Calling all TNs
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This had photos that didn't come through but I think you guys will still get a chuckle out of it:
MY NEW BOYFRIENDS!!!
I am seeing 5 gentlemen (give or take) every day!.
As soon as I wake up, Will Power helps me get out of bed.
Then I go to see John.
Then Charlie Horse comes along, & when he's here, he takes up a lot of my time & attention.
When he leaves, Arthur Ritis shows up & stays the rest of the day. He doesn't like to stay in one place very long so he takes me from joint to joint.
After such a busy day, I'm really tired & very glad to go to bed with Ben Gay.
What a life!
Oh, yes, I'm also flirting with Al Zymer,
Or whatever his name is. I forget!
and I'm thinking of calling JACK DANIELS, JIM BEAM, JOSE CUERVO or JOHNNY WALKER to come over and keep me company.
Now remember: Life is like a roll of toilet paper.....the closer it gets to the end, the faster it goes. So have fun, think 'good thoughts' only, learn to laugh at yourself, and 'count your blessings.
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My surgeon never really discussed a mastectomy with me. She mentioned it as an option if I was BRCA positive - which I was not. But other than that, not a word. I does not matter because I would have chosen lumpectomy if a choice was discussed.
I later learned that my surgeon has pioneered several breast conserving procedures (SNB, and some sort of skin saving procedure), so maybe she just naturally gravitates to the least intrusive options.
My onco is very conservative too. In fact, she has had to do things she normally does not do to appease me . . . lol. My first follow up with her is tuesday. Looking forward to the "I am uncomfortable with no scans unless there are symptoms" approach. . . lol. Hopefully she will be as accomodating with that as she has been with my other neurotic demands.
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Wow..Heidi..you are busy aren't you?
And about the recovery from the mast..I just couldn't take it..off work for SIX WEEKS! I don't think so... My SIL thought I wouldn't be able to golf...I can still golf.....
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Ladies, I need your opinion.
I was diagnosed in 8/2010 with TN IDC. I am 33 with no risk factors, BRCA neg. It appears this tumor is particularly aggressive. I chose neoadjuvant chemo. I took 4 rounds of AC every 3 weeks. I ended up having to take a break due to insurance change and just got started on Taxol weekly X 12 doses. The tumor grew from 2.5 cm to 3.1 now. My onc says that if the tumor doesn't shrink by treatment #4 (i just finished 3 today), then we're gonna stop and do surgery.
Questions: for thoses that did neo: how soon did the tumor start to shrink? Immediately, over a couple treatments? Was it noticeable or only on MRI/US/mammo did it shrink?
FOr those that the tumor did not shrink, did you get a third round of chemo? What was your combo?
Second unrelated question: for those that choose reconstruction, how many were looking at reconstruction for a size D/DD and to keep that size?
Thanks so much for any feedback!
Andrea
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Andrea...welcome to the tn thread...I believe Laura Jane was in the same position as you with the neo chemo...she will probably be along to help you but I think her first chemo didn't work so she had surgery and then she did a different cocktail..and she is now NED Yay!
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I had neo and the tumor shrunk noticeably within 3 weeks. By the time I got to surgery 6 weeks later, there was necrotic tissue about 1/2 the original palpable size and 'no' cancer (<1mm from 2.5cm). I only had one treatment but it was very strong as I was in a clinical trial testing dosage. (avastin/taxotere) When I read your post, my feeling was concern. Some tumors just don't respond to certain chemo drugs but do respond to others. The choice is yours to direct the onc to what you want to do. My personal opinion...I would try another chemo drug or go straight to surgery. Is it correct that you have been doing chemo on and off for about 6 months??0
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cmksocal: I just finished readng some of the posts about cold caps. Sounds impressive and I think I would be a good candidate since I am in the grey area. I think I would be doing TCx4 as well. Wow, to live a life closer to normal during chemo would be amazing!
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Hi TN Sisters!
I dropped off the map a few weeks ago when the brain thing started. I spent a lot of time waiting and sitting staring into space. I was still but my mind never stopped running.
There were many scans, some of them so high-tech that few hospitals have the machinery to do them. Luckily, my hospital is one that has all the bells and whistles. After being scanned in every which way and meeting with the chairmen of the neurology and otolaryngology depts. I was told have have a brain tumor.
BUT (and that's a big but) it is "the best kind of brain tumor to have" --- oooh lucky me!
It's a benign meningioma and I've probably had it for years. It is not cancer or related to bc. I will have to address it at some point because it is near my optic nerve on the left (my bc side) and could impair my vision as it grows. However, these tumors grow very, very slowly so I can move on to treating my bc and do another head MRI in 3 months to access the meningioma's growth.
