Help!

Anonymous

My best to Faith first off and I am so sorry to change topics. Ladies I am not a wimp, but had my first Chemo on thursday. Combo of Cytoxan and Taxotere. I am so ill I cannot stand up for any length of time. I am chemically burned down to the tip of my tongue; cannot think; move; walk; talk; trapped in the house.Is this normal? When does it go away? If I stop chemo (option given to me if I had a bad reaction) will my hair still fall out in a few weeks? LM with my onc but have heard nothing. If this is what the next half year of my life looks like, I do not know what I am going to do. I then have radiation tx after that. Am I looking at a year of being dibilitated. I am so sorry to whine as I know others are in much worse shape, but this is really scaring me. Pain in large joints like hips and back is thru the roof and I am on Oxy and a muscle relaxant. It is like this has triggered my fibromyalgia, asthma, RA and all the other cr#ppy things I have had and learned to manage for 20 years. Just feel far too old for this and very tired. My Mom just passed away, Dad had a stroke and now I have cancer. Too much grief on my plate and no way to dump. So sorry to whine and I usually am not in the dumps but gees. This is really getting to me today.

psp2pdx

Oh dear you are in a mess.  My doctor sent me home with rx for nausea, ativan for anxiety.  I was  sick but not right away.  You have other chemo options..........Zofran worked for the nausea.

I have asthma, joint and tendon issues and psoriasis.  Most of the joint pain went away during chemo and then came back but not as bad.

My tx was AC plus35 radiation tx but I am TN.  Your doctor I hope has called back.  I'm so sorry you are on this roller coaster ride.  You can get through it.  Please keep trying to get help.  I wish you better days ahead.  

pitanga

Still Verticle,

I´m sorry you are feeling so crappy. That´s chemo for you. Myself, I felt like a dishrag for the 1st 3 months (Adriamyacin + Cytoxan) and then just pooped for the next 3 while on Taxol. Are you on taxol? from the bone pain you describe it sounds like it. There are pain meds you can take. And the pain usually subsides within a week after treatment. You are grieving from your mother´s death, plus your father´s illness to contend with. That also take its toll on energy level and pain perception.

Unfortunately, even if you stop chemo now your hair will probably still fall out or at least thin. Mine did on day 12 or something after 1st chemo. But it depends on the kind of chemo. And when you stop it it will grow back in no time.

I see you are stage 1 with no lymph nodes and er+. I am wondering why your onc gave chemo in the first place? was your tumor high grade?  if so, chemo is probably a good route. you do not want to take chances with an aggressive cancer. If not, maybe you would do better on an aromatase inhibitor or tamoxifen?

In the meantime, give yourself the luxury of lounging. Now is not the time to beat yourself up for being a couch potato. It comes with the territory. But then when chemo ends, suddenly you feel better!

Best wishes,

Lisa 

chainsawz

I am so sorry the chemo is hitting you so hard....it hit me like ton of bricks, too.  I drank tons of water the first few days after each infusion to help flush it out quicker.  I know others who go back to the clinic for a few days after to get hydration and IV anti nausea to help them.  Just be very vocal with your onc because they should be working to help you with your SE.  You will make it thru this and it will be much better once they help with your side effects.  I had taxotere and it is harsh stuff, but each infusion my family would tell me "if it's doing this to you, imagine what it is doing to cancer"....that helped me :>   Hang in there!

cary1

To state the obvious, chemo is a bitch. I had T/C for my cycles as well and the only thing I can advise is what was already stated. Drink tons of water, it really makes a difference. Unfortunately, I believe with T/C the hair loss is pretty much universal. Mine began falling out exactly 2 weeks after the first infusion and was pretty much gone in 3 days. You didn't say if you were getting a Neulasta shot the day after infusions. I know that has caused severe joint pain in some women. It gave me bad headaches that lasted forever. I knew it was the Neulasta, not the chemo, because I experimented one cycle with not getting the shot. Making some kind of effort to walk around may make you feel better, as impossible as that seems. If you can manage to just go outside for some air and walk around the house a couple of times periodically. Easier said than done I know, but for me it helped to get out. How is your sleep? The good news about chemo is there are things one can do to make it better, the bad news, and it has to be said, is that the effects are often quite cumulative as it builds in your system. By my 4th one, I really thought I wouldn't manage and all the SE's that I did get got worse. But you do recover (with maybe some vestiges like fogginess) and then your radiation will seem almost a respite! At least that is how I felt. Yes, I got burned, but I could cope with that much better than the chemo SE's, which seemed to have a real perversity to them. I'll echo the others. Tell your onc what's going on and also talk to the nurses. They often have the best hands-on experience of what people can do to cope. Good luck!

