Anyone on just Taxotere and Cytoxan?
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Dearest Sisters, i have been off of the BC Board for a very long time. I had one chemo )Cytoxen and Taxotere) and i wanted to update anyone interested about my chemo treatment and the terrible failue of not just of the treatment but by my first oncologist who 'administered care.'. I am four months out of the only chemo treatment I was given-a combo of cytox and taxotere. Within three to four days I became absolutely deathly ill. Despite all we have done, I have not been able to recover since that treatment. I am able to get out once in a while during the week, but mostly I lie in bed pretty much each day on antibiotics, fluids and I drink most of my food. My PCP is in a place where he feels like he wants to begin a post chemo damage assesment because he is now sure that I am not getting better (and it is not because i am depressed-the category everyone wants to dump us in). Chemo, for me was and is a life changing event. I will never do it again and would not have done it had i know then what I know now! I am no longer a candidate for radiation and tamoxifin. i write to let others know, most women will have no trouble with CT-i am told. Unfortuantely, I am not one of them. The damage done to me by chemo is profound and lasting. In the initial tests that are coming back this week, i am finding out that my heart is permanently damaged; my thyroid is destroyed by the chemo and the thyroid has not been working for several months; i am not producing vitamin D and I am suffering from perniscious anemia. My heart will not stabilize and they are trying to find a combo of meds that works but i a not hopeful. I have gained 25 pounds of water weight. i guess my message for women looking at chemo-PLEASE RESEARCH!!!! Find out if the risk is truly worth the treatment. My docs are now telling me that it is not tha cancer that will kill me, but the damge done by the chemo. i now understand that i was never healthy enough for chemo despite the "rah rah" speeches i got from my fist ONC team. I had an oncologist (well respected guy) who pushed it until i did it as adjunctive therapy (i have other issues and was told that chemo was my best bet to improve my odds of not having a reccurance of cancer). i became terribly ill about 4-5 days after the first chemo-hair fell out; skin bubbled up and started falling off: nails turn black and fell out; and gastro system went south.i could not shake numerous bouts of pneumonia. i had terrible skin infections and those were the minor issues!! Biggest issue is that the minute I became ill from treatment, my ONC abandoned me, only he did not tell me that he was abandoning me. He strung me along and i believe he worked as hard as he could to keep me a secret to protect his reputation. I finally did get second and third opinions and am told that my liver functions were so poor that my body likely could not process out the Taxotere. I am told i am on three drugs that inhibit metabolism of Taxotere and that i was never a candidate for chemo. i am permanently affected (looking for an attorney but no luck so far). I was told this week that i will likely have a 'cardiac event' within the year because of the chemo. PLEASE UNDERSTAND, THIS IS NOT A PITY PARTY FOR ME. PLEASE LADIES BE SO VERY CAREFUL ABOUT THE CHOICES YOU MAKE IN CANCER TREATMENT. GET SECOND AND THIRD OPINIONS BEFORE YOU DO TREATMENT OF ANY KIND. There will be cancer treatments you take that will permanently affect your body and your life. Again most of you will be OK. For me, there were choices I made based on the info I had were terrbily wrong and they CANNOT BE UNDONE! I was told at the time and i believed my ONC that these were the only choices I had. i was wrong to believe him. Whatever, I will never be the same. AGAIN, THIS IS NOT A PITY PARTY-I WANT WOMEN TO UNDERSTAND THAT I KNOW THAT A CANCER DIAGNOSIS IS SO VERY CRIPPLING AND FRIGHTENING-BUT THERE ARE THINGS WORSE THAN CANCER-AND THEY ARE IN THE TREATMENT OF CANCER! Please be so very careful. I went from being a healthy 57 year old woman who saltwater fished everyday, was a wildlife photographer and ran an art gallery..... to being a complete invalid. I loved my life pre chemo but my life is forever changed in just four months. Lord, we are victims of such a terrible disease but in the hands of the wrong oncologist, we are sunk!! Trust your guts-When i found I had cancer, i just wanted it out of me and would do anything. i so pray and wish so very much more for all of you. you may not know it, but you are the bravest women i have ever known!! i know you are strong and if you are having problems post chemo (CT) and you get to the point where docs are telling you that you are 'depressed' because they cannot find anything wrong in the standard lab testing-KEEP