When I treat it, they will use radiation to kill it but leave it in there. Kind of icky, but better than having my skull cut open. I get to keep this tumor because it's the "good kind." LOL! (Sorry for my dark sense of humor but it is what's getting me through some of this)
Anyway, long story short: I start chemo on Thursday and am scared. I'm doing TC 4x every three weeks with the Neulasta shot the day after each infusion. Then rads.
My onc tells me this is the standard of care for my dx. I said I want as much as I need but she says this is what I need. I'm just worried about recurrence if I don't throw the book at this bc crap. Anyone else do the TCx4?
Also, any suggestions for how to prepare? I've been researching headwraps/scarf tying; signed up for the Look Good Feel Better program; am being fitted for a wig the day before 1st chemo and will cut my nails this weekend.
Anything else? Like, should I buy soups? Should I get special clothing for comfort? What over the counter meds should I stock up on?
I will take any suggestions you have!
Thank you, from one sassy but scared soon-to-be chemo girl.
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Hi Michelle - I had TC x4 as well. I finished a year ago and while it's no picnic, it's doable and you'll be through it before you know it! If you want any information about my experience with it, send me a PM and I'd be happy to share!
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Andrea: Kinda hope laurajane responds to your post. Personally though, I'd get another opinion and if it wasn't shrinking, I'd say GET THIS THING OUTTA ME! I know not all tumors respond to the same chemo. Laurajane is a perfect example and hers grew while on chemo. However they have since found a chemo she responds to and she's doing well! Some other ladies will respond soon...
Michelle67: I did TC x 4. There is a thread called "Anyone on just taxotere and cytoxan?" that I advise you to read over. There is also another one that just started up called "anyone beginning TC taxotere and cytoxan in Feb. 2011". I did well with TC, and thankfully didn't have to have adriamycin, which I'm told is pretty hard to take. I took the Look Good Feel Better class too, and it was nice. They'll give you a scarf, and wig if you need one, and maybe a hat, as well as make up. I didn't cut my nails. I did get a wig, but never wore it! Over the counter meds... you'll need something to soften stools! And something to prevent diarrhea! I took vitamins when I could during chemo. Get some juices because water may taste yucky. And DRINK LOTS during infusion and after infusion. Get Aleve and Claritan. Do not get Claritan D... just regular Claritan. Taking Aleve and Claritan after Neulasta will help with bone pain (for which I never suffered even if I didn't take them... my skin just kinda hurt along my neck and back... kinda weird). Clothing... can't really say much about that.. I was comfortable in whatever. Check out those threads above though.. they'll help you A LOT!
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Oh... I forgot... get tissues too. You may have nose bleeds which is normal. PM me if you want and I too will be happy to tell you my experiences or answer questions.
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Michelle - lots of stuff going on with you! I had a wig but hardly ever wore it. I almost lived off soup during chemo (AC/T) as nothing tasted good. You'll find as you on what works for you.
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I agree with the tissues - I didn't have nosebleeds, but had a permanently runny nose. Very annoying.
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Michelle- you will get a lot of good advice by others more verbose than myself, but wanted to mention something that came up that I didn't handle well. I couldn't drink enough fluids and dehydration caused a lot of problems and made me feel much worse. You can get a saline infusion any time, and even get a rx for the hospital if its over the weekend. You'll do fine !!
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Hello Everyone
I am have triple negative receptor breast cancer 4cm. I recently received my BRCA results I am negative.My treanment 4 cycles of AC every two weeks then Taxol for 12 weeks then surgery with radiation.I just had my second round of AC yesterday. With theTaxol should I expect the same level of fatigue? I work full time approx with driving time 12 hours a day when i get home i am really tired sometimes at work I have to catch myself.I know i should not have long hours but financially I can not afford at this point not to work full time.My employer is very understanding and knows my condition.I was hoping maybe someone else was in my position and had some advice.
Also I know my surgery is a little down the road but I wanted to start preparing myself.I was thinking of possibly instead of a lumpectomy to have a bilateral mastectomy with reconstruction.I don't want the possibility of the cancer returning .Presently it has effected my left breast.
Anyone with similar concerns?
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I\ve been away for a couple of days, and trying to catch up.
Laura jane: So very happy to hear your news. After all you've been through, you deserve it!!
jenkwa2: Sorry you had to join us, but you will find lots of information, insight and inspiration from the ladies here. I did 4 dd AC then 12 taxol. I found the taxol much easier to tolerate - I almost felt normal - and worked throughout. That said, everyone's different, and I know some on dd taxol have had painful neuropathy. As for lump vs BMx, there is another thread on that subject. Whatever you decide, please know that even with a BMx, there is still a chance (albeit small) of the cancer returning.
