Calling all TNs
Comments
-
Blondelawyer- I would ask the onc for a blood test to check your counts- if they are good- GO! Titan is absolutely right- it would do you good! Do you have an extra suitcase I could hide in and go with you??!!
0 -
Luah & Rella - thinking of you both. Hugs.
bkj - I'm not sure if I was the one who said that about Avastin, but I know it is generally the standard to have to wait 6 weeks after for surgery. I hear you on being nervous - I had my first Avastin yesterday, have a killer headache today that is probably from being sick, but I can't help worrying about it. At least with the chemo, you kind of know what to expect and how to feel.
blondlawyer - my MO practically put me in the car herself for a trip to NYC a week and a half after my chemo ended, lol. She just cautioned me to be careful in terms of hand washing, riding the subway, etc. I would say if your counts are good and you are feeling up to it, have fun!
0 -
Blondelawyer, I would check with my Onc if I were you. Have blood counts checked and then if all is good, Go to Hawaii. We went to Germany inbetween chemo #3 and 4. That trip had been planned before my dx. I was a little tired most days, but it was a lot of bus tour from city to city so I did get some extra rest on that part. Just go and HAVE FUN!!!0
-
Congrats to those of you who finished chemo!
Blondelawyer: I had my last chemo treatment on October 1, then surgery on October 25. I would definitely go to Hawaii. What island(s) were you thinking of? I love Kauai. I think a relaxing trip before surgery is a great idea.
Luah: I am sorry you have to worry. I hope you get it resolved and hear good news soon.
0 -
Well I'm back from my onc - and no definite answers yet. She didn't feel anything alarming (if anything, very small), but has scheduled me for a neck CT on the 27th. She's a sweetie, saying, "you had me worried, but now that I've examined you, I'm less concerned." Okay, I'll take that for now... and play the waiting game again. Thanks, ladies, for all your concern, means a lot.
0 -
Agree go, once you get your counts and enjoy for me!!!!
0 -
Wow, so much going on here lately I am having a hard time keeping up!
Luah: Have them check your thyroid, too. Mine went awol after chemo and now I need thyroid meds. Without them my neck swells up. Glad your dr. is confident it isn't anything serious.
Lovelyface: You must not give up! You must search for the light inside of you to guide you on your way and never, never give up. Life is prescious and you bring so much of yourself to the boards by your sharing. Big hugs and push for a scan to be sure. I have horrible neuropathy but I know I don't have mets and I am hoping the same for you.
Blondelawyer: I had surgery 4 week after chemo was completed. Go to Hawaii with your dr's blessing.
Suze: Wow, you sound like you were in Hog Heaven, lol! Sounds like a really great time. Xeloda is what worked for my friend-hope you havfe the same results!
0 -
ksmathews: Yay, today is your last day!!!!
Heidi: Thank you for the frog prince!!!
0 -
Thanks for the encouragement everyone! I am checking with my friend to see what his specific plans are and then will check with my oncologist if it will work out.
mccrimmion324: it is my understanding that pain is not common, but I've had pain from day 1. That's actually what caused me to notice the lump. I bumped the area and went "ouch" and felt and low and behold, there was a big mass. Originally I was told that the pain could be from the rapid growth of the tumor or just the location. I really don't know what is causing it. The pain is one of the main reasons that the oncologist wants another look at it I think. I'll be glad when Gertrude (the name of my nasty tumor) is GONE!
I hardly got any sleep last night, so I am tired today, but also on that steriod high, so being quite productive. I anticipate that I'll crash this afternoon. I have my brain MRI at 4:00 today and then the breast MRI tomorrow at noon. Will be glad to be done with those!
0 -
Luah - I am glad to hear your news is good so far, I am keeping my fingers crossed really hard, that you will get 100% clearance on the 27th. I am sorry for the waiting game, maybe during this waiting you will not feel even that small lump anymore.
blondlawyer - I wish I was as strong as you. I am having my breast MRI on Thursday and am already freaking out about how I will hear the results. I have to get someone to hear the results for me and then relay to me softly, as I feel I can get a heart attack. And you have two of them, the brain and the breast. I hope you have good support. If your counts are up, I don't see any problem with infection. I hope you can take this trip, it will be very healing.