Kim09

Definitely discuss this with your onc.  I never had a reaction like this when I was on Taxotere & Cytoxan. 

mbtlcsw01

Still Verticle:  My onc told me 50% of women are allergic to Taxotere.  I had a terrible reaction to it on the 2nd-4th treatment, but because it is the gold standard, I was willing to take it.  Did you have an Oncotype test done on your tumor?  I am Stage 1 Grade 3 with no node involvement, but being grade 3 and having the oncotype type test done, we were sure I did need chemo.  Like everyone else, hang in there, just take care of yourself.  I called it my out of body experience, but eventually, my brain returned to my body.

Brendatrue

YIKES! You are going through some tough side effects. I had T/C as well (4 cycles, March through May of last year), and I also suffered many tough side effects. I was very proactive with my onc and his staff, and I became less reluctant to taking meds because they helped me deal with all the side effects. Yes, I felt like a walking pharmacy at times, but I also did my best to rest as much as I needed, drink as many fluids as I could stand (and mintwater really helped with the metallic taste in my mouth as did green tea), eat anything that made me happy that my mouth could tolerate (frozen yogurt became my best friend), gently exercise (some days just a walk to my mailbox or stretching), distract myself with things I enjoyed (movies). I agree with chainsawz: I decided if the side effects were that intense that T/C was kicking cancer's butt, too. However, I also came to that decision when I had done all the research I could in order to know that T/C was the best treatment choice for me and my onc & I had a gritty, bare to the bones conversation about my illness, my prognosis, and my life goals.

You seem very aware that grief is affecting how you are coping with all this. Who would not be grieving, after a parent dies, another has a stroke, and serious illness and all that it represents and affects enter the picture? Of course you can come here and "dump" as well as receive support from others, but I also am wondering who is there for you in your world and what has helped you to cope in the past? As someone who has dealt with ca three times and other difficult conditions, I know I have to really stay focused on my specific coping skills and access support, otherwise I will start drifting or floundering when faced with another health crisis.

I hope you are feeling better and that you have heard from your onc. I will check back here soon and in the meantime continue to hold hope for you. Brenda

shadow2356

Everyone is different, but my worst days are 4 - 5 days after the chemo. I am doing TCH. It started to turn around after that and I was really feeling much better 7-10 days after. I use biotene toothpaste and mouthwash for the mouth side effects. It also helped to use baking soda and warm water rinses. I also had a lot of joint pain which was made worse by the neulasta. I switched to neupagen and that helped. I also took tylenol before chemo and after. That also helped.

I have to do chemo because I had a grade 3 tumor.  My first was the worst. It got better after because we figured out how to manage side effects. Good luck to you.

Anonymous

Ladies, thanks so much for the support and wisdom! I am posting a lot on the "old fossils page." I wanted to let you all know that I met with (or should I say) my ONC team called me for a meeting yesterday. For the very first time, THEY ADMITTED THEY MIGHT HAVE MADE A MISTAKE IN MY CHEMO TREATMENT. YUP, COME TO FIND OUT THEY 'ACCIDENTIALLY' DOSED ME AT 4 TIMES (THAT'S FOUR TIMES) A REGULAR DOSE ON MY FIRST CHEMO. So, I have been sick as a rat for weeks and they are just copping to this now????!!!! OMG, I am beside myself with rage and talking to a lawyer. I just don't have the words SV

lovemyfamilysomuch

SV,  WTF????  That is so awful!  I hope you feel better soon, thinking of you! xo

Brendatrue

SV--My heart goes out to you. Did your onc team at least apologize? Are you still horribly sick, and if so, were you given any recommendations about what to do to help your body heal? I can't even imagine what would be the next step in your treatment. I am so sorry that this has happened to you, and I hope you will find a team that you can trust with your future care.

Anonymous

Hey Brenda, thank you so much for the comforting words. NO,my onc seems to have washed his hands of me. No apology, only, "since you are so symptomatic, we are stopping chemo" until we meet on March 11. Then he thinks, we are supposed to decide what to do next! Like I know? Again thanks, SV

cookiegal

what an awful nightmare.....I am so sorry

cancersuks

Stillvertical,

 How are you doing?  You've gone through so much!  I admire you so

much...and having been to Mt. Everest...I believe you said your picture is from camp#2?

I was watching a documentary the other week, and some of the climbers on reaching

the peak, when asked how they did it, one replied, "I never looked past my feet". That

basically has been my motto with my cancer mets. diagnosis. I hope you are feeling better!

