Calling all TNs
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Fighter - please don't feel bad for posting that you feel great, I know that even though I'm still in treatment, it is nice to hear that others are doing well. It makes me smile, and sometimes I just enjoy reading the lighter things, like what Heidi posts.
Kymn - you will have YEARS to get to NYC, I know it! Maybe we should all try another get together in the spring, do a weekend in NYC. Great retail therapy!
Stupidboob - I won't tell you to suck it up, I would say your MO is being an a@@! My doctor checked after my first week on Taxol for neuropathy, so it can happen that fast. I'm sorry the bone pain is hitting hard, that just sucks. I don't know what to tell you in regards to getting a change, it was just something my MO agreed to when we added Carboplatin. I would say keep pushing, and if you can, bring in someone to advocate with you - you aren't in the best physical condition, and it makes it harder to stand up and say no. My BFF came with me a couple of times, and was great for that. Also, keep harping on how this is affecting you, doctors often don't like hearing it and maybe he will agree just to stop the complaints
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As I understand it, testing for "true basal type" is not customarily done, more expensive, and does not really change one's course of treatment. It just adds to an already over stressed state of mind, IMO.
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Wow, I am gone for a few days and get so back up on messages! I will try to catch up on everyone, but for now will give a quick update.
I ended up in the hospital on Monday for low WBC and generally feeling like crap. I felt crappy on Sunday, but "normal a week after chemo" crappy and then on Monday, something happened during my drive from my place to the doctor's office (for a regularly scheduled oncology appointment). I knew I must look horrible when the IV nurse suggested leaving my port accessed "just in case" even though I wasn't having treatment that day. One look at me and my labs and the oncologist said I needed to go inpatient for a couple of days. I'm still here, but very hopeful that I will be going home in the morning. My counts are going up and I am feeling a lot better.
This messed up my plans for a Hawaii trip before surgery (I was supposed to leave tomorrow), but I'm okay with it. I'll just got later when I am better.
Surgery is still set for August 16th and the nurse that I see most of the time said that my numbers are coming up quickly enough that this shouldn't affect that.
So, hopefully I'll be home tomorrow and then just need to relax until the 16th. I am anxious about surgery, but SO ready to have this tumor gone. It just doesn't seem to be cooperating with anything and I just want it out!
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You got it Heidi!..Do we really need to know when the treatments will be same...Why freak out...we do that enough anyway!
I went to the PCP today..I just have felt like crap the last couple of days...I have a sinus infection..those things suck! Anyway, I'm on a Z pack and I can tell you I'm a very happy woman.
The doctor felt my neck for lymph nodes and thankfully they aren't doing anything...He said that feeling around he didn't feel anything that indicated cancer...
Ok..Let's go to God! I agree with with this sentiment exactly..I'm not a deeply religious person myself..but sometimes it certainly is nice to take the stress of our shoulders and put it on elsewhere.
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Hey guys, here's a link to some cute photos. My friend's son is a Master Chef and, though he didn't create these, the humor is apparent.
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Stupidboob - You are in charge of your healthcare and so you TELL your doctor what you want to do. You say, since I'm feeling _____ so badly, I want the dose lowered. Period. OR you can say what is bothering you and ask for an alternative or solution...they're not going to say, 'This is the only way'. You say it, look him straight in the eye and smile. Doctors 'recommend' treatments and its up to us to tell them what we want to do. If you can bring someone in with you for moral support, all the better, but don't be afraid. I cried every time I went to a doctor and I just apologized and went on with my conversation.
I was having horrible TE pain 24/7 for seven long weeks. I went to my ps and said "Take Them Out Now'. I said to my onc "Stop The Chemo, I"m Getting Them Out Now'. I didn't ask. I had surgery for the implants scheduled within 10 days and my onc and bs both ok'd the procedure and stopping chemo. I went on to have 2 more treatments, and then said that was it, I Was Done. Period. My onc smiled, and said ok. The chemo was literally poisoning me to death and I knew I had to stop. (9months later, I still have horrible SEs) Good luck and be strong!!
