Chemotherapy for Stage IV
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TxKaren, For sure I am hoping and praying with you that the lesion is benign. Treso, I have not been ignoring your question, just have not been on here. I am actually still on vacation, but Chrissy B and I are at a Subway now using their internet service.....the house we stayed at which used to be my Uncle's home is so deep in the woods we cant pick up on wireless there even though the neighbor gave us her info to use hers. Ok, re the nails.....Only one fingernail actually came off....I think my index finger on my right hand.....two of my toenails fell off on their own and the poditrist took off the nails on my big toes and one other toenail. They actually felt better after they were off. I am not exactly sure when this happened in the course of treatment, but am quite certain I was at least halfway through so I would guess it was after at least three months ....also keep in mind I was doing abraxane weekly so if you are doing it less frequently it may not happen the same with you. I have learned that no two women react the same way to treatment and seldom do we have the same SEs. Maybe you won't even lose your nails.
I was told by someone I know who had the problem with her nails lifting that by having pink & whites done (it is not exactly the same as having fake acrylic nails) it held her nails down and she did not lose them. Not every nail salon does it so you may have to ask around.
My nails were super hard forever after the abraxane....to the point where it was difficult to trim them. Now that they bad part is almost grown out....Can you believe it?!!? over two years since I went off it.....they are splitting and I can just tear the tips off. The last doc I showed them to said my nail growth is stunted on my thumb nails....the others are looking quite normal.
Next week I will be back home and we are going to be scheduling scans and on Tues I am having my lst CA27/29 since going on Xeloda and herceptin......I am feeling fine, but have found that is not always a good indicator for me.
Marybe Be you own advocate and keep on your toes. I went from no stage (1990) to Stage lV while under an onco's supervision.
Diagnosis: 4/1998, IDC, Stage IV, 0/19 nodes, mets, ER+/PR+0 -
TexasKaren: I hope you can feel the positive energy and prayer I'm sending your way...
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Marybe: I didn't think you were ignoring me! I know, sometimes, I am off the site for days. I hope you're enjoying your vacation. Every fingernail is now in some sort of rough shape from the Taxotere which I've been on since 5/5/11 (2 weeks on, 1 off until now which is 2 on, 2 off until 11/15/11 when I will stop this regiment). One index finger is really lifting but, as the nails lift from the fingertip end of the nailbed, I have clipped them very short as you suggested. A few are in the very painful stage and I could see where not having them would feel better. Thanks for sharing your experience. Enjoy those woods!
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Marybe: I didn't think you were ignoring me! I know, sometimes, I am off the site for days. I hope you're enjoying your vacation. Every fingernail is now in some sort of rough shape from the Taxotere which I've been on since 5/5/11 (2 weeks on, 1 off until now which is 2 on, 2 off until 11/15/11 when I will stop this regiment). One index finger is really lifting but, as the nails lift from the fingertip end of the nailbed, I have clipped them very short as you suggested. A few are in the very painful stage and I could see where not having them would feel better. Thanks for sharing your experience. Enjoy those woods!
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Marybe: I didn't think you were ignoring me! I know, sometimes, I am off the site for days. I hope you're enjoying your vacation. Every fingernail is now in some sort of rough shape from the Taxotere which I've been on since 5/5/11 (2 weeks on, 1 off until now which is 2 on, 2 off until 11/15/11 when I will stop this regiment). One index finger is really lifting but, as the nails lift from the fingertip end of the nailbed, I have clipped them very short as you suggested. A few are in the very painful stage and I could see where not having them would feel better. Thanks for sharing your experience. Enjoy those woods!
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TexasKaren - Sending all my good thoughts your way - SUE
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Thanks all... ! I appreciate the good vibes.... I'm still believing the reports are benign.
Marybe: Glad you are having a great time! I'd love to be somewhere cool and green like you are!
Re: fingernails: I constantly wear "Kiss" fake french nails...I do them myself weekly. Have not had any fingernail issues on Abraxane; maybe they help? I was on Taxotere for 12 cycles with my first dx in 2007 and didn't have any issues either. Don't know, but again, we are all different. I am getting some neuropathy in my left hand (fingers), but not my right (??) S/E's are so strange for each of us!! Still don't know where that occasional day of awful (8 on a pain scale) body pain comes from; I'm tracking to see if it's related to the Xgeva, the chemo, or is just "me".
