August 2010...anyone starting chemo besides me?!
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Conniewaylene: thanks for stopping by. You are truly a very lucky person to have gotten through this without sickness. You are posting on a thread, however, where we ALL have SEs! Noen of us are saying it is "hell" but we are unabashedly sharing the reality of the experience with each other every day. Glad you are doing well.
Omaz: it is so tough to answer this question but I am going to give it a shot. If I were you with no signs of node or invasive involvement, and I was doing rads after, I might forego the 6th tx. You are already in full-on chemo-pause, didn't have any signs of spread and the neuropathy is getting bad and you had it early, and you wil be taking herceptin post-chemo I would say it is a fair bet to stop at 5. It is so very, very hard to say, however. The neuropathy is scary but often times chemo is temporarily affecting nerves and when chemo goes away, nerves lose their disruptive host and go back to the original processes. I also know there is no guarantee. I would not stop at 4 because of being afraid of neuropathy. I would take a wait-and-see after 5. If the neuropathy is about the same after 5 I might even go for 6. I have to share with you my biggest fear, however, is being given the option to have less chemo, taking it and then having mets or a recurrence and having to go through chemo again. In your case, however, if you are done with #5 and the neuropathy goes away over the year after, at least going forward you would *know* neuropathy was temporary and if you had to go through chemo again (forbid but it is a possiblity for all of us) you would not be so scared of permanent neuropathy and be way more comfortable to complete your regimen. I am so ambivalent that perhaps I was not helpful but I hope this helps you
Sorry...it is a super tricky question and so hard to answer definitively.Calamtykel: I don't blame you on Neulasta. Just don't go back! Now there is surreptitious defiance!! My wbc's are always HIGH and I get neulasta every time. They are saying the wbcs are high because my body is fighting an infection. I don't know where this infection is but I am also on cipro for the 10 days following each tx. I am confused. Perhaps neulasta is doing a really great job and the chemo is not killing my wbcs as much as they thought and it is forcing my body to make too many wbcs but my math was discounted when I presented my case. I guess they know what is best but my body is producing a lot of wbcs in response to an infection (???) I do not know I have?! I don't have bone pain, however, so I just will continue to take it.
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Omaz - As you know, I am NOT a doctor. But, I guess if I were in your place, I might opt for the 4 treatments and then lay off. My reasoning would be that the herceptin and any estrogen-blocking drugs can also help to fght any recurrance. Many people get just TC (without the herceptin) x 4. Did you have a mastectomy or a lumpectomy? Are you planning on having rads? That is also another treatment. I just think that if the neurological side effects are that severe and getting worse with every treatment, I might not want to continue through the whole course of 6.
I feel fortunate that my neuropathy is slight to moderate and didn't start until treatment no. 3, and it doesn't seem to have worsened as long as I'm on the Neurontin.
How did your onc react to the idea of the decrease?
Thinking of you!!!
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Thanks so much Lisa and LIzzy, I appreciate your thoughts! My onc is so reasonable and seems very wise, I am grateful for that. He is willing to discuss things and take it one treatment at a time. It is so hard! I have this fear of waking up at night with some gross impairment. Fear fear fear, ugh.
Lizzy - my WBC are also high with the neulasta. One thing the onc nurse said at the very beginning is that you DON'T EVER want to get 'febrile neutropenia' which made HER cringe and look distressed and I took it as a sign the neulasta would prevent that.
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I have a friend who had neutropenic (sp?) fever several times during chemo and had to be hospitalized. She did have the neulasta shot, but her body rebelled in every way it seemed, to the chemo, and she still got sick. It was very scary. She had many different kinds of infections (mouth sores, etc.) You can die if your body can't fight the infection. But my thing is that your WBC counts bounce back fairly quickly in between - and at this point, our doctors should be able to see our track records. So far I haven't been "under" normal one time and even if you do, it's just a matter of days really. IT's not like neulasta lasts for months or something. That is why I think I will be leaving my last chemo and making "other" plans for the following day.
