I call it being fobbed off. That often happens to me I go in with a list of excellent ideas & questions from the lovely ladies on here only to have them all shot down!!!
Seeing that having your chemo very slowly works for you. Why on earth don't they bring you in first thing then spend the whole day slowerly given it to you. They seem more concern about the time they might have to spend on you than the patient having a successful treatment. I know it would be hell having it slowly dripped in you but then thats better than a reaction. Could you call your onc & ask if you could go in as early as possible so they could try & give it to you very slowly. Does the unit stay open all day? If so then it's worth pushing for it otherwise they are going to end up with you having another reaction.
I am wondering if another hospital might be better at delivering your treatment. Sorry but what you have said so far I don't feel they are very competent.
Also did she clearly explain what the other cancers were? I imagine you came out with a lot more questions than answers. Please keep us up dated & let's hope it works this time. I will keep my fingers cross for you. Take care Cindyxx
Good idea to give them a call about going in early. I'll do that. Yes, it really puzzled me that they didn't immediately say, okay, slow is best. I actually had to 'suggest' it to the minion. I think the unit does stay open all day. Last time I was on the ward and would be happy to stay overnight if needed. I want to kick this thing as hard as possible.
No explanation of what the other cancers were. I think one was serous, but I was so overwhelmed at being told this for the first time I couldn't think of anything to ask. I took in questions, but she was in a rush as they were 2 hours behind time. I think they do actually forget about the person behind the bits of paper. Will let you know how it goes.
Hi, I once heard a good suggestion in a presentation by a senior CNS that it is perfectly ok to ask to record your meetings in order that you can listen again & most phones or ipads can do this easily..
I always went with my partner to the difficult ones and we'd often struggle between us both to remember bits of info (especially unfamiliar medical ) . I got into the habit of taking a notebook with my key questions and then writing bits down... It became a bit of a joke and once my surgeon asked to look to make sure everything was answered!
Of course they may refuse the recording but perhaps worth trying? Best wishes Sx
That's an excellent idea! I always take a notebook with questions but got so put off my stroke didn't write anything down. Will ask if I can record my next session. Thank you!
I would demand a second opinion they sound like they’re treating you like s**t and you’re just at the initial shock period to be fair sometimes we still can’t believe it but it’s become part of every day life and you do get used to it under no circumstances should they be rushing you for anything especially if it’s your initial appointment and they have to explain everything to you I would actually complain to the General Medical Council over your treatment from the oncology department and say ‘I’m under enough stress with an initial diagnosis then they go and treat me like this’ theyll soon pull their fingers out of their a**es! Xxx
Have you tried getting a second opinion? That minion you talked about does not have a very good bed side manner and with all you have to go thru you should have someone with a little more cuth and compassion than that taking care of you in my opinion. Sorry you are having such a hard time. Lots of love and hugs from Lakeland Ga in USA and I hope things will go a little smoother for you in the upcoming visits.
Just got back from 7th weekly taxo at Christie's (therefore only 3 rd amount each time) treatment, all ok so far 🙏🏻 Had reaction on first round, last July when I was on the standard carbo/ taxol /surgery route.....
SO I am pumped up with 3 days oral steroids and other medications given in liquid pre meds on the day. THEN 1/4 rate taxol 15 mins, 1/2 rate 15 mins then go....
problem is according to discussion with onc yesterday is that it only takes the smallest amount to have a reaction if you are prone - but yes it IS possible to go slow slow slow for all of the treatment... but depends I suppose if it's weekly or 3 weekly. Could be there the entire day.....😳
Everything 3's today....🌈🌈🌈 good luck on the 13 th.....☘️☘️☘️Janet x
That's good to hear,thanks. I was told in the beginning three days steroids before but this hasn't happened and when I mentioned it the minion didn't say anything.
I reacted to Taxol as well, twice . First time after Carbo had gone in, second time after an hour on Taxol and it had to be stopped so I didn’t get my Carbo that day (had it the following week so I lost a week). Tomorrow we are trying docataxol and Carbo and hope I don’t react to the docataxol. I argued for trying Taxol again but onc gave me a flat no. She won’t risk anaphylaxis, end of story. The other reason is that if I get Taxol even slower and subsequently react I won’t be able to get Carbo tomorrow and will lose another week
Hi melon girl - I don't know if it makes a difference but I just had my second Carbo taxol yesterday.
From your description they give you the anti reaction ivs at the same time as the Carbo taxol.
I'm on the 3 week regimen, but they have me come in in the morning, test my blood, and then give me two IVS in sequence to counteract the effects.
Then they give me the Carbo then the taxol. My body is first flooded with antihistamines and the other agent before I get a drop of Carbo or taxol. I am there for over 7 hours. But it seems to be worth it.
If that is not the regimen you are on, 4 ivs, one at a time, ask them to do it that way.
And if they aren't more responsive, or you are still having a reaction, get a secod opinion .
I have had two reactions to paclitaxel. I always ensure I have an half hour break after premeds, before starting the paclitaxel and then go very slowly, even though I was reassured by the nurse on my 5th cycle yesterday that this is unnecessary! Still I insisted. It makes no sense to speed it up, you could have a serious allergic reaction rather then a mild one, then the doctors will insist paclitaxel is too risky for you. My chemotherapy takes from 8am to 5pm, and longer the twice I have had a reaction. As you said, you are more than willing to stay overnight, so please persevere and insist on what works for you, which is clearly very slowly xxx
Thanks for all the excellent advice, ladies. I had a chat with someone from the hospital yesterday and she said she'd speak to them and check with the day unit that they are going to do it slowly. Am hopefully speaking to my CNS today, and will again ask about the slow infusion, and mention all your helpful tips. xx
Glad to hear you found somebody from the hospital who listened. Who would have thought that would be so much to ask?
Some great points made by the wonderful ladies above. The ones that stood out to me are 1) from 85live4eva, ask to be the first cab off the rank. Simple and proactive! 2) from Pdajudy, make sure you get the Carbo first, that way if you do have another reaction and can't have any more meds, at least that's gone in! (Sounds obvious but i wouldn't have thought of it, lols). 3) As Maryof said, she now gets docetaxel. Paclitaxel is part of a family of drugs.... (a mitosis inhibitor according to google). I wonder if your team would try another type of drug from the same family?? I honestly have no clue regarding best practice for this but it could be worth asking. 4) As per Janet235 re: the steroids, I remember reading about somebody else who had high dose oral steroids for 3 days leading up to her chemo and that helped mitigate her reaction. Again, good luck!
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Thanks for the love and encouragement. xx
Platinum resistant - paclitaxel planned
Here we go again - cisplatin this time
Here we go again - again!!
Will I ever be fit again?
On the treadmill again