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Praying for you TexasKaren! You have supernails, indeed!
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Putting up prayers for you TexasKaren. I had a colonoscopy in April/early May and showed nothing - last year, they removed 3 polops - one they marked the location with a tatoo, it was large and they were concerned but all turned out benign - I am sure yours will as well! The body pain is an odd one - I don't have a handle on that one yet. I makes so sense and does not seem to relate to anything in particular.
Hang in there Treso. It could be that we do get the chemo less frequently - its once every 3 weeks for me.
Marybe - the best to you always...you seem to have some uplifting to say all the time - thank you for that!
I will be starting the nails here next week - each thing has it day, it seems. My fingers are starting to get numb - more the right than the left and I have nails but they do keep breaking but still growing - clear polish has done ok so far but the Kiss nails are in order.
Hugs all
Low
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Low, Who knows maybe you won't get the funky nails....everyone is different. Mine did not split at all on abraxane/avastin...just started turning color and it looked like there was a fungus growing underneath them when the raised up enough for me to look under there...and then they were loose, but the nails themself were hard as a rock. Now suddenly my nails are splitting and cracking and I don't know if that is due to Xeloda or what. One thing I have found and it sounds strange I know..perhaps a little warped even.....but even though some of this crap we have to go through is awful, I at the same time find it rather fascinating. I look at the wrinkled skin on my arms which I swear seems to get worse every day and even though I am not a spring chicken (that's what it looks like to me, chicken skin) this happened fast and it is not normal aging and I think Wow, look at this. This is actually my arm and it looks like my grandmother's did when she was 90. And my hair....the new stuff is growing in black! And when I was doing avastin, Oh, the stuff that came out of my nose. I would blow out things that were actual chunks. looked like cement or something and as gross as this sounds, I really wanted to run show it to someone and say Look at this! This came out of my nose. But I restrained myself since only someone else on avastin could relate to it and not be totally grossed out.
I guess all we can do is hope that the side effects are worth it....and they are IF the treatment is working. I have not had SEs really other than being constipated with the last four treatments and none of them worked....now with the Xeloda I am using bag balm and wearing gloves and socks to bed to avoid the dreaded hand foot syndrome, but I am not sure if that is what is helping or if I just am not getting that SE.....my finger tips are slightly numb and they do feel rough on the ends, but it isn't any worse than what would happen if I did a lot of dishes. So instead of being happy about this, I am worried that maybe this one isn't working either. And so far as diarrhea which everyone else seems to have with the Xeloda, I don't have that either....Oh when I have to go, I have to get to a toilet right away and it isn't always the firmest stool in the world, but it's not what I would call diarrhea and to tell you the truth I am just really happy to not be constipated. Sorry, for my rather personal descriptions there, but here I feel I can talk about things like that.
So Tues will be the big day when we will do tumor markers.....my last CA 27.29 was 3,379, I think.....I sort of forget now. I have finished three cycles and since my change in status from HER2- to +, have had four herceptin treatments so it is time to see if anything is working. If my tumor markers are up to 4,000, I am not only going to be disappointed & discouraged, I am going to be pissed. And I am most likely going to start seeing that other onco I went to for another opinion.....he said to see if this one was working before making any changes. I know there is only so much my onco can do and there are only so many options so far as treatments go, but I also know this other guy did wonders for a woman I know who had much larger liver mets than I do. So we shall see.
Hope you get a good report, TxK.
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Marybe-I so hope the Herceptin is working for you.I will be anxious to see what your numbers are. Was the other onc you were thinking about seeing a local guy?
My tumor markers have never really changed from when i was full of cancer to almost none. We are going to do the CTC (circulating tumor cell) test instead this Tuesday. I saw a brief discussion of it on this thread and it didn't seem to be liked very much Also saw where some insurance companies would not pay for it. We wanted a way to track what's going on between scans and CA27.29 wasn't helping any. He is also going to do an alkaline phosphate test for bones. Willing to try whatever-this time between scans is waay too long.Ihave finished surgery and chemo and have not yet started Rads due to fluid build-up in my chest from the sx. Worried things are growing back already.
