Calling all TNs

teresa008

Here is the reply I received from the doctor that did the phase 2 study on the copper drug:

The taxol is good for you.

TMis not a substitute for standard therapy - at least as far as we know. phase 3 trial not available yet. I don't have a timeline. Kinks still need to be worked out before it is rolled out to a multiple sites.

 

I think the 'at least as far as we know' is very interesting.

bak94

KAren-So glad you talked with Dawn, sorry to hear that she has had more progression.

Stupidboob-Radiation did make me tired, but I was surprised how fast it went by.

Jan-Hope you got good news!

Schatzi-I was 3% er positive, tried tamoxifen and aromasin, I could not tolerate either one, made my muscles hurt bad, but it seems everything makes my muscles hurt. I am really thinking I have some kind of auto immune thing going on.

Karen-Red wine and ativan is my before I get on an airplane combo! Jan, it works wonders!

GuyGirl

No side effects during radiation. Mine are occuring now in the form of Lymphedema.  Not sure if it is being caused by scar tissue from where they took out the lymph node or from the radiation.  Probably from both.

jenjenl

back from the hospital - can check hysterectomy off the list.  A lot more sore than I expected.  Next onto radiation.  Can't wait to catch up!

schatzi14

deyla & bak94...thanks for your replies...I wish the medical community would get a standard of treatment regarding TNs. I guess it's different strokes for different folks. Doesn't leave you feeling very confident tho.

jen...glad you have one less thing to worry about...after surgery, the rads will be a walk in the park. Have they given you a date yet?

jenjenl

schatzi14 - yes I start on 4/29.  I have to finish radiation then another UMX in July then I am DONE DONE DONE and can mentally and physically heal.  I look forward to 2014!  I just pray that I can mentally heal and not continue to be paralyzed by fear of recurrence. I feel that everyday I get stronger and stronger. 

Have a great day ladies. 

schatzi14

jen...you have done everything possible to beat this thing...no reason to think you won't have complete success!

I feel certain positive thinking is the best thing we can do for ourselves.To be perfectly honest, other than old age creeping up, I feel the best I have in decades and am taking far better care of myself now.

The rad time will go by quickly, it's just the time to get there and back again...the actual time to get the treatment is just minutes and away you go...until the next day and so it goes. LOL

I am a very impatient person and I hated the waiting for my turn LOL...good luck and lather the Glaxal twice a day! You will do fine!

afriday322

Hi..I am newly diagnosed TN and was looking and reading through the posts. I see that you live in Las Vegas and looking for a local connection. Thanks!! The posts im looking at are old so I hope you still visit this site!

jenjenl

Doc just called with pathology report - no cancer but found a B9 tumor in the tube. 

Now I can take a good long nap

mags20487

rest well Jenjenl...you have been thru so much in such a short time.  happy dancing for you

Maggie

phgraham

Karen - so glad you talked to Dawn. I've been thinking about her. Very sorry to hear about her progression. She deserves a break.

5andcounting

Radiation was very easy for me in relation to the AC then T.  No burns, a little redness, a little tired but overall, it was cake in comparison. I know that may not be true for all  but it certainly was a nice surprise after chemo.

JAN69

I need to chime in on the rads SE.  My rads were very difficult for me.  I guess I'm a wimp, but I blistered so much they had to give me a week off before they could continue.  I was also very tired during the time.  Doctor and techs said I was about as bad (well, my skin) as it ever gets. 

I hope everyone has an easier time with radiation.  Jan

Cocker_Spaniel

Jan you are certainly not a wimp.That must have been so sore for you to go through.  I can only imagine what you went through. Most of us did have an easier time but I guess it depends on your skin type as well. Big hugs to you girl.

Jen so glad the hysterectomy is over.  Soreness will fade more each day and you will get stronger.  Big hugs to you

I am so sad to hear of Inmates progression.  She has been through so much.  I just don't know where she gets her fighting spirit from.  I miss her being on here and all the other ladies.

Where is LUV, Titan (out running) Kathy, LRM, Minxie, Tazzy, Lovelyface, Gilly and all the other people we know.  Just getting on with life I guess and hopefully.  

We have a day off today for Anzac Day. (Returned Service Men). No shops open today so I am sitting her again whiling away time looking out the window. It is sunny and all I can see if green and autumn colors, so pretty.

Have a good day ladies with hopefully no pain or side effects and nothing but healing laughter.

gillyone

Hi CS, just nothing much going on. BTW we loved Anzac biscuits when we spent 5 months in NZ!

Jan - nothing wimpy about your SEs and rads. Just the way it is. With both chemo and rads, none of us know how we will fare. I am a red head, freckles, fair skin etc but my skin held up really well. The RO said there was no correlation between burning from the sun and skin reaction to rads.

We are finally getting sunshine in the Pacific NW. My tulips are in flower and it feels like time to get started in the  garden.

Three weeks today I will be in England!

OBXK

Jen - speedy recovery wishes!

Stupidboob

thanks for all the replies...............

not feeling to well today, I think I over did it yesterday and today I paid for it and then not really being able to taste things I am eating way to much and the wrong things and then just laying on my butt......oh yeah that helps . 

jenjenl I am glad that your surgery is over and you have one less thing to worry about.   I wish I could get my nerve up to just get all my female stuff out......

bak94

Jen-I had a hysterectomy last October, a little over 6 months after I finished up all my cancer treatment. It was rough for me. Make sure you rest and don't over do anything. I had the da vinci method and could not believe how small my incisions were, I can't imagine what other's go through that can't have it done that way. Even though that part was good, I had extreme fatigue, which is finally getting better after 6 months!