MBJ - Well, I just heard from my Onc. office that Blueshield has approved the petscan. Whew!!!! So now I have a petscan and breast MRI coming up. My one year anniversary from diagnosis is on July 20.......keeping fingers crossed. Yes, I have to do something about keeping my inner light on, I just don't feel 100% well, so being at work full time is hard. This place of work also makes me sick, it is so cold and dry here, no warmth from anyone. It is as if we are all robots, walking around. I honestly want to do something else once I get clearance from all these tests, do something which makes me happy. I feel after this BC diagnosis, I cannot waste one moment of my precious life anywhere where I am not happy. Unfortunately, we have to pay those bills each month....... Oh! and I am meeting my 10 group of nice women, my support group tonight. We meet for dinner monthly. We first met at a "newly diagnosed" group meeting, we are all alive so far and doing well, except for a few concerns here and there, everyone so far is okay, thank God. Thanks everyone and have a great afternoon, evening, night.
0 -
Suze 35 - my best wishes on starting Avastin & Xeloda. I am sure this will wipe out anything which is lingering out there. Glad you are not doing the harsh lxempra at this time. I am praying that this time around, after you finish your 12 weeks of Avastic & Xeloda, that this will be the last time ever. Good idea to continue Avastin indefinitely. You seem to have a good onc.
0 -
Hi
Blondelawyer...hang in there..my gosh you had had a lot to deal with.
I had TC on Friday and have a raging case of thrush...my tongue and gums are black...just gross.. down to thin icy Greek yogurt with a canned peach blended in. Theswish rinse is not helping yet. Onc says wait 2 more days before she will try sometihng stronger.
And another complaint...I jsut have to put it out there..my skin, head, neck, joints, bones, fingers, heels, forehead, everywhere just aches...someof it is shooting pain. Onc said this would last 1-5 days. Started Sunday afternoon so I hope that I will start to feel better soon. Even the percoset doesn't really help it go away-just dulls it...and probably gives me a headache...enough of my complaints..hot here in Boston, MA 96...Going to read the screenplay "A Fish Called Wanda" to try and distract myself.
0 -
Lovelyface: Hang in there and I am glad the insurance approved the scans! Hugs!!
Painting: Ugh, sorry you are going through this. Good to distract yourself and hopefully you will get through this part quickly. Hugs!!
0 -
blondelawyer, I had to wait 6-8 weeks after chemo for surgery due to the Avastin messing up my blood clotting times. My Mom took me to France for 2 weeks near the end of that period. I just took normal precautions and did fine. Enjoy!
0 -
I'm sitting here borrowing trouble. My neuropathy is causing me severe discomfort.I drove my son to camp, 6 hours away, and that has stirred up my nerve pain. So I worry this will never go away, and that I will never be able to take any drugs that cause neuropathy again - like taxanes and platniums, if my treatment didn't work (tumor marker re-test the 21st.
I see the neurologist again the 28th. I HATE waiting! Thanks for letting me put my fears down here.0 -
Hey everyone! Sounds like everyone is going through some issues here...big hugs to you all..
Hey blondelawyer..think you have room on the plane for about 20 of us? I think we all need a break!
Luah..hoping you hear even more good news...being the curious type....what does your dr. think the swelling of the lymph nodes is? A late reaction to chemo/rads perhaps? Just being nosy...
0 -
Hey Riley.how's Lucy? I sincerely believe that pets help with our mental health..my cat is chewing on me whiile I'm typing this...If you don't have a pet in your house I recommend getting one...they are great for taking your mind off things..plus give so much comfort when you need it..they are just always there.
Heidi..really do like your baby BF... b-4 we moved we had a house with a pond and the bullfrogs would "sing" all night long...I miss that...they would put me to sleep.
0 -
Lucy's bouncing around the place like a bottle rocket again. That lysine paste really seems to have done the trick. Unfortunately, tonight, I'm the one coughing and getting a scratchy throat. I hate summer colds! Sipping lots of OJ while sitting in front of the fan (on top of the A/C running!)0
-
rella-how did it go? I hope you had good results!
suze35-did you have avastin only? Sorry you have a headache and hope you feel better soon! Why do we think avastin is so scary? How did you feel on the taxol/carbo? Sorry if I have asked before-I think I have chemo brain!
riley-what chemo did you do with avastin? my next round of chemos is abraxane/carbo plus avastin.
blondlawyer-good luck with your scans, I hope the breast mri shows much shrinkage and hope the brain mri shows nothing but a great brain!
Is tc taxol/carbo or taxol and that other c chemo I can't think of, the one I am doing with ac?
