ANYONE NOT TAKING STEROIDS WITH TAXOL/HERCEPTIN/CARBOPLATIN

[Lyn]

I haven't been taking steroids the day before and for 2 days afterwards so I asked if I could drop it in the premeds but the nurse was concerned about a bad reaction, so curious if anyone else has dropped them, I had my 7th today and neck still getting smaller and nearly over bad burn from radiation but do not know how many rounds I should have so my onc doesn't know either because I asked for this coctail, any suggestions.

Love & Hugs Lyn

[lyn]

My advice?
don't do it.
I was kind of remiss in taking the steroids before and after, but did take them the day of at the dr's office. I don't know if it was a coincidence or not, but I developed an allergic reaction to carboplatin and severe bilateral effusions to the point that I am now on oxygen.
Again, don't know if there was a connection, but if I could do it again, I would take the steroids as a precaution.
el

[Christine]

Lyn,
Perhaps you could ask if you can lower the dose, and ween off it afterwards. Ask your Onc, not the nurse. She would need the Dr's OK.

[Lyn]

Thanks you could be right. I mentioned this to my brother, and said that my night blindness while driving seems to get better and he said it happened to him when he was taking them with a diabetes medication, so maybe has one good point, but with my hair really thinned out now I look like a gold fish with hair, Nemo I believe, the hair I can deal with but the face is a real put off, but everyone says it doesn't matter as long as I am well. My onc finally asked today when I was going to see him and sit down and discuss me properly since I always tell him what I want and he doesn't really know how long I should be on it because I haven't told him yet, also have to plan some scans, obviously I will need a MRI seeing the scans over the last 12 months and bloods said there was nothing wrong with me and it was under theirs and my nose all the time, so it will be an interesting consultation because me being me have noticed that there are a lot of patients having my chemo coctail at the moment, I or I should say we should get a consultation fee.

Love & Hugs Lyn

[Lyn]

Thanks Christine, it is 4.25 in the morning now and another reason I am not keen on the steroid, it was weird because I got my furnegon anti-histamine at the same time and I dosed off during treatment, but wide awake now and I have to have an echo at 10.00am so I have to get some zzzz's soon. I will ask him or find some data to give him, his nurse is real cautious, she has seen some bad reactions in her time.

Love & Hugs Lyn

[Steph N]

Hey Womyn!
You are doing great!
I have a friend who had a reaction to carboplatin and this is one of the last drugs they can give her as she has had so many. She now gets her carbo over a period of ALL DAY - talk about long infusion. They give her just a little at a time with lots of saline and watch her - then 20 minutes later she can get a little more.
The drug is working - so she puts up with this routine.
So, if it were me - I would not risk the reaction seeing what my friend is having to deal with to stay on a drug that is helping her.

[Barbara]

Lyn:

Christine has a good suggestion. With my first chemo my oncologist ordered the standard doseage of IV dexamethasone (IV steroid). I had a headache for three days. I mentioned this the next time I saw my oncologist and he cut the dose by almost 2/3s and I felt much better (small headache and more sleep) and I did not have any bad chemo side affects. The oral dexamethoazone before Taxol only gave me a mild headache and some minor sleep problems. I found that when the steroid wore off my blood pressure dropped quite low so I would not want to risk treatment without some steriods.

[Kitty]

Lyn,

Are you taking this weekly? My premeds were given intravenously and were decadron, kitrel, tagamet and benadryl. Easy to take but yes, your face does resemble a cabbage patch kid and you will be up most of the night unless you take some benadryl which will help you sleep. The puffy face goes away quickly once treatment is over. Now we saw almost total reduction after 11 weeks but I continued with the taxol/carboplatin/herceptin regimen for a total of 32 weeks just to be on the safe side. I am totally NED and am on maintenance weekly herceptin. I would advise you keep on your treatment for a minimum of 24 weeks. You may need shots for red blood cells down the line, but it is well worth it. I feel great and have no problems. By the way my treatment was constant - not 3 weeks of tch and 1 of herceptin only, but 32 weeks of tch. Hang in there!
Kitty

[lauren]

I was on Taxotere and Herceptin in the adjuvant setting, and I did not take ANY premeds. I got a low dose of decadron on the day of the infusion, but that's it.

