Calling all TNs

cleob

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. 

MBJ

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!!

MBJ

jenn3

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)))

Fighter_34

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.

tnbcRuth

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.

Suze35

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.

Swanny

Yeah, Yeah Laurajane!!    I just read all the back posts I missed for about 4 days.  FANTASTIC!

beetle25

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.

Fighter_34

Question ladies: I was put into chemopause right after my first tx, when does my monthly friend come back or will it??? 

Anonymous

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!

beetle25

Fighter:  finished treatment in June and I am still in chemopause, my onco stated that he doesnt really expect mine to come back bur I am 46.

NavyMom

I went into chemo pause after TX #2 at the age of 49.  Onc says things will stay this way.

Navy

jcoutee

i am experiencing hot flashes and my cycle has been gone since i started taxol # 3, i'm on #8 now.  I'm only 28 so the Dr's said it should return but no promises

Babs37

Hi everyone,

Almost 1 week out from mastectomy and axillary nodes dissection. The mastectomy part is not so bad, almost can't feel the scar. But the node dissection part hurts quite a bit. I try to do a little exercise for my arm but it feels like if I have a rubber band that keeps my arm from lifting and it is very sore. Even the skin under my arm is soooo sensitive. I have to sleep with pillows behind my back to be almost in a sitting position so it doesn't stretch to much when I get up. And the drains...... boy do I hate the drains!!!! I am lucky that my friend is a nurse because she can come over to change my dressings and clean my scar and drain scar so I don't have to go to the clinic everyday for that. For those of you who had axillary node dissection, how long does it take to stop hurting? 

gillyone

Is anyone going to the Vegas reunion on September 30? Tomorrow is the last day to sign up.

TifJ

Beetle- thanks for the info re: the cough. I guess if it has not gone away by my next onco. appt. in late March, I will bring it up with him!

Fighter - I had a period right before I started chemo in late Oct. and have not had one since. I am 45 and my onc. says it is doubtful it will come back, but he has seen it happen in women my age.

laurajane

Hiedi- Love it, and love you. Thanks for all of the tickles and smiles you have given me.

Andrea- I PM'd you but I agree with Ruth I felt my tumor shrink fast (Almost couldn't feel it) with Taxol at first and then my cancer overrode it and started growing back fast! 

Michelle- What can I say? I'm so sad and sorry about your brain tumor but happy? about it being the good kind. I hope someone will make you homemade soup and deliver it to you with a smile. 

CC4npg & Gillyone-  My nose is still running.LOL

Hi Jenn- I wasn't able to work during AC but I am a landscape designer and I do mostly physical work. Even though I have a fabulous crew I pretty much lied low during it. I felt much better on Taxol although as the other gals on here heard I developed an unbelievable craving for chocolate. I would dream of it and my mouth would start drooling for it during the infusion. I hope the chemo works for you and you are able to do a lump instead of MX.

Fighter- Wow! For some reason I am going through a kind of delayed depression also. It sucks.

Babs- I am still tight had my surgery last Fall. I also still have pain I thought it was my cancer growing back but with my clean pet I realize my onc is correct in saying that it is pain from the surgery. I also have really sharp pains that come and go. Kind of nice knowing it is normal. I didn't go to a PT although I kind of wish I had now.

Suze- Here's to next time in NYC. I hope your MRI shows there is nothing to worry about. Have you tried acupuncture? I realize that these words don't really help much but I am sending positive vibes your way.

Thank-you again to all of you lovely ladies for your cheers! It has been a pretty good day today the sun even came out for a while. I had a great time last night. I went to a "Sex Toy" party (First time). What a hoot! I really had a lot of fun and spent way, way to much money. Hmmm? What does that mean? LOL. I think I need some of Heidis' men friends. Ha Ha! Long distance relationships can be a drag sometimes.

Anonymous

Sex? Toy? Tell me more...

tnbcRuth

Suze- When I was severly anemic years ago, I had a terrible headache the entire month!!!  Maybe that's it....anemia can trigger all sorts of malaise.

 Babs- unfortunately, its gonna hurt for awhile where they took out the lymph nodes.  But it WILL quit hurting eventually.  I would say 2-3 months honestly. 

Sugar77

Fighter - I had my last period during my second chemo treatment in Jan. 2010 so it's safe to say mine's not coming back.  I was 45 at the time and my Onc said there was an 85% chance the chemo would put me into chemopause.  I'll admit, I don't miss is at all.  I've had two bouts with hot flashes (off and on for about a week each time) but nothing major.  Perhaps there's more hot flashes to come but hopefully not.

