Starting Chemo in Nov. 2011...anyone else?
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Lory- Im so sorry you feel lousy..as if its not bad enough to feel like crap from chemo..we get to feel like crap from the things we take to hopefully help us feel better! Thinking of you.
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Thanks Kelley, I have been so doped on benadrly and slathered in cortizone.. oh and dunked in aveeno bath. If I could have slept in the tub I would have! Doc told me to take zyrtec, so that was added. Now if I can get over the cough I would feel somewhat normal. Moral of the story-this girl is NOT taking glutamine again.
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Andi- going on 12 hours alone and............I am doing just fine. I have not even had an emotional meltdown; perhaps that is because there is no one here to witness my woes! I signed up for a 2 hour mindful meditation class tomorrow morning. I have never been successful at meditating but I am told that this method was developed by an MD for people with chronic illnesses & it is OK to acknowledge the thoughts that race through your mind, unlike other methods in which a wandering mind is taboo. I m taking the class at a cancer support center, so I am hoping to make some new aquantances.
Sleep tight & sweet dreams to all.
Rose
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GrandmaV - I was hoping that your symptoms would have started to subside some by now, but it sounds like they aren't really chainging much. I am so sorry that they are continuing. I truly did only mean (by my previous long post) to let you know how concerned I was for you and that this road to wellness for all of us is not a short one without lumjps. I just wanted you to be as informed as possible about the tinnitis before you had to make such a difficult decision. And you are absolutely right that I can't know the pain and discomfort of the illness since I have never had it myself. I can see how your quality of life is being altered by this and know that you don't deserve to have all this to deatl with. I have grown to think of you as one of the "go to" people on this board as you have given so much good advice to others over the time this one started, and I greatly appreciate and respect you for that. I wish you the same peace that you have give me and others on here.
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I was just ready the posts from the last few days. GrandmaV, I hope your tinnitus is back down toa "manageable" level. I have had tinnititus since my surgery but it is not at the level that you describe. I do put needles in me and that helps.
I think the most amazing thing is how differently we all respond to our chemo, both physically and emotionally. And each response is "right" there are no wrongs here. IT is just what it is and it is friggin cancer!! I applaud you all for being courageous to address what comes up as it does and not take this thing lying down!!! You gals do not give up-- you will try this or that-- even l-glut when it gives you a rash for 5 days!!! and "HATS OFF" to those of us crazy and courageous enough to walk around...comfortable!!! (me too... I rarely wear anything except at work or palces wehre I'd wear a hat anyway). And to those strong enough to exercise -- and do!
And I am so glad to hear the love and support in the "voices" of each of you-- thank you all.
Q
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I'm having a better day today. Tinnitus is a lot less. I've had to give up caffeine, salt and I've been having the white noise on 24/7. I even use it in the car. I asked my husband if it was driving him nuts and he said it doesn't bother him. Thank you everyone for your encouragement. I do appreciate it and feel that you all do care. I'll let you know what goes on at my onc visit tomorrow.
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Grandma V, so glad to hear today is a better day.
I cannot imagine what you're going through. I hope and pray they are able to find some relief for you soon.
I have had a ridiculous amount of energy this weekend! of course, "energy" just means that I feel half way "normal" again. I'm enjoying this feeling while it lasts, but making sure not to over do it. I know how quickly I can fatigue these days. I'm interested in seeing if DD Taxol w/ Herceptin fatigues me as much as the AC combo has. I'll be starting this Thursday.
Hope each of you have had a good weekend, and a great week to come!
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Please tell me if any of you on DD Taxol felt EXTREMELY emotional, almost unstable seveeral days after treatment. This has been a very difficult weekend. Other than the achy knees, physically I have been ok. Mentally I am a basket case..I keep alternating between this sense of hopelessness to the feeling of ..ok I can do this and its like a wild roller coaster happening every few minutes or so. I felt completely frightened by my emotional state this morning..I dont know if this is the taxol raging through my system or its effects on my hormones but holy cow I feel like a mental case. I plan to call the onc tomorrow but I dont know if there is anything that can be done..aside from prescribing more meds that is..