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michelle - I too did TCx4 and know many people here and few people outside of here that did it for stage 1 TN. I think it is fairly common for stage 1.
I did really well on TC with few problems. Here are my tips, most derived from others here:
Nails - use bags of ice or frozen peas on your fingers and toes during the taxotere infusion to prevent nail problems.
Mouth - eat ice chips during taxotere to prevent mouth sores/thrush.
Drink tons of water the day of the infusion and for a few days after.
Get Emend and Zofran for nausea . . . I was never even slightly nauseous.
Zofran causes constipation - I took OTC colace while on the zofran and was "normal." (sorry if TMI).
Hair - no way to prepare for that. It sucks. But a great wig makes a huge difference.
I did not have the neulasta shot - never needed it. It seems to me that it comes with its own set of SEs. Hopefully others can offer help on that.
I know everyone is different, but I found TC to be surprisingly easy. I worked fulltime the entire time. The only days I missed were the infusion days. I had one bad day which always fell on saturday - that day was like having mild case of the flu - some muscle aches and I slept a lot.
Good luck and feel free to PM if you have any specific questions.
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Jenkwa2:
I did the 4 DD A/C and 1 taxol and was then changed to 3 more DD Taxotere (due to neuropathy). I did not have an easy time with any of my chemo, and I personally found the Taxol/Taxotere to be far worse than the A/C - but I am still here and made it through a mess of things from the chemo. I also wanted to add that I was 62 at diagnose (a young 62!) and was able to work throughout it all with the exception of the week I was hospitalized with febrile neutropenia (right after my first A/C) - and then only took thursdays off (day of infusion). I wish you the best - and remember - it will end, I promise!
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Michelle- I too had 4 x TC. I used Biotene toothpaste and mouthwash everyday and never had a mouth sore. I tended to get diarreah vs. constipation. Immodium helped correct that. I never had the nail issues, but icing them seems like a good idea just in case. With tx 1 and 2 I usually felt icky days 4-7 then began to feel better. Tx 3 and 4 I felt icky days 2-6. Everyone is different. I am a stay at home Mom so I didn't have to worry about work, but I would say there were only a couple days each treatment where I felt really bad. I used Aleve for Neulasta pain and no issues with it. I wish the best- please don't hesitate to ask any questions!
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Hi everyone.
Andrea : do not be discouraged, it is doable and the right treatment combination will be found. I started with weekly Taxol and after 9 treatments of 12, it was suspended because the tumor progressed. We switched over to AC for 4 completed cycles, the tumor shrank to half its size after 2 ac teatments. I had a lumpectomy, one node out 22 nodes was slighly positive, all clear magins, then 33 radiations and to continue with 3 Abraxane infusions. Guess what, while still in treatment, we found a cancerous cell in my groin and some nodules in my chest wall close to the area of surgery. we are currently awaiting results from the excised tissue and genetic testing for the next line of treatment, but for now I am on XEloda. This thread has helped to empower me to know what to to ask from my BS and ONC.
Laurajane: congratulations on your clean petscan result.
Lovelyface: Eventhough i am 5% weakly positive, my BS believes i am TN but my ONC thinks otherwise. my concern is that I be given the right treatment.
you all have a wonderful weekend.
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Jenwa2: I don't know how long you have worked at your job but every state allows for family medical leave and state disability covers you financially for 2/3 or your income if you have paid in enough money. I found that my income was slightly reduced but since I was no longer driving and paying for gas and eating out every day, it was a wash and doable. There are many here who have worked through chemo, but for me, my health was more important. Whatever you decide to do, you will, as the other ladies have said, get through this!
Michelle: Wow, you are going through alot. You have to keep your humor when it comes to cancer--so many things are so unpleasant and reduce you to being almost like a sick child. That being said, I had 6 x TC and I was fine. You have been given great advice by everyone above. I used Mag07 for constipation as for me, it worked better then the stool softners. I also bought Rebecca Katz's cookbook for cancer which gives you many recipes and tips for eating while undergoing chemo. Chemo for me was like asking to get the flu once every three weeks, the forth and 5th day I just felt like crap, food tasted awful and metalic, going to the bathroom afterwards was a nightmare, and I had to have help with everything--cooking, cleaning--I just had no energy. The worse part for me was losing all of my hair. Talk about humbling!