PUSHING UNTIL YOU GET THE ANSWERS YOU DESERVE. i was and continue to be so exhausted i cannot get out of bed most of the time-i cannot drive because of the brain damage done from chemo. i can only thank God that my PCP decided to begin a full assessment last week- I am trying so hard to look good and live a normal life and i cannot.I now hide out a lot because I am ashamed that i cannot do much anymore. So, this week, I am on meds to try to jump start my thyroid; meds to get Vit D (50000 units a week) meds for iron; and meds for heart damage (my BP won't stabilize). I am bleeding internally. In the next few months we will begin work on assessing neurological damage done (i have peripheral neuropathy now). It goes on. Enuf from me-God bless you all and please be proactive in your treatment!!!! Or get someone to do it for you. i know how horriblel it is to have cancer and try to advocate for oneself. I still have enormous resentment because of some truly nasty things that went on -on this Board. There were some women who bgan to bully me in PM's bec they thought I was being hystrionic or malingering-that nooone could be that ill. So the badmouthing started. I KNOW NOONE WANTS TO HEAR A STORY LIKE MINE BEC I AM A FAILURE IN CANCER TREATMENT. BUT, If MY STORY can help to protect one women from a 'chemo death" it will be important enuf for me. It is your body and your life-make wise choices because the choice you make will be permanent. i am very conflicted about writing this bec we all need hope so very desperately. But sometimes,it all goes so very wrong. i have been to the best experts in the past four months. I am now told that there will never be a chemical option for me (including radiation) and that I now face a double mastectomy. I do not know if I will write much more on BC.org-i simply do not have the strength most of the time, but for those of you who remember me, i wanted to update you all and wish you the best. Lots of Love SV
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I am so sorry that all of this has happened to you during chemotherapy. Most of us will never have to endure this type of reaction to chemotherapy. I am sorry it happened to you. I will keep you in my thoughts and prayers as you go through this storm and beyond. Hugs and prayers to you.
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SV:
My heart goes out to you! You are not a failure at recovery, you're just needing to find a new plan of attack! I'm so sorry for all your experiences, here at BCO and with your health. We go thru enough with bc and trying to survive, please don't let yourself be so burdened by these experiences that you stay away from us. We care and we are here for you. I am not perfect, nor do I want to be....that's what makes us all so interesting! Please come back to us anytime and I'm praying that it will be soon and for you to have strength and peace and comfort.
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SV ~ Huge Hugggs to you !!! I do not know who bullied you off these boards but I am so sorry they did that to you. It is bad enough to try to fight this disease , you should not have to fight with people in here too.
I too have done alot of research about what I call the " Cancer Business/Industry " and have my own opinions about it all and my opinions are not popular with everyone either. I have a whole nw perspective of it.
I also am one who does not think I should of had TC...if chemo at all. I did my research after I had the chemo and from all I have read the TC is not something I should of had...and Yes I confronted my ONC and he stuumered and stammered and said well...it is complicated...he had no real answer as to why he chose it for me. I think it was $$$$...but that is just my opinion. I too NOW have neuropathy and am seeing a nuerologist. My body will not absorb B12 anymore so I have to get shots regularly. I was not able to finish my chemo due to bad reactions but I did get 3 out of the 4 tx.
Time will only tell what the future holds now. I can only do my best to live a healthy lifestyle and make healthy choices.
I will keep you in my prayers and wish you all the best! Be gentle to yourself...you deserve it.
Peace and Blessings
Catori
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Oh SV, I am SO SORRY and touched to hear your story. I am sending healing energy your way...I hope with all my heart that you will recover fully from this. And I thank you for being brave enough to share your story in order to help other women.
And you will never get any bullying from this corner. I don't understand it at all.
Hugs and blessings,
Toni0 -
StillVerticle - so sorry to hear how badly TC has affected you. I was very glad to see you posting again as I've been wondering about you. Take care and I wish you all the best. Please keep in touch with us!
