Problems with Carbo

[lisahammo]

Hi everyone

I haven't really posted for awhile, but have been checking in once in a while. I have been having Herceptin/Taxol/Carbo for the past 4 months to try to clear the 3 tumours in my liver. I have really struggled this time, and found the Carbo very tough going. My bloods have been all over the place, and I have had my chemos cancelled repeatedly because of this. It was cancelled again last Monday, due to my platelets being down to 54. I have now asked to be taken off the Carbo and see how I go. My liver levels are coming down, so hopefully the Taxol will continue the work for me. Has anyone else had lots of problems with blood levels since taking the Carbo? I've just read Maryann's post, and am devastated for her, and worried for myself now. Not what you need on top of everything else. Thanks everyone, and try to stay focused during this incredibly sad time for us all.

Love Lisa

[R.B.]

I see from your posts that you take fish oil.

Do you try and balance your omega threes and sixes etc.

IF it has not been on your adgenda, and can appreciate that with all the treatment etc finding the energy and time for something else may be difficult maybe you might like to consider it as an adjunct to your chosen treatment.

I know it sounds unlikely and there is no guarantee it will help beyond improving general health but if other things are not working is looking at digestion balancing the omega threes and sixes not worth a look.

There are lots of posts accessible from the search facility on the purple bar above.

Here is one that was interesting, but must not be taken out of context

http://www.her2support.org/vbulletin...ught+provoking

I sincerely appologise if you have already looked at this.

Significant dietary changes should be discussed with your advisors.


RB

[Helen]

I had Herceptin/Taxotere/Carboplatin combination. Although my blood levels were low, it never came down to a point where my onc was concerned. I hope someone in the board will have a better answer for you.

Best wishes,
Helen

[jhandley]

take reishi mushroom extract (Immune support) 2 days after chemo and stop 3 days before next one this will up white blood count. Take Magnesium for platelets. See Gina Popp's posts re this.

Jackie

[Chelee]

Hi Lisa, I am on Herceptin, Taxotere, & Carb. I have been on this since Feb. 06. I am on my fifth cycle as of LAST Monday. As far as the Carbpotin I haven't had any major problems that I know of.

I just recently got on to my oncologist because I felt she wasn't keeping me updated on my counts and other things. That same day she tells me my liver function had been a bit high but they were keeping an eye on it. I wanted to know HOW LONG it had been high? She said just a couple times. (Here I had been telling her for several months that my liver always hurts after my full cycle of chemo...now I wonder if it might be due to Carb and not my taxotere like I orignally thought?)

Never enough to stop or delay my treatments though. (Knock on wood.)

Again, this was my fifth treatment of herceptin, taxotere, & Carbpotin and my platelet was down to 98 a while ago. That was the lowest I have seen it and was concerned. It had been staying in a semi decent range considering all the chemo drugs. A week after my platelet count hit 98....it did go back up to 125.

When my rbc, wbc, hemogobin, etc are out of whack....my oncologist and infusion nurse always tell me its the Taxotere. I have heard the same about the Taxol. (But how are we to know which one for sure does it?)

What did your oncologist say when you asked to be taken off the Carb? Did they agree that is was most likely the problem? At least this way you will find out if your counts straighten up real fast after stopping the Carb. I hope things get better for you.

Chelee

[lisahammo]

Had another blood test today. No chemo again. My platelets only 59, up one from last week, and this was a week without chemo. My onc says that all her patients on Carbo battle with blood count problems. WE have decided to have one week of Herceptin/Taxol, one week off, then chemo again, one week off, then throw in a little Carbo, and see how that works.

I also forgot to mention in my original post, that I have also been having what I believe have been allergic reactions to the Carbo. About 3 hours after getting home from treatment, my temp goes up to 38, I start to shake, and ache all over. This has happened 3 times now. I usually take some Panadol, and go to bed, and feel a bit lousy the next day, but have to go in and have IV antibiotics, just in case.

Thanks everyone.

Love Lisa

[madubois63]

Lisa - What happened to me is on the rare side, but I am just not liking your reaction to the carbo. A while back, they gave me a three week dose of chemo (which I am not use to - I usually took it in weekly doses). When they gave me the chemo, I passed out when we got to the carbo. My body said no more...not happening. I am notorious for hearing the signs, but not really listening. There are two signs of acute myeloid leukemia that I didn't understand before, but know now (besides the most obvious being dropping counts). If you are having sharp pains in the left side under the rib cage, that is the spleen. When the blood cells are dying off rapidly (leukemia) they get filtered through the spleen and this can enlarge the spleen and cause pain (not very technical, but broken down to the basics). I had the sharp pains - didn't listen. They were brief and not so close together so I just brushed it off. Now the second sign for me (or third - depending on how you look at it) was feeling discomfort in my skeleton. When I would cough, I could feel it in my bones around my neck, shoulders and skull. Sounds weird, but if you felt it you'd know what I mean. I thought it was just part of the sinus infection/crappy feeling. Sometimes when I would use my arms to get up and pull my weight, I would feel like my bones are just going to snap. I don't want to scare you or anyone else, I just want to educate. I kept on taking the chemo even though in the back of my mind I knew it was time to stop - intuition?? Anyway, if you are scared, then ask (demand) a bone marrow biopsy to put your mind at ease. I am sure AML is not what you have, but sometimes we have to listen our bodies more than the ALL KNOWING ONCOLOGIST and take a chemo vacation.
..·´¨¨)) -:¦:-
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((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