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blondelawyer: Sorry to hear about the low WBCs and your trip
But I'll be thinking of you on the 16th - take it easy until then, and stay away from anything/anyone with germs!stupidboob: okay, I will take the other side of the fence on this one. No one wants permanent neuropathy (and I think most oncs take action before it comes to that risk), but as TNs we get one kick at the can on this, and SEs can shift so much from one treatment to the next (my sister experienced terrible pain with her first taxotere, and the subsequent ones were better) that you just never know - it may be worth seeing it through one more treatment before fiddling with dose. Just my two cents - something to discuss with your onc, and of course only you know how you feel and what's really best for you. (((( hugs)))
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Stupidbood...do what you need to. Make sure you are heard, you can get them to listen....doesn't matter it is you who is suffering.
Laura Jane...we all know how tough this is and to have things go so fast. You seem to have figured out a pland makes sense and sending prayers to you all around.
Blondelawyer. so sorry you are not in Hawaii as yet......happened to me my first chemo with TC...down in the hospital but the WBC came back up...it was the horrible mouth ulcers that got me...now I am on diflucan for the next round and a mouth steroid and they reduced the chemo to 75% based on the SE's. If I do OK this round they will up it to 85% next time...
To all the newbies, I am new sicne June and this has been a tremendous support, more info and wise advice that you can imagine .
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Paintingmywaythru: Good luck with your next round. Luckily for me this was my last round of chemo before surgery (I may need more after surgery--talking to the the nurse on Monday gave me the impression that I will probably have to do more), so I just have to get better from this one. I feel so much better today.
I have mouth sores too--I'm using two different rinses that help some. Yuck.
Luah: thanks for the encouragement. I am keeping my chin up...this is just a little bump in the road.
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Suze- I'll be doing this trial in Indianapolis at the simon cancer research center, but I'm in NY often. It would be a blast to do lunch.
Mity- Thanks Ill check it out.
BAK I love that kind of tired too! It's so rewarding. Kind of like a nice glass of wine at the end of a long day. What do you do?
Kymn- Flights are inexpensive to NY through Delta. I stay at my BF's but I did discover Quickbooks.com last March and scored a great boutique hotel in Soho for a fabulous deal.
Stupid boob- I did the 12 week taxol and remember the first one was so painful but I started doing accupuncture right away and it really helped. I do remember the 48hr stay awake period each week though and I developed this unbelievable craving for chocolate. I would start salivating for it during the chemo. I would actually preplan and bake a chocolate cake the night before. My onc insisted on the lower dose to reduce the SE's. Speak up and insist. I also remember other women having a difficult time with it also. I only ended up doing about 6 or 7 I think before my surgery. I hope things go easier on you.
Fighter- I am actually celebrating stage 3B and don't really plan on moving over to stage 4. I guess if that time comes I'll go there. As far as "only helpful and encouraging" I keep my plastic smile and show only my positive side to some family, some friends and my clients. I love this thread because I feel like I can be open and honest and share good, happy, sad and inbetween times openly and honestly and I really appreciate the honesty of all of these woman. I hope that you can feel the same way. I offer my shoulder to you to cry on if needed and I look forward to making you smile if I can share a joke with you too!
Blonde- For me surgery was a breeze compared to chemo I hope it is for you too! I just wanted it OUT! also.
Titan- What a relief! So happy to hear your news. I hope your sinus infection heals quick.
The pain meds I've been taking at night have been giving me such vivid dreams. I dreamed all last night that I was making thousands of flat bread pizza's. Funny because I've never really liked pizza before. But first thing this morning I looked up the recipe and I will be trying my hand at making them for dinner tonight on the grill. There's a video on you tube showing how to grill them. I hope you all have a good day and for those of you on chemo I hope your SE's are few and or mild and you all find something that makes you happy today.
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blonde lawyer I showed my oncologist a steroid paste that I got form my periodontist if you have mouth ulcers...it works way better than all the rinses unless you jsut have thrush...it is triamcin/orabas 0.1% dent-padte 5mg. She saw the differnece it made and has writen me a new script with 5 refills. It is a tiny tube and you jsut pat a dot on the mouth ulcer...feels gritty but turns smooth once your saliva reaches it...seems much better at healing me even though I have the swishes, rinses, lidocaine, etc. My mouth is the hit place.