0 -
Bkj66 my understanding of tc is taxotere and cytoxin or cyclophosphamide
0 -
bkj66, I was in a clinical drug trial before all the brouhaha about Avastin hit the news. Basically, it was treating women with NO evidence of spread as if they did, by giving them two extra drugs (Avastin and Xeloda) that were only approved for metastatic BC. The thought was that there might be micromets they were unable to 'see', and if they hit us hard from the get go, we might have fewer recurrences down the road. I jumped at it (it wasn't a blinded study) and did 8 rounds of chemo over nearly 6 months before surgery.
I got Avastin every time. In addition to Avastin, I got Taxotere and Xeloda with the first 4 rounds, and Adriamycin with Cytoxan with the last 4. I could feel my tumor getting smaller and softer and would visualize myself telling it to "die, sucker!" LOL It really scared me that my tumor was growing so fast that I could feel a noticeable increase during the month between first seeing my PCP and starting chemo. It went from marble-sized (when I found it), to 4.5 cm! That damned thing wasn't messing around, so I didn't, either.
I've gotten comments from people who think I over-treated it, but I wouldn't have been able to live with the anxiety of waiting for the other shoe to drop, so it was the right choice for me.
ETA - as to SEs of Avastin, it makes your blood 'thinner' and take longer to clot, so I had to wait 6-8 weeks after my last dose of Avastin until my surgery. The only other thing I could point to as being caused by Avastin was related to the first: every morning, I would get up and blow my nose and it would have blood in it, ranging from very little to almost a nosebleed.
0 -
hi girls,
Got home very late last night, but with good news! Brain scan is clear! The suspicious spot on my liver-gone! Report did not mention the 2 nodes on either side of my thyroid, so I am assumming they are not there either. And the 3 in the supra and infra clavicle have all shrunk! Praise God, I really didn't expect to hear this report! I also had been prepared to change docs, due to lack of enough information that I was getting from her, but I put my big girl panties on and spoke up. I am a person that wants all the info available, and plan A, with plan B & C in place. I am feeling more comfortable with her now, she gets to stay, for now. So now another 8 weeks of Xeloda, and then a PET scan, all just a few days before my birthday. Wouldn't that be great. Suze35 I hope you have the same results.
Luah, I pray you have good scan results, also.
Blondelawyer, I hope you get to go to Hawaii, we want to plan a "warm beach" trip this winter! You have been through so much, you deserve to go.
Lovelyface, This is some tough stuff we TNBC girls go through, I have had sooo many highs and lows over the last nine years, and I still stress when something gets my attention, it is horrible. Do look to your inner self, seek out the part in you that says "not yet" and pull your strength from that. I have my faith, but I am not sure how much of that we are supposed to talk about. But I LOVE GOD!! There I said it, hope I don't get "moderated" lol. This has already been a long road for me (9 yrs, 5 mo), but I am not ready to go to heaven, "not yet". When I was first pronounced stage IV a close co-worker said to me, "maybe you die in x amount of years, but not today, so live it", later on we would just look at each other and say, "not today". Maybe this can help.
Painting, so sorry to hear about the thrush, nasty stuff. My doctors gave me a mouth rinse, and diflucan, the same as they give women for yeast infection, you might ask about that. And I hear you on the aches and pains, some days it consumes me. I was told tylenol would work better than ibuprofen, check with you doc. I have a nat. path doc at my center and they have an all natural med for the bone pain associated with Neulasta shot. I will ask her if anyone can purchase these products or if there is something similar on the market available to everyone. They worked great for me. Also works for flu-like symtoms, my son took it last time he was flu-like and got relief from the body aches, too.
For neuropothy, I take b6, was on b-complex with extra b6, but Xeloda loses some of it's effectiveness if you take folic acid, thus the change. Nat. path also suggested one of those stimulators, you hook up electro pads to your hands and/or feet and a pulsing mild shock is suppose to stimulate you nerves to wake back up. I couldn't do it, as it reminded me of touching the electric fence we have ( we have all done it here), Heidi, I am sure you can relate! They also reccommended hot cold alternating foot/hand baths. If anyone is interested in that let me know. Maybe now that my heart is a little lighter, I can give more support than whining lol
Hope everyone has a good day....since last Thurs. I have been camping, came home late Sunday night, unpacked, got up Mon morning drove 300 mi in that nasty storm, just got back at 10:30 last night, and dropped into bed. I also finished 3 round of my Xeloda on the way home last night. Soo, I think I will just take the day off!! ((HUGS))) to all!
0 -
congrats rella40! Praise be to Lord!
