Calling all TNs

welcome Liz.  This is so hard in the beginning to know what is going to happen.  Once you and your doc get a plan in place it does settle down just a bit.  HUGS to you

stupidbood---this is the best place for venting.  We are the ONLY ones who understand and have felt the way you do right now.  I am guessing that your hubbies lack of support stems from the deaths around you both.  He does not want to loose you and therefore separates himself from the situation.  Be strong my friend.  This phase will pass too.  Cancer does change us and sometimes those around us.  For now scream all you want- you deserve to get it out.  Wishing you all the best as you continue your fight to conquer the beast HUGS to you too!

Maggie

Erg each, very hard for anyone to decide. You're suggestion of asking how many months (or a range of months) your Mom would have if no chemo sounds like a question you should call the MO to ask.



Also, since the stroke can your Mom read? If so she could nod yes or no if you wrote down the choice, once you get an answer to the above question.



Sorry, these two suggestions are all I have.



Let us know whatever is decided or more questions. We are here for you and your Mom.



Peggy

Thanks Titan. Sending good thoughts out to your mom. Wishing you and the other mom's a special day.



xxxooo

Stupidboob - Yes, I agree it is just way too much for any girl to handle so much.  I am so sorry that you are experiencing so many challenging things in your life, all at once.  All I can do is send you some warm Hugs!  Hang in there, my friend, and just pray really hard.

Ladies, watch this incredible video.  True Story of Cancer patient, Anita Moorjani.

An Indian woman in Hong Kong writes a best seller "Dying to be me".  The book is now published in 28 languages.  The author narrates a personal account of death after life and then life after death.  She is traveling worldwide narrating her experiences and that now she is a changed woman, learning to live life the way it should be lived.

Watch this incredible video.

https://www.youtube.com/watch?v=y1VG7895XnU

(I hope the link works, as I had to type it.  With firefox, I am unable to cut and paste things here).

Hi I was just dx on April 26. I'm 30 and trying to make up my mind on a doctor/hospital. Mine is 3cm and going into my chest wall so I need to start chemo ASAP. Only concern with doctors are one onco wants to do A&C every other week 4 times then taxol every other week 4 times and the other onco same A&C then 12 weeks of taxol instead of the 4 higher dose. Which is better? I'm so confused. And the one that wants to do the 4 every other week is a great big hospital and breast cancer oncologist.

Anyone have any insight?

Help. I know I will be fine with either one I just can't seem to make up my mind.

Thanks in advance

Hello CNmylife - I am so very sorry to hear that you have been diagnosed.  For God's sake you are only 30 years old.  Do you know your hormone status, is it TN?  I am TN, my tumor was approx. 3 cm as well.  I was treated in 2010.  I did AC/Cytoxan for 4 weeks, every other week, and then I did Taxol  for 4 weeks, every other week as well.  At the time I was getting treated, there were some women who were doing weekly Taxol.  Taxol can have neuropathy as side effects.  Some women suffer from severe neuropathy if they do weekly Taxol, therefore, every other week works better for them.  I honestly don't know whether doing it weekly has a better outcome which is a question you should definitely ask your Onco.  I never got sick once during my chemo, as I think that my Onc. were the best they come.  With Taxol cocktail, they mixed Zantac, Benadryl, Decadron, and Kytril in the cocktail.  I think that things like Zantac and Benadryl greatly helped me from getting sick.  I hope this info. helps.  Please don't be scared to ask questions, I know it is hard to think about questions when you are going through this, but write them down, everything that comes to mind.  If you forget, fax your questions to the doctor and get answers in writing.  Good Luck, young lady!  By the way, the treatment I had was called Dose Dense.

Hi ladies. I'm sure I have read posts on here about lymphoedema.  My arm which had the nodes removed has swollen up. Not too painful at the moment  but you can definitely see it is larger than my other arm and my medi bracelet and watch are tighter.  I have looked at the lymphoedema forum on here and didn't find much help.  Anyone got any suggestions.  I really don't want to wear that sleeve at this stage unless I have to. I also read that the cancer can be returning with this, anyone heard of that??. Annie

CS- First, don't wear your bracelet on that arm anymore. Anything that makes restriction isn't going to help with the swelling. I have LE on my right arm, hand and I have to wear a sleeve and glove. You just wear the sleeve in daytime. At first, I did not like wearing it but now, I don't feel good unless I wear it. You get used to it very fast. I know the LE thread was very useful for me. Some of the girls on that thread like "Binney" answered alot of my questions about it. I did go too an LE therapist for LE massages/drainage. It helped. Talk to your doctor about your arm and ask to see a LE PT. Good luck! 