Good luck and I hope that you fare welll with surgery.
Laura Jane I embrace your celebration. It is worth celebrating and I send you love and peace.
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Stupidboob,
I had cytoxan, adriamycin and taxotere together - everyone says the "red devil" is the worst of the three but personally I believe taxotere and the red devil are on the same level. The taxotere caused muscle spasms for me; eye twitching, non cancer side pec muscle twitching, shoulder pain then my face went numb around my mouth (nothing severe, I could still feel and use muscles normally but when I touched it, it felt numb) and my left index finger went numb. It went numb during the second treatment regressed, then stayed stable the next two, and then worsened a bit during the last two and didn't go away. I stuck it out because I had read the studies that showed the increase in survival gained with the addition of taxane drugs to the chemo regimens. I was just too scared not to do it all.
My last round of chemo was June 13 or so, and my face is back to normal and I think, maybe, just maybe, my finger feels a little less numb. I also got very weak legs from the taxotere and some swelling. My oncologist told me Tuesday that usually the areas with neuropathy that are closest to the brain heal first - so he wasn't surprised my face had gotten better before my finger.
I had to change my profile to ER+.When they retested the residual tumor after my chemo, they found 5-10% intermediate staining for estrogen receptors. My onc put me on Arimidex day before yesterday. He believes the cancer mutated in response to chemo. I was so upset when I had 2 cm of tumor left and two positive nodes. I still don't know how much response I had as the cancer may be just scattered in the remaining tumor bed. I should get a better answer on that when a new pathology department looks at it later this month.
Blondelawyer,
I just had a uni MX three weeks ago. I was in the hospital two nights. The first week is a little rough- I took percocette every 4 hours the first few days I was home, then got down to breaking them in half and taking less. I am off all pain killers now.
I got the last drain out Tuesday. I had a post op infection last week that set me back a bit but I am feeling pretty good this week. The chest part doesn't hurt but I have numbness/sensitivity in the back of my arm. (I had 16 nodes taken out.) I also have tightness that runs from my shoulder to my hand when I raise my arm. I'm going to call the PT today to see if I can get in to get some specific exercises before I start radiation.
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Christina,
I'm on the same Chemo as you, TAC x 6 and you mentioned "The taxotere caused muscle spasms for me; eye twitching, non cancer side pec muscle twitching" I'm so glad you posted that. My left leg from calf to foot twitches uncontrollably at night, it keeps me awake and lately my eye are twitching like mad. I have also noticed my legs feeling a bit weaker than normal lately too. I go next Thursday for my 4th treatment. Will you be getting more chemo due to the 2 positive nodes or just onto radiation? Glad to hear your infection has cleared up.
I forgot to ask, did you get itchy? I don't have a rash or anything but I'm really starting to itch all over, assumed it was chemo related.
Take Care,
Heather
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Off to the beach today - yay!!!
Everyone, have a GREAT day
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oh suze enjoy it! hope the weather is great for you.
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Titan - things are good, been really busy with work and stuff. Getting back in the swing after the last surgery but its all good. How about you?
Notsobusty & Believe - Welcome, but sad to see you both here. The woman here are great and sooo helpful. I dont think I would have gotten through this without them.
Notsobusty - With regard to working. I worked through the whole thing. Took 1/2 of thursdays off when I had treatment and then friday (this was every other week for 4 treatments) then I had taxol weekly for 12 weeks and just took 1/2 days off on fridays for treatment. Some days were rough but I got through it. Kept my mind off of things. I also talked with my doctor about the anxiety and got xanex.
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Suze35: Have a wonderful day at the beach!
Laurajane: Grilled pizza sounds yummy. Sounds like a fun dream!
Titan: Hope you feel better. Seems there is a lot of stuff going around right now.
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mc- I got itchy...