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kelley, I had a similar experience after my 3rd tx of Taxotere/carbo, but I think it was the steroids. They gave me a large dose that tx and really messed me up. The third day after tx I was in a dark place. I felt like I was insane. That was when the Tinnitus got bad. I hope I never have that feeling again. I did start taking ativan and it has helped a lot, and lets me get some sleep.
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Kelley- I had that when I took the steroids with Taxol but that stopped when I stopped the dex. What I do see now is that I can be a bit more sensitive to things-- not in a good way sensitive but I can get hurt a bit easier. Since I know that, I just call myself on it and it goes away. I don't know if that helps you but....
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Good Morning Everyone,
It has been awhile since I have been on here but I want to first say to Grandma V that I hope your issues can be resolved and you continue on with your treatment. Even though this is a great support system on this site and we all understand what all of us are going through, it is still such an individual journey and we all have to make our own decisions about how to handle it all. Yet it sure does help to know we are not alone and that others care. I find when I start to get anxious and depressed, I come here to this site. I have a very loving family and great friends but most of them cannot fully understand the emotional roller coaster this is (fortunately - I am glad none of them know firsthand).
If all goes according to plans as of today (see I cannot even think too far ahead), I have two more chemo treatments. Next week, a week from today on the 16th, I have my 6 month followup mammogram then the next day Chemo #5. I don't need to tell any of you how the anxiety will build this week. Amazing it has already been 6 months. I have some anti-anxiety pills and you can bet I will pop a few before that mammo.
I had a real bad day last week emotionally and I think it was because I dreamed that I had cancer and was bald. Unfortunately, when I awoke, I could not say "thank god that was a dream." That really spoiled my entire day and I could not shake it.
I do feel fortunate that I am having minimal side effects throughout this process though I do run a fever from about Day 3 to Day 5 or 6 after each treatment. Reading the posts here, I don't see many of you reporting that side effect and my doctor said it was not a "typical one" though she did not seem concerned about it because when I go in my temp is fine and my blood work is fine. I think it may be from the neulasta shot but who knows. It definitely is a pattern for me. I lay low those days, energy level is zapped but once it returns to normal, I can feel the energy re-entering my body and by Week 2, right now, I am feeling as normal as normal is these days. There is some cumulative fatigue and I feel a little spacey (chemo fog).
Keep the faith one and all - spring is closer than it was when we all began. A time of renewal and rebirth. Wishing you all hope and peace.
Allagashmaggie
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GrandmaV/ Quaatsi- thanks so much for your input..I truly feel as if I am losing my mind, although I have to admit today is a little better. Maybe it was a steroid crash or the change in chemistry from AC to taxol..I just pray this doesnt happen next time. I have 3 treatments left..and everyone keeps telling me "you only have 3 treatments left..no big deal" but dont they realize its still 3 treatments and each and every one of them sucks.
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Allagashmaggie- I also ran a low grade fever during the AC part of my tx and the onc said it was from the neulasta..I think neilasta is the most evil drug of all. Glad you are feeling well. Fingers crossed for that mammo.
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I am pretty happy so far with chemo #3. It was last Friday, and so far this has been the best Sunday and Monday I have had. I usually start feeling emotional and quiet on Sunday afternoon. Then by Monday, I am foggy, weak, and pretty much out of it. This time it seems to be better. My blood pressure is still high, and I am trying to manage some constipation, but so far it is better than the first 2 times were. The first time my WBC went to 1.2, and I had some really blurry vision and weakness,and I couldn't sleep for anything, and the second time, I had a 102 fever and passed out a few times. The fatigue was also much worse the second time, but fortunately, I did get a lot of sleep that time. I do have to go see the surgeon today because I think I may be having some lymphedema issues. The area had been completely painfree for a few weeks, and now it is red, hurts when I stretch my arm pretty far out or lay on that side, and there has been a little swelling coming and going for a long time. I never know if it is a problem or not, but I want to get whatever may be starting resolved if I can before I start radiation the end of February. I hope everyone is having a minimal side effect day and am still praying for those of you who are not. We are all getting closer to our goals. So many of you are halfway or more or at least finishing up one type of chemo and headed on to another type. It is a long journey, but we are getting there one step at a time. And every step is a milestone.