Making pies with my 8 year old and trying not to think about starting the ritual tomorrow night of decadron/benadry, et al...........
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Calamtykel - you sound like an awesome cook! My 14 year old daughter just picked up a coconut at Safeway and is spending the afternoon figuring out how to get to the cocnut milk!
I wonder about the neulasta too after the last treatment, so many choices here.
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Omaz, I have a machette from my work in Haiti. It is the tool used there to open coconuts. I think the preferred method in the states is to buy a can of coconut milk. Safest method.
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ConnieWaylene How lovely that you had "NO PROBLEMS." Wow what sort of chemo were you on? And your radiation regimen was also of no notice to you? Was your surgery also a non event. Perhaps the day you found the lump, or your doctor did, was also just another perfect day.
I have to ask what you are thinking posting on this thread? What is the intent, for us to feel like idiots or for someone newly diagnosed, who wouldn't be on this thread anyway, to feel awful becoause they do have pain, and heartbreak and other issues?
Maybe you are a TROLL, one of the lowest forms of life.
Ginger
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Hi all...Hope everyone is well...
Here is an update...
September 9 - Pelvic MRI
September 14 - Chemotherapy (hemoglobin 11.1)
September 16 - Flu shot, DNC Laparoscopy, to check for endometriosis (Negative)
October 5 - Chemotherapy and Zolodex shot
October 7 - FINALLY...uterine fibroid embolization... I went to the doctors about this issue when they found cancer...
October 26 - Chemotherapy
November 16 - Last Chemo
December 13- Bilateral Mastectomy/ Delayed Reconstruction
Radiation date to be determined... (Approx three weeks after aforementioned procedure)
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Hi Sohardbnme! Glad you got that fibroid taken care of - finally!0
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Omaz That is a tough question, whether or not to stop the TCH early. It sounds like you and your onc will take it one treatment at a time but your fears are totally understandable. It is so frustrating that this treatment that is supposed to help us be able to live long lives may also give us lifelong health problems! I am sending good thoughts your way that your neuropathy won't get any worse over the next few weeks so that you can finish treatment.
Lizzy About dreams - I have had one night of really wild vivid dreams each chemo cycle so far. I sort of think it is related to the steroids. My treatment day is Fridays and my first cycle the following Wednesday night I had the strange dreams. My second and third cycles I had a lower steroid dose than the first cycle and I had the strange dreams on the following Tuesday. The other nights have been normal for me regarding dreams.
Sohard Good to hear from you again! I'm glad you got your fibroids taken care of!
I did end up having a fever last night, my temp was normal when I first got home from work but a couple of hours later I was up to 99.7. I took some tylenol and had dinner and by the time I went to bed my temp was back down to normal and I felt much better. Today I'm feeling fine and I have taken my temp several times and it has been normal. So I'm not sure what was going on with my body last night but hopefully whatever it was has passed. The sore under my tongue is also much better today. I hope everyone else is having a nice Saturday!
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"I wanted a perfect ending. Now I have learned, the hard way, that some poems do not rhyme, and some stories do not have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious ambiguity." ~ Gilda Radner
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I will try to pay attention to my dreams this next week because I have to take a lot of steroids to start Taxol. I have had some dreams these past two months and I wonder if the timing is related. I'll let you all know.
Are crazy dreams a SE of steroids?
GInger
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Hey SoHard, glad to hear from you.
On WBCs: mine have been high each time too, but I get neulasta after each chemo. But even with good WBCs, I've been hospitalized twice with infection. Go figure. I no longer try to guess or plan with this stupid disease.
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Sohardbnme - I like the quote! It is hard not knowing.
Thanks JSW.
Ginger - we resorted to powertools to get the coconut open!
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Ginger: thanks for weighing in on our *visitor!* I guess I was not the only one who felt we were being told, in a strange way, that our collective experience is not the norm and perhaps we are scaring readers!!!!!!