Sherri
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Ladies, You know, when i was in one of my ER visits (going like x3 a week) for dehydration and just so very ill, a nurse said something haunting to me, "She said that chemo is BIG BUSINESS and people are making a lot of money." She also said that she sees chemo victims like me in the ER all of the time who are terribly ill. And that the ONCS give the chemo and "leave us to handle the aftermath." I I was so naive and was stunned by her comments but I do not doubt them now. The ER docs could not even reach my ONC!! I had over 40 visits to the ER bec I could not stop vomiting or stop other SE's from chemo, it was that bad. ((((BIG HUGS))) SV
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SV - So sorry about your reaction to TC. Hang in there. I know a woman who had neuropathy so bad that she was in a wheelchair. They told her she'd never walk again. And that is only one of many reactions she had. The drugs just hit her body so hard. But she was up again and walking in about a year. So take heart. Anything can happen, and our bodies are amazing. Be good to your wonderful self, and heal. You are in my prayers.
XO, Mary
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SV~ I am just curious and hope I am not overstepping a boundry here...if so just tell me and I will not be offended
.My question is....have you sought legal counsel concerning this situation with your Onc? If you can not get an attorney , perhaps take your story to the media,CNN,Dateline,20/20...I would think there is a reporter who would be very interested in your story if not an attorney or 2. It is a story that I would think would open up investigations, and sadly I am pretty sure you will see many more who have experienced the same type of things .
I wish for you a full complete recovery, renewed hope and strength. (((Huggs)))
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Dear Catori, I am looking at legal counsel now but no luck. i have sent 'reports' to over 6 medical mal attorneys. It is very difficult as the only cases they will take are ones where the surgeon amputated the wrong leg. Just very tough, but i will keep trying. Thanks all for your support. ((((BIG HUGS))) SV
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Prayers and good vibes go out to our friend, SV...
Brenda
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SV, wondering how you were doing, thanks for stopping in, think of you often. I'm in the midst of making decision about some testing, and let me tell you, your experience with TC and mine has left me with a very good impression of how those who do the orders go on with their lives, and we're left with the SE's. You do everyone a service by reminding us that even if the bad SE's happen to a minority of us, they are really bad. So, thank you. Please keep letting us know how you are doing.
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SV- My hugs to you..... Wishing you well. In my htoughts and prayers.
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{{{SV}}}, so sorry to hear your story. Wish you well. You are in my thoughts.
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Dear TC sisters, I've had 5 out of 6 treatments and have discovered an area the size of a dime on my tongue today that turned black. Is this "black hairy tongue"? Should I do anything about it?
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ariesrottie (Donna) - sorry I didn't respond to your question earlier. Yes, that's correct, I'm triple negative so no further treatment. I'm assuming you are hormone positive? If so, your Onc will probably put you on a hormone therapy like Tamoxifen. I'm not too familiar with it but I'm sure there are others on this thread would know. Good luck!
Sherri
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ariesrottie (Donna) - sorry I didn't respond to your question earlier. Yes, that's correct, I'm triple negative so no further treatment. I'm assuming you are hormone positive? If so, your Onc will probably put you on a hormone therapy like Tamoxifen. I'm not too familiar with it but I'm sure there are others on this thread would know. Good luck!
Sherri
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did anyones hair grow back while still getting chemo? My hair is coming back in and I am half way done...go for #3 this week. Where it first fell out it is white and dry (chemo hair or what I have read that it looks like). The back of my head is my hair and the sides seem to be as well. Will it fall out again? It is really strange?
Any help????????????????
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SV, so sorry to hear this is still going so badly for you.
I am a bit confused, though, because I thought when you first posted about this that you had actually received an overdose of the chemo drugs and that you had many of those horrible side effects from the first day. Did they ever admit to the overdosing? Or am I mixing your horrible experience with someone else.
I, too, hope you have a good and trustworthy attorney.
Hugs to you and will be thinking of you.
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Hi All,
I start TC x 4 this Friday. I've seen a few posts about starting a steroid the day before chemo. I start Friday and my onc has not mentioned starting a steroid on Thurs. Does everyone get the steriod? Has anyone else started TC without it? Also, my onc did mention Nuelasta shots. I see some people taking Clariten to fight off Nuelasta SE's. When do you start the Clariten for that? Any advice would be great! Thanks.