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Allagashmaggie - I agree with Kelli about the neulasta shot. It makes sense to me that if usually when you have an infection, your body jacks up its temperature in order to make more white cells to fight off the infection, then the neulasta shot ( whose job it is to make more white cells), should take your temperature up a little. I have also looked online and found that 26% of people taking the shot run low grade fevers. Mine was 99.4 -99.6 for a few days. My onc had said only to call if it got up to 100.4, so last time I did have to call them when it went on up to 102, but they decided I must have had some mystery virus. They did not attribute the higher temperature to the shot, just the lower grade one I had been running for several days. I hope this helps.
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Thanks for the info Bahamamom3 and Kellysgroi, my temp gets a little higher than that and it has even been as high as 101.2 but only for a short while and only if I do things like vacuum, mop or clean, it spikes. If I lay down it will come down to about 99.7 or so. When it subsides, it goes back down into my range of around 97.5. It does only make sense that the neulasta shot would do this. Afterall, it is made with e-coli!! Don't you love all this poison we get but I am looking at it all as my friend right now. If the temp was not the norm but something different, I would be more worried but this always happens Day #3 after treatment and Day #2 after the shot, just like clockwork. I have wondered too if maybe I had something like vaginal irritation or infection going on as I am quite often sensitive in that area but that is something they are not too concerned over right now. Once all this chemo is done with, I will need to schedule dental work, colonoscopy and lots of other fun stuff. They say I should do none of that until well after my last treatment.
Even though I had a complete hysterectomy 10 years ago (for benign reasons), my breast tumor was highly estrogen receptive so I have been paying more attention to things that have not been injected with hormones, like hormone free milk, eggs, etc. Kinda like closing the barn door once the horse gets out but hey.......better late than never I suppose.
Feeling good today and doing some baking now that I can taste it.
Have a good week,
Allagashmaggie
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Hi TexasRose...I understand...no worries.
Andi, bikram yoga is a pretty intense form of yoga...not for everyone. I started with a simple hatha yoga class at a local fitness center, then decided to give bikram a try based on a friend's suggestion. I worked up to it, I suppose, but bikram is beginner's yoga and I know lots of people who never took a yoga class in their life and now love this particular form.
It is hatha yoga--I don't know all of the different yogas--practiced in a 105 degree room with 65% humidity for 90 minutes. It is 26 poses, each done twice--a warm-up, standing series with balancing/stretching and then floor series. In standing series you hold the the poses first 60 sec,then 30 sec, not so long for floor series.
It's not for everyone mainly because so many are fearful of the heat and humidity. But the practice rooms are well-ventilated, and the instructors are all certfied by Bikram Choudry himself. It is the best way I know to keep myself in shape and build lean muscle. But again, not for everyone. I thought I would dislike the heat/humidty myself but I find it's very cleansing instead. And I have to focus so intensely on what our instrutor is saying (they lead you through it all step-by step, every time) that my mind gets a nice 90" break from all my internal noise and worry.
You might check out a few studio websites to see what they have to say.
Good luck all on our next chemos.
C
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I just got back from onco's appointment. I told him all about my bad reaction to the steroids and feeling like I nearly had a break down (I cried the whole time I was telling him), and tinnitus and he said he doesn't really know what has caused the tinnitus that carboplatin tinnitus is very rare and he can't give me a treatment without steroids and he doesn't want to give me anymore steroids, so he said we have to stop chemo. He's afraid that any chemo they do would only make my side effects worse and he doesn't want to do that. The risks out weigh the benefits at this point. I will continue to get herceptin, rads, and a hormone blocker.
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GrandmaV -how are you feeling about this decision? I hope you find peace and that this makes the noises stop.
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I'm Ok with it , but it's a little scary. He said I got a lot of chemo, (3tx) they were dense dose and I still will get a lot of treatment, just not chemo. But I know I couldn't live with the noises if they got worse.
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I hope it gets better..I am so depressed and hormonally a mess right now that I can totally relate to how you feel..I dont think I can handle another day, I'm ready to just quit and I know thats not an option
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kelley, I know how you feel. I haven't been myself since my last tx. I've never experienced depression like this in my life. My onco prescribed an anti-depressant but I haven't went to the pharmacy to pick it up. I'm reluctant to keep putting more drugs into my body, after all it's been through. I may go get it tomorrow. How many more treatments do you have to go? Maybe they can reduce the steroids or prescribe something for you. Have you called your Onco about this side effect?