And no, I never heard anything about cancer returning with LE. I really don't think it has nothing to do with cancer returning. Don't worry about that. It's just lymph build up because your nodes have been taking out. Nothing more...  

cocker---these ladies have given good advice.  Nothing but the sleeve--(dang it I know it sux) on that arm.  Do you also have a glove?  Get yourself to a therapist who understands LE and can teach you how to do the LE massage yourself.  If untreated it just gets worse for me.  Babs is right..you do get used to after just a couple of days so get that sleeve on you rebel!  I have never heard of such a thing that it means the cancer is back....lies and deceit!  I am having surgery on May 22 (a lymph node transfer) and am really hoping for some relief from it...hang in there.  Everything is better when we know how to manage it

Maggie

CNMylife,



I had the same regimen and my onc had me do 4 AC every two weeks and then 12 taxols, weekly for 12 weeks. She said research shows the weekly 12 taxol may offer benefit. She is very data -driven.

Cnmylife: To date, I don't think weekly and biweekly taxol have gone head to head in a research study. (Weekly has been shown to be more effective than triweekly.) There is some thought that because TN is high grade and aggressive, it may beneit from a more frequent, metronomic cycle - i.e. 12 weeks - which is why I chose that, but there is by no means any proof that I know of (yet) that there is in fact any benefit, and certainly many many women here have done biweekly with good outcomes. I think the two regimens are considered pretty standard and interchangeable. Certainly with weekly, the side effects are less, but it takes longer and involves more frequent visits. It would be worth probing with each doc why they recommend what they do.  

Ladies, I am going to pour my heart here as I need your attention please.  I am feeling those pre-cancer feelings again, which is weakness coming from the core of my being, shakiness of the legs, very weak arms and not being able to really breathe...... I used to describe to my doctors that I was getting paralyzed.  I really honestly don't know how else to describe this.  I had this at least a year before I got diagnosed with BC.  The neurologist had done every blood test possible, including all vitamins, toxic metals, I mean everything.  Then finally she had sent me for a sleep study.  The sleep study indicated a mild sleep apnea.  I got the treatment for sleep apnea, using the CPAP machine.  However, before using the CPAP machine, I had started using progesterone cream on my skin (as per Dr. Lee's book) to balance my hormones - The use of progesterone cream took my symptoms away and I was very happy and thrilled.  And soon thereafter this episode, I found the lump and I was diagnosed with BC.  So I have felt that maybe the use of this hormonal progesterone cream had caused my BC. Now I am not sure.

Well, lately those same pre-cancer symptoms have started again.  It happens even if I use the CPAP machine all night.  Which means that it is not related to how I sleep or not sleep.  That same weakness, that same paralysis feelings.  This time I am not using any hormonal cream, no way. 

I am suspecting could it possibly be my thyroid?  No one can say for sure whether those symptoms and my BC were connected.  Are these the symptoms of how hormones or cancer?

Should I get a petscan?  My thyroid doc has agreed to do a biopsy of my thyroid nodule, which is something which was not there on the petscan after my BC treatments, and developed about 5 months after all my rads finishedl.  I have a 21 mm nodule on my thyroid.  I understand from the doc. and many people, that only 5% have cancer of thyroid and thyroid cancers are easily treatable.  A very strange thing just happened. My thyroid doc. just called me, thinking he hadn't called me with my results, while he had already had this conversation with me before.  Since I have this new onset of symptoms, it was amazing that he called, that I could ask him for a biopsy this time.  He said to me "we've already had this conversation before, right?".  I said "yes, we have, but it is a miracle that you called, because now I could ask you for a biopsy, since I have lately become symtomatic".

I am not feeling well, ladies.  Should I really go ask for a petscan, as I know the doc will give it to me.  These feelings are really unbearable.  What am I dealing with here?  BC or Thyroid Cancer or nothing at all at this time, but my body getting prepared to annonce a recurrence?

lovely: sorry you are feeling so poorly. I know of several ladies here who have had thyroid issues coincident with or following BC. Whether there is a connection, I don't know, but it would seem worthwhile to check out the thyroid nodule further. 

Beyond that, your symptoms could be explained by many things. I know our first tendency is to think BC, but there is no reason to think that is so. PET scans deliver quite a whack of radiation, so in my view warrant some sober second thought before jumping to that. Have you had a full work-up by your GP? I'd be inclined to do that first and go from there... hope you get some answers.  

Lovely - So sorry you are in such a scarey place right now.  Hopefully you can get some helpful guidance soon.

I have some of your symptoms right now.  I had an ultrasound of neck about a month ago for some swollen glands on the right side.  Dr. couldn't find anything interesting on the right side, instead found a 2.3cm nodule on the left.  I had a biopsy and report said what it isn't, but not what it is.  They don't even know if it is on thyroid or parathyroid!  That has me on edge along with bladder/kidney symptoms, sudden hair loss, and neuropathy (more than during chemo).  I see my PCP Wednesday and see an endocrinologist at UCLA at the end of the month.

Holding you close in my heart today.  Jan

There's a thyroid or parathyroid discussion board here on BCO. 

My onc said taxol weekly is the best schedule for triple negatives because TN is often high grade and the weekly dose maximizes the chance that you catch proliferating cells during the growth phase.