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Marybe: I have been on Xeloda since early May with great results. My first PET on 6/30 could not detect the lesion on my liver which made me very happy. I had relatively no s/e from it. Well, that's not completely true. I had some bizarre s/e (two hallucinations and "brain disconnect" which was interesting. That only happened a few times also. I was talking and using a completely wrong word (so far off from what I meant to say) but, my brain didn't detect it being wrong. I heard the word I was supposed to use. These s/e had my onc sending me for a CAT scan of my head immediately. It was normal (as normal as any of us can be, that is...). It hasn't happened since May so, I guess I'm used to the X. I had some headaches (not bad enough to even take anything for). I was constipated but that could have been from the pain meds. I did have hand/foot syndrome (painful) and my onc reduced my dosage and it got better. So far, Xeloda is my favorite (weird to have a favorite, huh?). Taxotere is the one giving me so many s/e. I, too, am facinated by the s/e I experience. Several of my nails are now bleeding (mixed with lymph fluid-I think it's lymph) and I will show anyone willing to look (which is most of my family and friends-they're facinated, too). Good luck on Tuesday with your markers.
Lilylady: I am one of the people that the CTC is actually a good indicator. The other markers seem to correlate with what my cancer is doing also (CA15.3 and CEA). My insurance will only pay for the CTC once every month, which is fine. Good luck on Tuesday with your CTC.
Lowrider: I hope you are feeling better these days. I didn't even attempt clear polish or fake nails since the nails are lifting right up from the nail beds. I did, however, try crazy gluing two of my nails to the nail beds. I don't recommend this (for, oh, so many reasons, haha - I've glued my eye shut by acident and, yet, I still use the stuff) because I realized that there was stuff under my nails seeping out and, if I kept them glued, they would get infected for sure. Unfortunately, several of my nails are now bleeding a bit under the nails and hurt like hell. This, too, shall pass.
Hugs to all, Treso
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Treso; I had that deal with the speech once....was at work calling patients and I don't know what this poor lady on the other end of the line thought because I was making no sense....I told my boss and he had me touching my nose and doing all this stuff to see if I had experienced a stroke or something. We called my onco and he immediately sent me to the hospital and they determined it was a TIA. It happened once after that when I was at the pharmacy and I could not tell the pharmacist what I wanted.....I sat down and waited since I knew what was going on this time and it went away. It was the same as you....I knew the words I wanted to say, but could not get them out...something totally different would come out of my mouth, but I could see the correct word in my mind.
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No word yet on the colonoscopy results... supposed to be out in a week. If I don't hear today, I'll call tomorrow.
I remember when "Chemo" meant that you were sicker than a dog for days on end, living over the toilet, vomiting, diarrhea, etc. Seems nowdays that they have that part fixed for the most part, and the "side effects" of these drugs are a strange and diverse lot! I have had no nail issues on any of my chemos (Navelbine, Gemzar, Xeloda, and now Avastin/Abraxane); I have what my granddaughter calls "booger nose" (yes, Mary, I can blow a booger the size of Cleveland out of my sinuses!), and no matter what I'm on, constant constipation. I have weird and miscellaneous days of extreme body aches, and blurry vision, and some neuropathy in one eyelid (doc can't figure that either, he even did an mri for TIA or something), and neuropathy in my fingertips. I'm losing my eyelashes, but not brows or hair. We are as individualized on our S/E's as we are as people.... !! It is a fascinating journey, to say the least !! We should do a survey to see what S/E's everyone has had on what drugs.... LOL
Marybe: Hoping for good markers... just because you aren't having S/E's, doesn't mean it's not working !! Treso, so glad it's working for you!
I'll get my 6 month scans mid-October to see if Av/Ab is working... BUT, my lymph glands are still down, and the skin mets are drying up and cracking... sure sign they are dying!! (My boob itches like crazy all the time, another sign of "healing".!)
OCTOBER is OUR MONTH! Hugs to all my BC sisters everywhere!!
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Karen, That would be interesting, posting what side effects we had with what treatments, but I am sure I have forgotten most of them.....know I had constipation with navelbine, gemzar and halaven, think I had muscle aches with the AIs, but know at the time I thought I had arthritis, and then with Abraxane I had everything, but even with it I forget some of them....and of course the congestion with the avastin. I definitely agree with you the SEs are as individualized as the response to the treatments.
After my appt with the onco tomorrow AM for herceptin, xgeva and blood drawn for a CA 27/29, I am having and echo done in the afternoon. Have any of you developed any heart problems with the Xeloda? This is my week off of it, but I suppose if my tumor markers have continued to go up, we may discontinue it.