Sohardbnme: WELCOME BACK WOMAN!!!!! Good to hear from you again. I am so glad you are doing ok, got that fibroid situation taken care of and shared with us the prolific words of Ms. Gilda Radner! Good stuff. So glad to hear from you again...I was worried for a while
JSW and Ginger: dreams have been so weird...I don't think I ever had a nightmare...ever. I did have one last week. I am not the kind of person who remembers my dreams and now they are like a movie I almost look forward to! I wake up and remember them as I am emerging from the dream state. I have crazy dreams now and I don't know if it is the steroids, chemo or just my mind is letting loose!!!! Who knows?!
Neosporin lip balm: HALLELUJAH! I just saw a commercial for it and I will be purchasing it and using it all winter. I have dry lips and started to get little sores on the corners of my mouth with the chemo nurse said could be the beginning of a mouth sore. I got chapstick lip balm (some new medicated kind) and just last week I started to think maybe I should be using neosporin and now they just start advertising a lip balm! YEAH! Perhaps I am clairvoyant!
JSW: I hope your temp stays down. I never thought a 100 temp would scare the *s* out of me like it does now!!! I hope you enjoy some football watching this weekend. I am lamenting the Yankees losing to Texas but their pitching has not been great this year. As for the sore under your tongue, that sounds wicked uncomfortable. I have resorted to using Listerine before I brush and using Biotene when I am done. I think that is a good 1-2 punch!
Omaz: yes, bring out the power tools! I hope she is enjoying her coconut milk now!
Ladyinbama: maybe my high wbcs mean that I am fighting an infection. I get neulasta the day after chemo also. Thanks for that info as now I feel I am definitely wrong and my nurses are right for keeping me on cipro as my body must be fighting an infection somewhere. Perhaps without cipro I, too, would be heading to the hospital which, safe to say, is on a long list of things neither of us want and you not again!
Headaches: here they are...a few days before chemo...they start about 7-10 days before the next chemo...ugh!
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that's a really strange post, now that I re-read it. Poster joined Oct22, posted here today and it was her one and only post. Very strange! Anyway, I do find it difficult to believe that someone had "NO" (emphasis hers not mine) problems on chemo at all. None ? Not one single leg ache - constipation -- nothing? At ALL? Very strange posting..........
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Calamtykel: I totally missed the fact that our *visitor* was brand new to the site. Very strange indeed.....0
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mystery visitor- What is the strangest of it all is for them to post here and here only!
I ditto GINGER!
Sohard i am glad to see you have some progress in your treatments! Post more often!!!
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Well ladies, thanks to my chemo brain, I left the keys in the car over night (I was cleaning the car out after coming home from somewhere) and totally forgot. Got the kids in the car for Sunday School today and it was totally dead! =:O DH had already gone out and by the time he got home it was too late to take them over. ACK!
So trying to figure out what to do now that he's home - all dressed up with nowhere to go. I guess I'll hit the drug store to make sure I have enough benadryl to begin the medication tonight........
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I think it is multi-tasking that has been hit hard with the chemo for me. I find some things that usually 'stick' in my short-term memory just slide out. Work will ask about something and I had completely forgotten it! I have started taking more notes, I just have to remember to read them often!! Kids are the ultimate multi-task challenge to me! .
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jsw- Eureka! I think my crazy a$$ dreams do align with my "roid" use! I will take more notice during round 3.
mouth probs- I would recommend L-Glutamine powder 3 teaspoons twice daily in liquid, swish and swallow. I (touch wood) haven't had any problems so far. I also use a toothpaste called Squigle, it has 36% xylitol. Good luck.
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apparently, multi tasking for me includes removing the keys from the ignition! =:O
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Cal - It gets kindof funny after a while its so pitiful. Have you made any bread lately? We were cleaning out a cubbord yesterday and I found my grandpa's old bread rising wooden bowl. I kept it because I always wanted to learn how to make yeast bread. I was thinking about it again.