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GrandmaV- this is a very dark place to be for sure. The onc finally called me back today and suggested an antidepressant. I know it will take a while to get into my system (along with all the other crap in there) but I am going to try it..I will do just about anything to get off this emotional roller coaster. The physical effects have been so easy this time but the mental more than makes up for it. I have 3 more DD taxol treatments..I go every other week so my next tx is Jan18..I am so ready to be done.
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Kelley, I hope your antidepressant works for you. The mental and emotional stuff is so much harder to deal with than the physical stuff.
Hugs to you
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grandmav, i know it's scary, but i think you're making a good decision to trust your onco. (have you ever thought about a second opinion?) you DID get 3 txs, so surely that counts for something and you started herceptin with the chemo, so that's also a plus. i think the herceptin is the most important part for those of us who are her2+. and then there's hormone treatment and the rads. is your tinnitus improviing? i hope it gets better and finally goes away. with or without chemo, it's called quality of life and i know it would be awful to continue suffering like that.0
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I felt so depressed and not myself after my 3rd A/C treatment. I told my husband that I didn't feel like I could do this anymore. I had my last A/C treatment on December 27th. I was in the hospital last week and I can say that I feel so good today. My husband called from work and said I sounded great, was I feeling better? I start my first Taxol treatment tomorrow. I was told that I would not have steroids and I really hope to NEVER go through that stuff again! They made me cry for days!
GrandmaV-I am so happy that your oncologist listened to you. Here's a hug for you! Take it easy and relax, you deserve a break.
Kelley--Do what you need to do. The crying and depression associated with the steroids is only temporary--at least it was for me. I hope it is for you and the others experiencing this SE.
As for me, I am anxious about the Taxol treatment tomorrow. I am afraid of the SEs. I may not be able to get a treatment if my counts are still low. When I was released from the hospital on Thursday, they were low. We'll see and I'll let you know what happens!
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YaYa, My tinnitus is better, it's not as loud, but still very annoying. Onco said it was encouraging that it's better, and it may go away, but really doesn't know. He was very concerned about making it worse and my depression/anxiety worse.
Beth, I was actually a little surprised that he seemed so concerned. He's usually all business and I really got to thinking that he really didn't care, but that may be because of my emotional state lately. But he was genuinely concerned and seemed worried about making me worse.
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I am sorry to hear how you are feeling Kelley and GrandmaV -- I wonder if the timing-- you know we are about 3 months into this and it is winter, may have something to do with that. There is a thread on exercise which is very uplifting and also, Beth-- there is a good thread on Taxol as well.
I try to get outside and do something physical every day but when I can't I notice a difference. I think, for me, I try to keep up as I did before I had my mastectomy (in terms of work) and I can't. I accept that. Maybe putting too much onto ourselves might be causing the depression?? Can't say for you but I do hope you know you have support here.
Q
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bethu77- Sending you loving thoughts and gentle hugs on your first taxol tx. Wishing you minimal SE's-
{{{HUGS}}}
Rose
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Hi to all,
Grandma and Kelly, I was being treated for depression even before my DX, but I do feel like it has gotten worse. I will not put anything additional into my system, jsut dealing with the additional funk so to speak. I can't imagine getting thru this without a anti depressant and a good therapist. The question for me is always can I ride out the "down" time or do I need some extra help. It is a fine line and a choice we al lhave to make. I was soooo resistant to anti depressants for so long and after I began, not sure why I waited. I am sure it had to do with feeling weak, not a place I go at all.
So now my question is is the funk a SE of treatments or the DX. Not sure and not sure if it even matters. Just in that funk place. Even good news doesn't do much for me. My preference is sleeping, again a cumulative se or avoidance or a combination. Two more weeks of taxol/herceptin, then about two months off for surgery and recovery before I begin AC and then radiation. Not sure I have the energy, physical or psychic to continue, but the options are limited. Does anyone else get tired of being the "model" cancer patient. I just wantto scream it *****. Cuz it does.
Thanks for letting me vent
Gentle evening
Nel
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