Anonymous

I truly think my ONC is devestated as eh is used to being perfect. All I am hearing, even today, is that "we have never had anyone with such severe reactions as you after first chemo." I am like bullshit as I am reading about them (symptoms i am having) in the books I ordered (for free) from the American Cancer Society. They are really helpful books and again free and they arrived imediately!! They are helping my Dad a lot (and me). I have a second opinion this week by a BS specialist coming from UNC Chapel Hill for a second opinion and to review my case. I am trying not to hold out hope as I have truly been so devestated by chemo. i cannot take another disappointment-or an 'you are different'; can't help you bec you didn't react like anyone else, etc. Just so very tired, physically weak  and emotionally drained. Thanks for the support, Blessings SV 

Brendatrue

SV--I hope your body/mind/spirit will heal with no additional complications. Is it possible for the UNC-CH specialist to present your case to a "tumor board" at the university medical center? When I experienced some controversy about my last treatment regimen, I went to one of the regional comprehensive cancer centers for a third opinion, and my "case" was presented to the board there. I have a somewhat interesting (to clinicians) cancer history and a history of weird reactions to meds/supplements, and I know how challenging that can be in considering care options. Good luck with the consult, and I hope you will soon know how best to proceed with your care.

Anonymous

Dear Brenda, yes, that is exactly what they are going to do. And I have my fingers crossed! I am so happy as UNC Chapel Hill is beginning new BC program on the Outer Banks. Apparently I am one of the first patients and I feel so lucky. WE so need something like this here. looking for major serenity at this point. Blessings, SV

Brendatrue

SV, I am glad that you are feeling optimistic about being a part of the new BC program and getting some answers that may help to guide your future care. What a relief! I hope you will find serenity in the process of making decisions and taking good care of yourself. I will check again soon to find out what you have learned. In the meantime, I will stay hopeful for you!

Anonymous

Hey Brenda, OMG, I met with the Chapel Hill ONC-but things went downhill fast. He took my blood pressure first off and it was 70/50. He damned near died. He asked me to stand and my BP hit 183/110. That sent him into the ozone-so he sent me to the ER to get 'bagged' with more IV fluids and wanted to admitme to hospital. i said no, that this IS my life and this happens all of the time and I want to consult with him and we wil do that regardless of my physical condition right now-so we did. He was wonderful! News, not so great and I have many decisions to make. Just relying on God right now as i do not have any clue!! HAPPY VALENTINES DAY, MY DEAR! ))) SV

Anonymous

LADIES, I want to update everyone on my 'first chemo.' The thinking was that I had been overdosed x4 according to the ONC. After meeting with Chapel Hill ONC, finally got strait answers. He felt the dose appropriate to my weight and height and felt there was no "accidental overdose of CT combo." BUT, being the special gal I am, he says he has only seen abut 3-4 women who reacted to Taxotere the way that i did. He felt it was a delayed allergic reaction and that I simply cannot tolerate taxotere. He offered other options for chemo (that my old ONC did not offer). His issue was in my old-ONC failing to respond to get me in hospital immediately once things went south and to truly care for me-like day to day on the front burner. As I wrote in the above post, I was so ill on Friday when I met him I had no idea-the fact that I was able to get dressed to the nine's was my barameter, but no, my body was doing other things (and I am now four weeks out of 1st chemo) that he wanted to hospitalize me immediately. i chose not to do that, promising that I would drink at least two gallons of Gatorade every day and if ill, get to ER immediately! He left instructions at the ER for my care (thank God) So, now I have a new ONC as of Friday-yipee and new treatment team. Fingers crossed that this will work and that I have a team who actually does give a crap about me. ((((HEARTS)))) SV  

elimar86861

Have followed your story for a while.  I don't comment too much as far as chemo treatment because I did not have to go through it.  It's a shame that your first doctor was so useless and unable to deal with the challenge when you had individual issues and did not fit the cookie cutter mold.  There are better doctors out there and thank goodness you found one!

I'm looking at your diagnosis and I'm not understanding why you needed the chemo?  Are you are very young age or did you have a surprisingly high Oncotype score?  Just curious.

Anonymous

Hey EL, actually both. And the big issue for me is that in 20 years of trying, I have never been able to get off of Prempro (makes Tamox useless for me). Chemo was adjunctive thereapy until we try to slowly wien me off again over the next three months. We tried before surgery but i ended up in the hospital-just so ill from no HRT. ERRGH! Prayers needed. SV

Brendatrue

SV, I'm glad to hear that you feel positive about your new onc and care team. I know from personal experience that having trust and confidence in those who are providing info, options and guidance is critical in the process of coping with a breast cancer diagnosis. One of the things I want in my care team is an acknowledgement of the person that I am, not just my cancer history, and respect for my right to be well-informed and very involved in the decision-making process. It sounds as if you have some decisions to make, and I hope you will feel more physically well so that your thinking and choosing will be grounded and ultimately lead you to the care choices that are right for you. I will continue to check in with you from time to time. Take good care!