Calling all TNs

Karen,  May God bless you and give you peace. Although I am still in the "fighting with everything I have" stage, I know there will be a time when i too will say enough is enough.  This is your decision and don't let anyone make you feel guilty, for unless they have been in your situation, they have NO idea of the toll it takes on us both physically and mentally.

I also wish the rest of you well. I'd like to know if anyone with a recurrence and te's had them replaced with permanent implants or removed or just left in place. My recurrence is in the skin and I'm still not sure what the plan is if my xeloda works. The te's are so hard they are very uncomfortable, but for now the bs and mo both said no surgery yet. I have a very difficult time sleeping, and I'd rather not go on any additional meds if I don't have to - don't want to make the liver work any harder than it has to.

I found this over at the TNBC Forum:

A crack in the triple-negative breast cancer’s armour: key enzyme discovered

"For the longest time triple-negative breast cancer has stood before medical professionals as the black knight, protecting its virulent self with a stubborn resistance to chemotherapy. But now, a research team of Canadians and Australians led by CRCHUM’s Dr. John Stagg has found a crack in that armour by identifying the enzyme that makes triple-negative breast cancer so resistant to chemo treatments...."

Rest here:
http://biotechnologyfocus.ca/a-crack-in-the-triple-negative-breast-cancers-armour-key-enzyme-discovered/?utm_source=rss&utm_medium=rss&utm_campaign=a-crack-in-the-triple-negative-breast-cancers-armour-key-enzyme-discovered

Hi:



I have not posted here yet but I am hoping to get feedback from from those here with a similar diagnosis and treatment plan to help me make a tough decision.



You can see all my stats below my signature line. I am doing taxotere and cytoxan chemo. On my 3rd treatment they ran it faster than the first 2 and I had some new side effects, including tinnitus. I was sent to an ENT who said my hearing loss was normal for my age (60) and prescribed a 5 day course of steroids which did nothing to improve the tinnitus.



I went today for treatment# 4 and also met with my MO. He suggested that I stop at 4 treatments based on my side effects particularly the tinnitus as he fears if I continue I may damage my hearing. When I started he told me I would do 4-6 treatments based on my response to the treatments. He also said that 4 is standard but he feels 6 is better.



So can those of you with similar stats and on this particular treatment tell me how many treatments you had? I am worried about stopping at 4 because chemo is our best defense. I will also being doing rads.



Thanks very much!

Encyclias thanks for trying and posting the test but I've given up now and will believe it when I see it.  

Karen--You are my inspiration. Enjoy summer time with your family. (((((hug)))))

Actually sweetpickel the entire conversation was with my MO. He is the one that thinks I should stop at 4. His concern is possible hearing loss. We did not discuss a different treatment plan though. He thinking is that since I have had some other issues with side effects that we are pushing our luck with proceeding with more. He says 4 treatments are the standard treatment. Ut that he feels 6 are better when they can be tolerated.



Thanks for your reply.

Goldie:  Please post back and let us know how it goes for you.  Fingers crossed that your hearing starts to improve.  I will say, that a few years ago, my Mom got her concealed handgun permit and during the training course she blew out her ear drums, and never regained her hearing. She had ringing in the ears for a few weeks, and she lost her hearing. She wears hearing aids now.  The docs all said it was normal hearing loss for her age, but we don't believe it, as nobody in our family tree has hearing problems and this happened when she was about 67 or so.  I feel terrible that she has to go through this at her age.  She is now 75, but she is otherwise extremly healthy, lively and feisty.  So I know this hearing loss has been hard on her, it's slowed her down in some ways, and she can't enjoy TV, but uses the closed caption.  It breaks my heart to see her have to change so much due to the hearing loss, but the docs said it was normal.

Make sure you have all the hearing tests done to determine if this is due to your age or the treatment.  I would think it was due to the treatment, as I read just the other day that our treatment had that as a possible side effect. And if it's due to treatment, is there a chance that the damage is done and wil not change over the next two final treatments?

Please let us know what you find out, what John Hopkins has to say, and the results of your test.  Fingers crossed you get good news!

First I'd like to say that I'm saddened by some of what I'm reading, and sending hugs and prayers to all that need them. 

Goldie - I was on a treatment plan of 4 TC (cytoxan,taxotere), even though my husband would tellyou I act like I'm healthy and do most of what I did before, my side effects have landed me into the hospital, doctor and lastly (after 3rd infusion) a major allergic reaction that my coworker described as a violent attack on my body.  My MO has given me two choices, one is to stop here at 3 and the other was to add a round of AC.  She said the risks of side effects at 6 is to great and 4 is standard for me.  She said a lot of people stop at some point and if you get 75 to 80 percent of treatments you are in "good shape" - whatever that means.  We decided that since I have a small chance of aggressiveness from triple negative that this is the point to fight it and we are going with my final chemo of AC.  So if you already had 4, you are ahead of the game from where I am.  Lets pray we are all on the right track.

Speaking of AC, I know there are many forums, I've read its called the red devil or something, can anyone give me a quick rundown of side effects, for some reason I feel very afraid of how I will feel on AC.  Up till now I've been driving myself to and from TC treatments an hour away.  My husband stays with me thru treatment but he works nights in NYC and I meet him at work and we drive over together.  Will I still be able to do that.  I only have to do one. 

I appreciate this forum more than anyone can know.  Even if I dont comment I am always reading and feel better to be here knowing we are a sisterhood and we and only we truly understand this battle.

Have a great day everyone.

Goldie I only did 4 rounds of the Taxotere and with the shortness of breath and rapid heart rate I will only do it again if I have too.   If given the choice right now I am not sure I would have done the other two but with that being said I can't say for sure because my MO only said 4.   I guess one way to look at it is that if you only four you will have two to fall back on.   I am not sure if there is a cut off though with the Taxotere.  I know they just keep using Cytoxan.   I never heard of it causing hearing issues.   Best of luck

I am trying again...............I go tomorrow to meet with the RO are there anythings that I need to ask about that might not pop up until later.   Anything you can tell would be appreciated.

Hi Stupidboob,

I didn't have radiation but am wondering if there is a list of questions on the Rads Forum. I am like you and want to be well armed for all my appointments.  Best of luck in getting some information for tomorrow.

Karen, that is wonderful!  I am sending prayers that you qualify for the trial, and that miraculous things happen.

Carol

ok, now I remember why I did not go to the radiation forum.     They scare me to the point of not wanting to do radiation.    PLEASE just give me any advice you think I need..........if I stay over on the forum the only thing I am going to do is cancel the appointment.

Stupidboob, ask your RO flat-out what damage to expect to your internal organs (heart, lungs) from the treatments.  Mine said there would be some scarring at the very top of my right lung, but that it shouldn't even be noticeable functionally to me.  I asked about my heart, and he said he would keep the beam a 'zipcode' away from my heart.

Stupidboob, I don't know if this helps but I met with my RO last week & some of the things I asked were what areas were going to be radiated and why, the short & long term side effects, what supplements I could take and what products I could use on my skin. I should start sometime next month as I still have 2 taxol tx left (next one tomorrow). I'm really scared... she said a major risk is LE & problems w/ reconstruction.