I did have a reaction to the first Herceptin treatment - the typical one where you get really bad chills - and they iv'd me with decadron and benadryl. And then I never took any decadron again. I took benadryl once or twice more, but I had a reaction to that too - gave me restless legs. So...they gave me atavan. That did the trick to nip the restlegs legs in the bud.

My point is: if your doctor would consent, I would try to avoid pre-meds and keep the decadron that you take to a minimum. If your doctor agrees, then I would venture to say that this is safe. To me, it's a quality of life thing. Decadron has side effects that I was not willing to deal with if I did not have to.

[Lyn]

Hi, I am on weekly, so thanks girls, I think I have solved part of the problem I lashed out today and bought a wig with a trendy hair style, you know the ones with the highlights blonde brown and it hangs all over my face, I got some reactions, a bit akward trying to put it on with my fractured shoulder by myself, but the impression was it was different and they did not, not like it, my sister the biggest critic liked it because it was similar to her hair colour she pays a fortune for to maintain and it is just above my shoulder so I shouldn't get the friction wear, had a good tip today for looking after wigs, a wig specialist who looks after his models said to just wash them in fabric softner he did say Comfort brand but I couldn't find that one but bought a decent one, so I learn something every day. I will try the sleep medicine.

Love & Hugs Lyn

[Cathy W]

Lyn,

I have been doing carbo/taxotere/herceptin since February. I too have problems with the decadron. When we switched my chemo to 3 weeks on, one week off (just herceptin) I stopped taking the decadron pills and now just get the infusion the day of. This last week I noticed that I did not turn red as a lobster for 24 hours after the chemo so maybe my body is getting used to it??? I also asked my onc about lowering the dose of the decadron and he didn't want to do it because of the possible side effects. I hate the steroids because I get really emotional for 24-48 hours after the infusion. I do think the carbo has something to do with it. This is my 4th week off that stuff (I now do xomeda, taxotere and herceptin).
Cathy

[Kitty]

Lyn,

That sounds like a fun wig...now's a good time to try something new and different. It's funny but I have found you notice changes in your looks more than anyone else does - I was sure when I lost my eyelashes that everyone would notice. Quite the contrary, it was not noticed unless I pointed it out. Anyhow, try the benadryl (or equivalent) the night of treatment and you should get some sleep. If you have ever witnessed someone who has stopped breathing due to a severe reaction to taxol, it would make a believer of premeds out of you. You can develop a reaction at any time during treatment no matter how many times you have had it before. In my book, it is a small price to pay to keep that from happening. Remember it is a short term inconvenience for something that has a potential for long term NED. Take care and enjoy your wig.

Kitty

[Lyn]

Hi Kitty, I can't remember if you said what you had the trio for, my onc is going to ask and I have chemo brain, our large hospital is actually doing a study to see if chemo effects concentration, dahhhhh, I don't know about any one else but my conversations seem like a word association test, I never seem to say what I mean when it comes out of my mouth.

Love & Hugs Lyn

[Kitty]

Hi Lyn,

Hey we all get chemo brain but it does get better after treatment is over. My combo was for liver mets, the largest being 6.8 cm. The carboplatin is very synergistic with herceptin with fewer side affects than cisplatin. Weekly treatments are so much easier on your system and the latest findings from ASCO was that weekly taxol worked much better than every 3 weeks. Good luck!!!!!
Kitty

[Lyn]

Thanks for the info, has your friend had Iressa or Gemzar? Apparently one of the hercpetin vaccines is a combination of Herceptin/Iressa in tablet form, I hope your friend conquers it this time.

Love & Hugs Lyn