I am just sitting here drenched in sweat from chemopause.
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Good morning chemosabes-
Calamtykel- I have had 2 lock-outs and left my keys twice in retail establishments. Pre-chemo it had been years since I did these types of things! Good times, girl!
Dreams: I made shrimp scampi the other night and so this dream made a little sense: I was sitting in a class and out of my bag comes what I thought was a scorpion but it turned into a shrimp! Next scene: I am selling a 1/2 used bottle of Dolce and Gabbana's Light Blue (fat chance I would ever sell this!) to a woman I worked with 12 years ago and she is willing to pay me almost full price?!??!?! I encourage her to pay me 1/2 retail and she insists on paying 3/4?! Next scene: I am LIVING with a guy I worked with for the past 3 years (he was fired about 8 months ago) and he grossed me out totally when we worked together! Now I am living with him and he is telling me the IRS stopped by looking for me!!!!! These dreams are bananas! I can't wait to see what I dream tomorrow night when I am high on steroids!
I hope you all have a nice day
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calamity- totally something i would do!!!
Oh actually when we took the kids to the aquarim the other day i forgot to put gas in the car and we totally died on the side of the highway, DH is mad at me cuz he had to push it a few miles to a gas station, then a little ways into a good samaritian stopped and towed us to a station LOL i forgot it happened!
Dreams- i will try to remember mine next time! i start the roids NEXT wed
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SoHard - Glad to hear from you! And really glad you got your fibroid issue dealt with.
I went with DH to Neil Young's Bridge School Benefit Concert last night, in the rain. But it was incredible. Peggy Young (Neil's wife) came out and introduced every single developmentally disabled student and alumni on stage. Then Neil came out and sang one of my favorite songs with her, along with some Native American dancers to bless the event. And he went over and sang to the kids. And I just wept with joy. It was so beautiful. Lucinda Williams, Kris Kristofferson, Elvis Costello with Emmylou Harris, Pearl Jam, Billy Idol and finally Buffalo Springfield (Neil Young, Graham Nash and Stephen Stills) who haven't played together in 43 years. Oh, and just after Billy Idol sang "Rebel Yell" - they came out and announced that the Giants at won the National League Pennant!!! It was cold and it rained, and I didn't mind a bit.
DH was happy and mentioned to me what a "long, strange trip it's been" since he went to work in Calgary and I was diagnosed. But, we are both convinced that after this year things will improve, and that we are much better and happier together than we ever could be apart. (Our 8th anniversary is coming up next month.)
All in all, just a wonderful, happy, romantic evening. And I'm so glad we went! Just wanted to share. :-)
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Lisa- Beautiful, in many ways.
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Lisa - Wow, Billy Idol, Pearl Jam - sounds great! Glad you had a nice time!0
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Omaz - I haven't baked bread recently - but last night I made a butternut squash pie (actually in a big rectangular 13" pan) with an oatmeal crust. My 8 year old and I experimented. I hate making pie crust so we made an oatmeal/honey/maple crust in the bottom that came out fabulous. I hope I can duplicate the recipe next time!
Cool that you have your grandfather's bread bowl - my mom has her great grandmother's wooden butter bowl that she brought west with her in a covered wagon when they settled in Iowa. It has a wooden paddle and once the butter was churned, it was put in the bowl and the milk pressed out of it.
Actually yesterday we did make butter - my 8 year old always wants to whenever she sees heavy cream in the store. It's super easy to make and she loves it (we use the hand mixer so it's done in just a few minutes.)I'm just not in a mood for anything right now - I feel like I'm in limbo waiting for tomorrow. Just don't feel like doing much of anything............thinking maybe we'll carve the pumpkin this afternoon.....
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calamtykel- great story and what a treasure. Reminds me of some of my favorite books from the past...
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