Andrea: PM Laurajane as she went through this, too. Hugs!!
Heidi: As always, thank you for the great laugh. BTW: Does your DH know??? Lol!!
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Michelle - all I can say is WOW, you have had your plate full recently. I am glad to hear that the brain tumor isn't related to BC, but am sorry to hear that you have something else to worry about and keep an eye on. (((hugs)))
Andrea - I don't have experience with what you're going through, but wanted you to know that we're here for you and I'm sure someone will come through with words of advice.....(((hugs)))
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LJ--I am so HAPPY for you. Good news and it sounds great.
Jenn--so sorry about your progression
Been silent ladies just thinking being out of treatment is hard; harder than going through TREATMENT. Cancer SUCKS!!! Sending well wishes to us all. Not fair I can't imagine not being here for my kids.
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Fighter-there is a transition period and it can be rough. A lot of us have had depression and/or anxiety. Just keep your eyes fixed on the future and your kids and you'll work your way through it.
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Michelle - I was getting worried when you didn't post, I'm so glad it isn't BC related and that it is the "good" brain cancer. How awful to have to think of it in those terms, but what a relief!
As for chemo, my worst problems were fatigue and feeling crappy from low WBC counts, so I don't really have too many suggestions. Oh, and GI issues. Stock up on Prilosec, and start taking it regularly before any heartburn gets too bad.
I had a decent time in NYC. Got to the Met and the Guggenheim. Unfortunately I couldn't enjoy it like I wanted, but there will be other trips.
I'm still having head issues. Not so much headache, but a little pressure, and a fuzziness/dizzy feeling, along with being very weak and tired. I know I'm anemic, so I hope it is all related. I'm getting my MRI Wednesday, but my doctor is out of town so unless she checks in for me, I won't get the results until Monday. I'm too chicken to get the report and read it myself. I'm not sure I could handle bad news with my doctor out of town, if that is what it is.0 -
Yeah, Yeah Laurajane!! I just read all the back posts I missed for about 4 days. FANTASTIC! 0
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TifJ - It lasted for about 2 months following chemo and then it seemed to slowly go away. I also ended up with bronchitis right after my last chemo so that could have prolonged the cough. However, no one seemed way to concerned about the cough and I had surgery one month following, the last chemo.
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Question ladies: I was put into chemopause right after my first tx, when does my monthly friend come back or will it???
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DC trip Weekly Reminder: nothing really new to report. Just waiting on those of you planning to go to contact me about taking one of the rooms. Looks like my adult kids plan to split the room with me and do their own thing while we do ours.
Parade Route- appeas to be about 2 blocks from the hotel. Those wanting to view it can obtain Grandstand seating (check the CBF website) or view from the sidewalks.
Restaurants- it appears some may give discounts during the festival. Capital One CC is also doing some kind of discount if you use their card during it.
Photo Contest has begun. See link:
http://www.nationalcherryblossomfestival.org/?customernumber=2818343617882&id=390
OK, based on a day's worth of input and several people's input I have booked four (4) rooms for the Weekend Rate at:
Washington Marriott at Metro Center
775 12th Street NW
Washington, District Of Columbia 20005
USA
Phone: 1-202-737-2200
Fax: 1-202-347-5886
HERE'S THE DEAL: I have requested all rooms be in proximity to each other
2 rooms are being held at the $289 per night rate 1-4 adults allowed NO breakfast allowance
1 room is being held at the $309 per night rate 1-4 adults allowed WITH breakfact allowance
So, there is potential for as many as 16 participants but obviously 2 per room would be best IMO (for a total of 8).
Right now we have about 6 interested people. The rooms can be canceled with no charge up until 6 pm April 8th. The rooms are being held under my name.
Here's what you need to do:
PM me when you know your plans. The rooms are being held under my name. I will give you my last name and you can then contact the hotel yourself and take one of the rooms and pay for it.
If I don't have commitment to cover 4 rooms I will cancel whatever is left unclaimed upon my arrival that day with no penalty to me.
Is this clear? The hotel is 1.5 miles from the Tidal Basin where the CBF takes place. It is located by a Metro station. Parking is $34 per day but $45 with a van or SUV. I will probably have my husband drop me off and pick me up to save on ridiculous parking fees since everything is so close and driving in DC is typically a nightmare.
If we need more rooms I can probably get them for awhile (and hopefully in proximity to the ones we already have on hold), but his will change, as they do book up as CBF nears.
I am really excited by this, and I hope you are too! I want to reiterate that anyone not comfortable with these plans has the option of checking out the links I provided earlier and making their own reservations.
See you in April!0