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Suze- Have fun!!!!0
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Hello everyone! Sorry I haven't checked in. I have been on vacation the last few days and the first day of my vaca I slipped getting out of a paddleboat, took a nose dive into the dock, broke my nose and ended up for three of our 7 days of vacation getting 30 stitches across my nose area and then had to go back to have surgery and get my nose fixed. Had two black eyes, tons of swelling, a crooked nose and lots of bleeding and pain.
Laurajane: It's so funny. We were in Louisville, Kentucky visiting my inlaws and I was thinking of you, and in fact was about to send you a PM. I scrolled down because I wanted to see if you were even coming on the boards anymore and I saw the post of your local recurrence. F*** BC!!! You have always been such a loving, funny and generous presence here and I know that you have touched all of our hearts. Hearing this just broke my heart! Did you do the Xeloda? My friend who is further along and who has mets has had wonderful results with this treatment! Big,big hugs to you!
To all of you newbies, sorry you have to be here but you came to a wonderful place of supporting and caring women!
Titan: Glad to hear the dress worked out and crossing my fingers with your son's finger that they don't have to grow one, though I guess thank goodness they now have this technology.
Lovelyface: Prior to my diagnosis, I was stressed, depressed, exhausted and had given up on life--my hormones were completely out of whack. I am now on bioidenticals to try and balance them.
Sorry, I can't completely catch up on the PM's until tomorrow! Glad to be back and my appointments have been postponed for a couple of weeks so I don't know the results of the tests yet.
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Good Lord MBJ!! I hope you are feeling better! What a crappy way to spend vacation. Glad to have you back!
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LJ~((((((HUGS))))))
MBJ-Oh my. Glad you're okay
MC~muscle spasms, twitches and watery eyes. I would look like I am crying constantly.
Suze35~plz take me. over here working hard today.
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((((MBJ)))) and all the other ladies on the board having bad days, bad docs, SEs, etc.
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MBJ: Geesh, what a way to start a vacation - sorry to hear that. Just goes to show that even with all the BC crap, we can still get sidelined by regular illnesses and acccidents. Kind of a mixed blessing. When can we expect to see your new avatar, looking like a boxing champ?!
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MBJ: Sorry to hear about your accident. Not a fun thing to happen on vacation. Hope you are feeling better--I think everyone around here missed you.
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Titan: Forgot to say, hope you're feeling better soon with that sinus infection. And yes, yay for normal nodes!
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I did! You're a positive influence on these boards, MBJ!
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MBJ- feel better soon! That is no way to spend a vacation.
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Wow, having a hard time catching up.
MBJ - So, so sorry to hear that you broke your nose on vacation. Ouch!!! Hope you're feeling better by now.
LRM - I must have missed something along the way (way, way back) and apologize. I wanted to send my condolences on the lose of your daughter.
LJ - Well.........it looks like you have your treatment plan in place, sounds like a good one. I'm sure you know this, but when I started Xeloda earlier this year I was told to keep my hands and the bottoms of my feet very moisturized to help with the tenderness and blisters. I also wanted to mention that if you're getting the itches from pain meds try benadryl. RE: receipes - I really got into trying new stuff the last time I went through chemo and it seems I'm doing it again. Boredom, patience, time.......not sure, but it's really fun and I've learned a lot of new dishes.
Stupidboob- sorry to hear about all of the pain that you're in and having it minimized by the doctors makes it so much worse.
Hope I didn't miss anyone, if so - very sorry. Jenn
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Jenn3:
Thank you so much, Jenn, and please don't even give it another thought. With all you have on your plate you've certainly had your share of misery as well. We're doing ok - life goes on no matter what happens to us, I just miss her so terribly. A day doesn't go by that I don't cry to her and wonder how to bear this pain of losing her. It's a real bitch to deal with. I'm sure time helps, but the hole in one's heart never goes away. I hope all is going well for you and please know, I wish only the best for you.
MBJ - next time you go away - I think one of us needs to be your chaperone and caretaker! I am so very sorry you had to go through that - that's a fall that must hurt like heck. I wish you an uneventful recovery and hope you're painfree real soon. Please stay on land for awhile.....
Hello to all and am sending my very best to everyone - and to all the newbies - hang in there as best you can - this too shall pass. (God, I hated it when people said that to me- but it really is true).
Linda
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