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Hey Golfer Girl~ I am no expert at this yet as I have only had Round 1 but I was prescribed Decadron (aka dexamethasons) 4mg. to be take 2x daily the day before, the day of and the day after chemo. My onc said it was necessary (and actually said she wouldn't be able to give me the treatment if I didn't take it). I believe it is to help with swelling/fluid retention that comes from the chemo infusion. The chemo nurse confirmed that I had taken it before she put in my IV. I would DEFINITELY call your onc office. BTW I didn't take Claritin or Neulasta but many do. Also, I would check out the "shopping list" on Before, During and After Chemo thread. IT IS GREAT and if I would have checked it BEFORE round 1 I would have saved my hubby a couple trips to CVS....
This board is great! Glad you found it!
We are all in this together!0 -
Golfer Girl - I did TC x4 and took 8 mg twice daily of Decadron (Dexamethesone) starting the day before chemo for three days, (total of 16 mg for three days). I took Claritin shortly before getting the Neulasta shot and for the next four days (total of 5 days) for each round and had little or no bone pain. Good luck!
Ladies currently going through TC, I'm pleased to say my hair is growing in nicely. It's still pretty short but today I went to an exercise class and took off my wig. I finished on Feb. 8th. I just wanted to give you some inspiration!
Hang in there.
Sherri
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Golfer girl,
My onc only gives me the steroids on the day of chemo as premeds (IV before the TC) together with Benadryl. He doesn't feel that any more than that is necessary, and I agree with him. I don't take any afterwards, either. I've had 5 out of 6 and so far have been doing well.
I also have not taken any claritin for the Neulasta shots. Only had real bone pain after the first round (and that was mild). The other 4 have been eventless. I did have a slight fever (99.4) the evening of the latest round of Neulasta, but it only lasted an hour or two.
Everyone responds differently so listen to your body. Best wishes!
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HI Arubajan
I have to decide this week if I am going to go the 4 trmts of T/C. I am trying to read all I can...and after reading your post, I am not able to locate the "shopping list" in the before, during and after chemo thread. Can you help me out please? Thanks alot.
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Golfer: My first tx of TC occured on the day I saw the onc, so I didn't have dexe beforehand. They gave me steroids in the IV. I reacted negatively to the IV benadryl the first time, so they didn't give it to me beyond that first tx. I took claritin with naproxen (aleve) the day before and 4 days after the neulasta. I didn't take it the full 4 days the first tx, and had bad pelvic bone pain. Other times, just stuffy head, flu-type symptoms associated with neulasta. Different docs give different anti-nausea meds.
As for shopping, have otcs for constipation and/or diarrhea & heartburn. Drink LOTS of water.
Thanks for the encouragement, Sherri, on the hair.
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jillincc:
Go to Forum Index, then look for Chemotherapy, Before, During and After and click on that....there is a subtopic under that with several good chemo readiness topics.
Make sure you have plastic utensils, easy foods like pudding, applesauce, yogurt, Magic Mouthwash (thru pharmacy) and/or Biotene mouthrinse. Drink ice water or keep ice chips in your mouth during infusion to help prevent mouth sores.
Best wishes to you, my dear....and to everyone beginning treatments....you are all in my thoughts and prayers for easy treatments and minimal side effects.
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Dear Golpher Gal', Yes i am the same person. Noone has admitted to an overdose but there is somuch I need to gather and still just too ill to do it. A chapel hill doc who gave me a second opinion thought that the dose that was given to me was the correct dose but he was not sure. Truly, an attorney needs to sort this out. And I had black sores appear in my mouth and on my skin-get them checked ASAP. i had the majik mouthwash and all VEry ill today and the breast they did surgery on has begun to hurt terribly and is inflamed. Need to get to doc tomorrow. Truly not sure I will recover from chemo. ((((BLESSINGS TO ALL))) SV
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(((((SV)))))
Gentle Hugs & Prayers for you.....praying for comfort, strength and considerate doctors and legal advocates who will listen to you. I'm so glad you are letting us know how you're doing.....I hope you get some relief soon......
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Hi All, Thanks for the good advice. I left a message with my onc about the steriods to see if I need to pick up a prescription or if I will be geting them in the IV. I read the shopping list and have started picking up things I might need, but am hoping I won't! Saw the dentist for a pre-chemo cleaning yesterday and he loaded me up with Biotene mouthwash, toothpaste and ultra soft toothbrushes. I'm hoping with all this prep, there won't be any surprises!
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