I went for a bike ride today! So funny how wobbly and nervous I was, like riding a bike for the first time. I used to ride all of the time, did the Seattle to Portland bike ride a few times. My hubby was sweet, he stayed with me when I told him to go on so he could get a good ride in. After the ride he pointed out that it took us 16 minutes to ride 2 miles and how many people run faster than that:) It made me laugh and then I said, well, it took me an hour to walk that same 2 miles yesterday! Gotta just keep at it, can't expect to be like I used to be right away, after spending a year on the sofa.

Cocker_Spaniel

Jan was it you who mentioned your thyroid.  I found this on my home page.

MIRACULOUS THYROID DRINK This tea helps the thyroid perform better. This tea is delicious! It helps your thyroid work better, give it a try! ... RECIPE: – 1 cup unsweetened 100% cranberry juice – 7 cups purified water – 1/2 tsp ground cinnamon – 1/4 tsp ground ginger – 1/4 tsp ground nutmeg – 3/4 Cup fresh squeezed orange juice (approx 3 oranges) – 1/4 Cup fresh squeezed lemon juice (approx1-2 lemons) DIRECTIONS: Bring water to a boil; add cranberry juice, reduce heat to low Add cinnamon, ginger, & nutmeg, stir and let simmer for 20 minutes; let it cool down to room temperature Stir in orange & lemon juices...Add ice and enjoy! Please share on your wall for future reference and join us here for more tips and healthy ideas:  All-Natural Weight Loss

 

Good to hear from you Gilly.  You will just be getting to England in time for summer.  Have a safe trip and buy plenty!!

 

Bak would have love to see you on your bike ride and good to know you were having a laugh with your hubby.  Now just don't fall off the bike.

5andcounting

You are most definetly not a wimp. Every woman has a different challenge. I hated my port. Of all the insignificant things, port and hair loss were the hardest for me to swallow. Ah, vanity thy name was Shawn:) (my name)

schatzi14

jen...congrats....the news is FANTASTIC!!!

jan...you certainly are no wimp....I know many of the gals suffered with rads but it will soon pass and once the fatigue is gone...back to normal again

jo92879

Good Morning! I am new to this page. My name is Jamie and I am 33 years old. I have a wonderful loving husband and 3 beautiful children. I was diagnosed with TNBC on Feb 15th, had a double mastectomy on March 13th, and started my first round of AC on April 2nd. I am having such a hard time with the chemo, my first round of chemo was horrible as the meds that were given to me just did not agree with me but by day 7 I had a complete turn around and felt great. My second round on April 17th, they had adjusted my meds but I am still not feeling quite right. I am doubting that I can actually finish the next six rounds. I am so emotional and frustrated, I just want to be done. I am half way through the AC and will start Taxol the first part of June. I am so scared. I just don't know how much more of this I can handle. Has anyone ever felt this way? Am I just being a big baby? I go back on May 1st for another round of AC and I am so anxious about it, it just seems like as soon as I start to feel a little bit better it's time to go back. I'm just not sure of what to do at this point. Does anyone have any advice they can give me? Feel the same? Thank you in advance for any help you can offer...

Marianne52

I had a very difficult time with Rads as well. My skin was very burned with blisters. Finished treatment 3/15 and skin is just starting to clear up. The fatigue for me was worse than the Chemo. Thank God my treatment is over now. Marianne

LuvRVing

Hi everyone, here I am.  Just got back from 6 days in San Juan with my sister.  We were sitting by the pool every morning at 8 and spent most of the day right there.  A cocktail or two and warm sunshine - very therapeutic and I feel great.  Now it's back to reality (chemo this afternoon).  I was reading your posts most every day but was trying to not spend my time on the computer. 

Hope everyone is doing well, and it was really good to get an update on Dawn (Inmate).  I miss her humor.

jenjenl

Jamie - I sent you a private message. 

Luah

Jamie: Sorry you are going through this and having such a hard time. Keep pushing the docs to up or change the meds. It is pretty normal to feel tired and "flu-ish" for a few days (and some women have it worse than others), but today's medications should be able to take away any nausea.  Many women report that some treatments hit them harder than others, so don't depair, it will likely get better.  Also, many women report that taxol is much easier to take than AC (I felt practically normal on taxol), so again, try not to despair.

Are you getting enough rest? It must be very difficult with 3 young kids, but rest really does help in managing side effects. Chemo is a crappy ride to be sure, but you'll get through it. 

JAN69

Thanks Cocker - I'm still sitting by the phone waiting for biopsy results.  I'll go to store to get ingredients when I finally hear from doctor.  I was warned it would take about a week for report, but I was hopeful it would come sooner.

To those of you new to thread and those suffering, hang in there, it does get better.  I wanted to give up so often during chemo, but somehow found the strength to keep going.  You can too. 

Find some joy today!  Jan

Titan

Hey Jamie...chemo sucks big time...i wanted to quit after each treatment...my only suggestion to you is to check in with the chemo threads on here...you can talk with women going through the same thing at the same time as you....it really helps alot..especially when you are ready to quit..I remember reading about women that were done and thought I would never reach that point..but I did and you will to...just want you to know that we are hear for you and please come on here and rant about the chemo as much as you want...it really does help!

Thanks for the update on Inmate...I think about her alot..love you Inmate!

Hey Cocker...I'm still around....and yeah still running..planning on doing several 5k's this summer/fall....and yeah..your thighs better be clapping...lol...I still laugh about this every time I run...love you all

Got the mammo and 2 appts. coming up in May...geesh...I know I've got to go but really don't want to...going to schedule a colonoscopy too...blah...

phgraham

I started Zelda/Ixempra on Tuesday. Tuesday and Wednesday were okay. Today has been not fun. I am so glad my DS is here looking after me this week. I'm hoping this gets better soon!



Phyllis

OBXK

Phyllis - I hope tomorrow is a better day.