Heidi - I'll be in touch soon about our plans for Washington.  My sister and I already have our flights booked.  We're going a day early and staying a day later to make a mini vacation out of it!

LJ - I think we need to know more about this party.

jenn3

Babs - I did have pain under my arms for about 6 weeks or so, then one day I realized it was gone.  Make sure to stay ahead of the pain, once it gets ahead of you it's harder to deal with.

Titan

Fighter..about the chemopause..your onc can do a blood test on you (like you probably want to give more blood)..I forget what it was called (imagine that)..but it will tell you whether or not you are in permanent menopause...my DH and I wanted to know so that we could..well..you know what I mean...(blushing here)..(guess I need to go to a sex toy party..ha ha).and I found out that I was TOTALLY infertile..not sure how old you are but I was 49 at dx so there wasn't much chance of my "friend" coming back.

Gilly..I would love to go to Vegas..one of my favorite places..but my DD is getting married on October 1st...I think that trip would be totally awesome though!

Heidi..still thinking about the DC trip...I talked to my DH about it and he said that he thought if I needed to go..that maybe I should..I'm still thinking about it..would love to see you all!

Sugar77

Titan - you really need to go to DC so we can meet you in person!!

I had the blood test done during my routine physical last June.  My GP checked my estriol levels. And, while I wasn't in the official menopause range, I was significantly lower than a women who is having regular periods.  My score was 188 and the range fluctuates between 400 and 600, according to my doctor. 

NavyMom

Ummmm, I went to one of those "parties"   I was just laughing the whole night.  Was after chemo #4 and I looked awful and didn't really feel that great either.  BUT what a hoot.  All kinds of lotions, potions and "toys". You can even buy a little "safe" that has a combo lock to store all your stuff so wandering children can't get into your stash.   Gosh how I remember giggling as the lady was explaining what do with the various items.  Now if I could just get my Mojo back in gear.........

Navy

Anonymous

Mojo... yeah, I haven't had much interest either. Anyone else want to chime in on this? I know we are all at varying stages in our life, but we're not dead yet.... sometimes I just think I am wrt to this subject.

Anyone?

NavyMom

oh boy, here we go......

laurajane

heidi- I haven't lost my libido but with the chemopause I do have vaginal dryness which is an unexpected drag. i just bought some mint flavored edible climax gel at the party I went to and also ordered a new kind of lubricant among other toys. Ha! Ha!I wasn't really in the mood while I was on AC I just felt horrible and hurt all over as many of you probably did too. I have noticed sadly that my boyfriend does not have the same desire for me that he had before BC. I'm hoping to rev things up when I see him next time he is in town. By the way, what is wrt?

Titan-& Sugar- I am 47 actually will turn 48 on March 10th but a year ago December I became pregnant and actually had to do chemo to abort it. It was stuck in my tube entrance to my uterus due to fibroid tumors. I had had that blood test and it was really low around the 100 range and was told that to become pregnant I would need to take pills to up my chances. I was actually getting regular acupuncture to try and shrink my fibroid tumors. Ironically I first felt my lump a month later.

By the way I have been working on more paintings. I started painting when I started chemo and they kind of depict what we are all going through. I was asked to put one in an art show this coming Saturday. It's so complicated to try and figure out how to post photos on this thread at least I haven't been able to figure it out. If anyone wants to see them I have them on my facebook page. Just PM me and I will tell you what it is. Hope everyone had a great evening.

laurajane

Hope I wasn't to blunt or explicit, I sure don't want to offend anyone. My apologies if I did offend anyone.

cc4npg

Mojo who?  Libido what? Haven't seen those in a while myself!  But then with all the stress of fighting cancer, I'm not surprised we have a loss and I contribute a lot of it to that stress.  So far, I haven't really missed my mojo and I'm sure it'll come back somewhat.   As for the monthly friend coming back, I haven't had one since the end of October and I had hot flashes during chemo so I figured I was probably in permanent chemo menopause.  However, that being said:

I'm on the other side of my oophorectomy and exchange surgeries!!  Yay!  So definitely no more cycles for me!

My surgeries were yesterday... Monday, the 28th... outpatient.  I slept the rest of the day and I'm very sore, mostly from the ooph.  I'm excited to view my new tata's!  Strangely, I haven't had a hot flash since surgery (yet).  I feel pretty good.  My right eye is not seeing clearly though and that's driving me nuts.  I think I need reading glasses JUST for that one eye!  It's fixable so I'm not too worried, just aggravated.  The gas pain from the ooph really isn't fun, but I'm not too bloated.