0 -
rella40: That is fantastic news - you are an inspiration to all of us!!
Painting, OBXX, blondelawyer: hoping all the nasties ease up and you feel better soon.
Titan: Onc had trouble finding what I know is there, so she may think my throat just normally feels like this, or, she said, it could be a low-grade infection that's just not showing symptoms elsewhere (though it's been > 2 weeks). Obviously it could also be big trouble but at a very early stage. So I'm glad she ordered the CAT scan, though I hate waiting.
MBJ: Will a CAT show issues with thyroid? I honestly don't think it's related, as my metabolism is fine, normal weight, appetite and energy to do 2-3 miles every day.
0 -
bkj - thank you for asking, unfortunately I'm still in headache hell
. I am 99% sure it is a migraine, as I have a history of them and they are usually "let down" events. When I'm stressed, and the stressful event is over, the headache comes on. They can last days, which this appears to want to do. I've been taking the edge off with Vicodin, but just have to wait it out...I'm doing both Avastin and Xeloda - for the same reasons Riley did. We are hoping that anything microscopic out there we can't see will get blasted by the drugs. As Riley said, it may be overkill, but I have to do everything I can.
Taxol/Carbo was pretty doable, MUCH easier than AC, although it was cumulative so at the end things were hard. I was mostly tired, and would feel like crap for two days due to my pre-meds. But no specific problems that I can really relate - except heartburn. Oh that was terrible. But that was probably from all the chemo put together. I did need Neupogen shots my last five weeks, so be prepared for low WBCs.
Rella - oh, I am so very happy for you! What wonderful news! You are just a cancer-kicking machine, and so inspirational. I'm glad the Xeloda is doing its job, and I hope it continues for you. And I agree - NOT TODAY!!
blondelawyer - hoping your scans all go well. Scanxiety sucks - Ativan helps
.Luah - I can feel lymph nodes in my neck that my doctor can't find, and they don't show up on scans. Sometimes, we are just so in tune with our bodies, which is a good thing. But nodes can normally be up to a centimeter in size. Is it soft, or hard like a bb? Soft is good. Keeping my fingers and toes crossed for you!
lovelyface - yay on getting the PET scan. Keep on fighting through, Rella really said it best - NOT TODAY.
MBJ - thanks for the positive words about your friend and Xeloda. I'm really hoping it is my magic bullet, but I know how complicated this stupid disease is.
~~~
Heading back to bed with another Vicodin. We know my BP is good thankfully, so just need to ride it out. Have a good day everyone!
0 -
Rella40 - I'm worn out, just from reading your post! So glad the liver mystery has be resolved in your favor. Thank you for your kind neuropathy advice, I awoke feeling much less emotional. They have now identified a biomarker, for people who are at risk for neuropathy. Hope they start using it soon, to help women make more informed decisions.
Also wondering how many of you had chemo first? My MO was in a great hurry for me to start chemo, but I had to have surgery first.
My MO called my cancer a new primary, as it was now TN. My BS said they could never know for sure, because ER+ - could change into ER- . Don't you hate it when two doctors, give you conflicting info!
Wishing everyone great scans and fast test results!
0 -
OBXK: I had chemo first and so far, it's worked brilliantly, but I didn't have a choice
Rella: CONGRATULATIONS ON THE GREAT NEWS!!!!
Suze: We are all here hoping the best with your treatment plan. Hugs!!
Luah: My dr. did an US on my thyroid, that's it. Not sure what a Cat scan can pick up. I do agree with Suze, soft is good, hard grainy pebble like lumps, not so good. Hugs!!
0 -
I took a nap yesterday and slept through my scan! Oops..I blamed it on the chemo
It was rescheduled for Thursday. So I have the breast MRI today and then the brain on Thursday. I am really tired and just feel like I can't get good sleep. I'm sure that it is the steroids, but still very annoying!0 -
Rella-Great news. I have been lurking hoping that you would post soon.
Hello to everyone here. I read daily but don't post too much or too often. Trying to keep up with new people having surgery and starting/finishing tx. Hoping and praying for all of us.
Navy
0 -
Just talked to the oncology nurse and got the go ahead for Hawaii
So, talking to my friend to figure out plans, etc. Yay! I'll be there as an "assistant" for a wedding and a couple of photo shoots (he's a professional photographer), but we'll still have time to explore and relax. It will be sad to go without my husband, but it will be fun to explore some place new and not have to do it alone (I went to Mexico alone for Christmas this year--it was okay, but I was alone).0
