Why what happened to you?

Hey 2me

same happened to me - also lucky to be here!  Scary times.  Hope you are ok now x 

2ne.

Hi I've just read your post and yes I can relate to your reaction to Paclitaxel chemotherapy drug. I had four Ec ,and was changed to have four paclitaxel chemotherapy sessions. On the first administration of the paclitaxel  chemotherapy, within minutes I experienced shortness of breath,felt extremely hot and was shaking and finding ut difficult to breath. I had only had 2mls of the paxitaxol drug going into my body  so it was stopped.  I was told  I had, had  an alergic reaction, after my body settled down I was able to go home.

They contacted my oncologist, and the next week he called me  to say he wanted to put me in hospital and de sensitive me,meaning administer the paxitaxol very slowly over a number if days,so my body would tolerate it better. I said I wasn't happy to do this,as I'd only had 2mls of the paxitaxol drug go.into me,and I felt so ill,and it was my birthday on the week he wanted me to be in hospital, and I dudnt want to be in hospital on my birthday. I had been tokd by the chemotherapy staff that  there were many differnt taxol drugs,whuch may suit me better.He understood and said OK I will start you on another taxol drug, it begin witu the letter A,I can't remember what it was something like Amataxil, so thats what we did. It wasn't pleasant, but I tolerated it,and was able to have four sessions to complete my chemotherapy.  I then had at a later date 3 weeks of Radiotherapy. 

Hope you can disscuss your options with your oncologist and make the right choices for you and your body. 

Good luck  with everything. 

Hi Jassoscared....yes, that's it....I'm lucky to still be here.   I've got clotting issues and at the moment feel they aren't taking these into account.  Today I've asked they get my notes and scans together for a second opinion.  Spoke to the nurse today and she said 5 months heavy bleeding are "heavy periods" and nothing to do with the breast cancer.  Hmm...TNBC...bleeding that I should be in hospital now....nobody concerned before I get another round of paclitaxel as an inpatient....I can't take the risk right now.

I'll get back to you again if that's ok.  Just heading out away from it for a while.  All the best Jassoscared x

Hi, I didn't have a reaction with paclitaxel but I did with another drug. It was very severe and as you know extremely frightening. My team tried desensitizing me but the reaction began much quicker and my treatment was stopped as it was likely to kill me. I spent an anxious few weeks waiting to see if there was another drug that I could tolerate.

I began a different regime and reacted to it but not severley so it was reduced to 75% of the original dose and I am still on it with no issues 6 months later.H

ave faith in your team and good luck with your treatment.

Barb xx

I certainly wouldn't have any faith in the team supposedly looking after me if I'd been treated as you have. It's disgraceful and happens far too often. I've experienced disgusting behaviour towards me whilst in hospital for other issues so I'm aware it happens. It definitely shouldn't though and making a complaint to your health board may help someone else in the future. 

As for your situation they make it very difficult to obtain your notes for yourself but definitely ask for a 2nd opinion.I have inflammatory breast cancer at stage 4. It's not seen that often so I asked for a 2nd opinion. I live in N. Wales and requested to be seen at the xxxxx. My onco was perfectly happy with my request and I was seen very quickly. As it turned out they suggested the same treatment that I was on. It did reassure me though. So I'd suggest you try a different health board because they'll be impartial and not being part of the original team you'll feel more at ease.

Cancer is hard enough on us and our loved ones without the added stress of not being looked after/ treated well by the staff that are supposed to be helping us. I sincerely hope that you are able to get answers if not from your team then from elsewhere. Good luck and let me know how you get on. Barb xx

In limbo again.  Now they don't want to try chemo as an inpatient....they want to go straight to op next week.  It seems the nurses tells me one thing and the onco tells me another. 

Happy enough to go to op although I hope they've got the clotting issues covered a bit better than they have so far.

Where is my MRI???  How can I know if op is worth it if I have it somewhere else that will kill me quicker than the lump in my chest?

Now caught with no one over my care until surgeon tells me he's ready to do op, which should be next week.  Who do I ask to get an MRI?  The nurses told me I'd have one and a US on liver, onco said nothing. 

Is it money that is stopping them take me in to do chemo as an inpatient?  Did the nurse tell him I didn't want it?  I was caught off guard when onco said no chemo...I'd at least expected a review of the drugs as I see I could have tried an alternative to paclitaxel.  I'm lost.

It sounds like you're having a very stressful time when you just want answers. In your situation I would phone your oncologist's secretary and explain that you need to have a conversation with him. When you do speak to him have a list of prepared questions in front of you so that you don't forget something. You can also ask for a 2nd opinion as I've said previously. 

I do hope that you get some answers and know what is happening going forward. Stress is the last thing that you need right now. 

Bxx

How you doing Barbm?  Hope all is looking good in your world.

Well I didn't get my notes for a second opinion, but I did get a mastectomy last week.  Only the one gone due to the clotting problems.  Would have had it done weeks back if someone had looked at my notes to see it was an urgent referral back from onco to surgery.  It's not their fault there are too many of us and not enough of them.  As it is I was on the same time frame as I would have been if I'd had the 12 weeks of chemo.

Not so good now, if not pain in one place then pain in another and they have made it clear they only treat breast cancer.  The nausea is hard going, as is the kidney pain, possible pancreatic pain, headache, vision/ hearing/ tinnitus, and now I have little lumps below, on my back, underarm and neck.  The op recovery is a doddle in comparison :laugh:

One way or another I'm getting somewhere :wink:  If it is my time, don't think I'm going to be told.  If it's not they're making a good job of making me think it is.  Anyway...I'm doing good and doing as much as I can.  Tonight I'm gigging :)

All the best Barbm xx