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Marybe - I know it is routine to keep track of the function of the heart while on xeloda (MUG tests and echos) but only because it causes the very, very rare problem (so says my doc). Best of luck on your markers testing. Sue
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Guess what!! Guess what!!! My PET CT SCAN came back clear!!!!
GEM/CARB/PARP combination seemed to work for me!!!
I had my PET CT SCAN on Monday morning at 8am and they gave me my results on Monday afternoon at 3:30pm. That was the quickest turnaround ever!!! I still do not think it has sunk in!! My doctor and I are playing phone message tag, so I have not really talked to him. I do have a copy of my report/results and I have never seen a report like this since I was diagnosed with cancer. The report usually has the size/number of each cancerous tumor or area that showed on the PET CT Scan !! This report did not have any numbers indicating the size of tumors etc. because there were none!! I continue to count my blessings!!!
The final impression on the report said: NO METABOLIC ABNORMALITY TO SUGGEST LOCAL RECURRENCE OR DISTANT METASTATIC DISEASE!!!!!!
GOD IS GOOD and I am BLESSED with Friends and Family that care and love me!!
I have an appt with my oncologist next Friday to determine the next steps!! I think, I hope, I pray that I am done with this mess they call cancer!!!.
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Fabulous news. What a great report to read-one that says nothng bad.
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Dellmonica, You are blessed and that is truly wonderful news.....so happy for you. It is always uplifting to read good news. Thanks for sharing it. Marybe
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dellmonica: FANTASTIC news! Congrats to you. I hope you are done with this mess!
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Marybe/Sueopp: I have not had any tests for my heart nor has my onc made reference to any. Hmmm. Perhaps I will ask him about it during my next visit.
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Hi, I'm new on this part of the board. Not sure if I should be here or even posting. Forgive me if I shoudn't. I am waiting on results for my pet scan. Should be getting them tomorrow. I had a cat scan done last week and the results were inconclusive. My onc sees red flags but won't committ to anything until the new results come through. In the past few months I have fractured 3 ribs on each said of rib cage, 2 months a part.
I was dx stage 2 type 1 and have had the surgery, rads, tamox and now it looks like non of that worked. I'm not quite sure what to expect now. I have read the materials but I feel a liitle nervous as I do not understnad my chances, chemo, if any, rads, if any or nothing at all. Feeling lost and lonely even though I am surrounded by friends.
ANy advise.
Jules
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Dellmonica - Happy Day! Congratulations and joy to you (from another Maryland girl). Sue
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My dear Jules - it's not unusual to feel lost and lonely in your circumstances, but you have friends and sisters here at this site. My only advice would be to try to not "borrow trouble" - you don't know yet what the issues are and until you do, perhaps try to concentrate on the best outcome? Maybe try to take things a step at a time (not easy, I know). Best of luck tomorrow - Sue
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Dellmon: YEA!!!! We all celebrate your wonderful news!!!
I had a rapid heart beat (pulse, not high blood pressure) on Navelbine,but not Xeloda. I am having it again with the Abraxane. 2-3 times a day, my pulse just goes wild..up to 135-140. I use bio-feedback and meditation to bring it back down, but we're watching it. No arrythmias (sp!) or weird heart beats, just fast pulse. (Makes me feel like I climbed a mountain at 8,000 feet...)
I know that a lot of these chemos are very hard on our hearts... another lovely S/E of these poisons.
Swansagirl: Hope you don't need us, but we are all here for you... keep us posted, and you are in my prayers!
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Swanseagirl: Waiting is the worst! Whatever the outcome, please let us know and to reiterate TexasKaren's post, we're here for you. It's not a place anyone wants to be but, the women on this board are awesome. You are in my thoughts and prayers.
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TexasKaren: Any word on your colonoscopy results?
Marybe & Lilylady: Any word on your markers?
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I called yesterday and they said they didn't have the results yet.....I go back today to have my INR checked again to see if it's back in normal range and will hopefully find out something then. Had a stabbing pain this AM that is still there, but dull now on my right side, under my ribs. Since this is liver territory it sort of has me worried and I am thinking Why now?....have never really had pain before.
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My tumor markers are 4,181.9....not good. I need to sleep on this for a day....right now it seems like the end of the world, but I am always OK once I get used to an idea. they are scheduling scans right away.
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Marybe I hope your markers are up this time due to a flare and you show regression in your scans.
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