[Chelee]

This kind of concerns me since I am on Carb with my chemo regimen. I have been told so many times that the least of my concerns was the Carbpotin....now I am hearing from you two that there is a real concern. (Actually, I realize with all these drugs there is always a risk or some problem.) But I was assured that if I had any problems...it would NOT be the Carb. (Yeah right!)

Now MaryAnn posts about her problems with Carb. That is really scary as one of my BIGGEST complaints to my oncologist (Both of them) is telling them how BAD it hurts after I recieve my chemo which includes Carb that it HURTS really bad where my spleen and liver are! Every single time I have my full cycle of chemo. They both said they don't know what causes that and for me not to worry. (They could TRY to find out what is causing it I would think instead of dismissing it.)

I kept telling my husband that it feels like my spleen and liver are being destroyed after I have my full cycle infuison.
Thanks for posting about this MaryAnn. I know you aren't trying to worry or stress anyone out...but by sharing your knowledge of what can happen...and the possible side affects could save some of us from another nightmare. I am going to make sure I get my oncologist attention this time about that pain I am having after my chemo which includes the Carb. I have had five cycles and have one more...I am concerned now. I ALWAYS have pain on the left side where the spleen is.

I have also complained alot about my shoulders & upper back hurting really bad! And both sides of my neck hurt...it starts at the bottom of my neck where the bones are and runs UP the neck. Its painful. I am use to the aches and pains in the other parts of my body since chemo...but I have really been concerned about all this new pain in upper part of body.



You are SO RIGHT MaryAnn about listening to our bodies. I know this pain on BOTH sides has been really worrying me to know end...I am tired of them ignoring it. I even told them both I wouldn't worry so much...but the pain is always a sharp pain on each side where major organs are. I know our oncologist sees an awful lot of people...and they hear so many complaints and problems...but they really need to LISTEN and take us seriously. Its their job to prevent us from any added problems that they could of prevented had they listened.


Chelee

[lisahammo]

Thank you for your post, Maryann. Even though you have so much to deal with yourself, I really appreciate it. I absolutely agree with you about knowledge. I try to arm myself with knowledge, but do not sit around looking for the signs, or waiting for them to appear. It is just handy to know what to look for if the need arises.

My onc assured me that she was not worried about leukemia, however, if my platelets had dropped next week, she would do a bone marrow biopsy. I agree that my body is crying out for a rest from chemo. This is my third bout of chemo in 2 1/2 years, so we are really cutting back on the Taxol, and carbo only in a small dose once every 4 to 6 weeks.

Good luck to you Maryann. I will be thinking of you. I know you have plenty of other things to think about, but is there anyway you can let us know how you are going during your next lot of treatment? Everything will be crossed for you.

Love Lisa

[madubois63]

Lisa - If you do the bone marrow biopsy, take an Ativan a half hour before you get to the doctors office and a pain killer 5 -10 minutes before you get there. Have someone else drive of course! You will not feel a thing (or care). I hope you won't need to do this because your counts are shooting up as we speak!!!!

I see the new doc this afternoon. I will post an update. I hear the private rooms have computers...

[madubois63]

>>one of my BIGGEST complaints to my oncologist (Both of them) is telling them how BAD it hurts after I receive my chemo which includes Carb that it HURTS really bad where my spleen and liver are! Every single time I have my full cycle of chemo. They both said they don't know what causes that and for me not to worry. (They could TRY to find out what is causing it I would think instead of dismissing it.)<<

Make your doctors listen, or get new doctors that will take your pain and fears seriously. Have you had an MRI, CAT or PET scan lately? Last I looked, YOU were the boss paying THEM. They need to find out why you are experiencing pain. Looks like you have employees that are NOT doing thier job....



..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

[Patty H]

I had taxotere and carbo with herceptin. It seem to work for my lung mets but I started having a reaction to the carbo. The first time I noticed my face was red after we got home and my husband and I just laughed about it saying I sure didn't need any blush. But then it started happening sooner and sooner. So by the sixth treatement I started turning red as soon as they started it. I was on pre-meds but it didn't seem to stop the reaction. So we stopped it. We don't know if it was the combo or the taxotere or carbo that seemed to be working for my mets. I am stabble for now, but if I need to go back on chemo we are going to try just the taxotere. Patty H

[lisahammo]

Hi Patty

I also get the high color look. It starts before I leave the hospital, and lasts for 2 days. He looks like you are constantly blushing.

Lisa