Calling all TNs

Flimsical, I was on Halaven right before my clinical trial. As with every other chemo I tried, fatigue was a side effect. It also made my blood counts go down, esp platelets . I had to get shots of neupogen and neulasta. I believe it slowed down my progression, but I still was getting progression none the less. Thus the decision to go on the trial.

My philosophy on every chemo was "if I feel tired, take a nap".  Some days I took 2-3 naps, other days 1 was sufficient. Don't expect your body to be like it was before bc. although chemo is keeping us alive, it is also destroying some of our good cells. Consider nap time as part of your treatment. It helps with the healing.

I also had lumps come up after surgery that were fat necrosis. My recurrence nodules were different, and somehow I knew immediately it had returned.  If you are just having doubts and the what ifs, my guess is that its probably benign, because somehow (atleast with me) I KNEW otherwise with the nodules. Intuition and just knowing my body I guess. I'm praying for you both that it's nothing to worry about.

Tomorrow will be another 9 hr day of blood draws, but this time they will feed me a high fat breakfast to see how the drug is affected by what we eat. They actually called me today to ask if I liked bacon!! Like, who doesn't like bacon!!! I don't know what else they will give me, maybe bagel and cream cheese or whole milk cottage cheese or yogurt? I wonder if there will be a mimosa or bloody mary waiting for me....

hey ..

I am logging in after so many days and so happy to see all of you writing and i see some new friends too on this forum.

first of all congrats to navymom, tifj, titan, mitymuffin, dormac and everybody who have completed milestone anniversaries.

island mama: you are exactly my age. i can completely understand what this diagnosis means when it comes at 35. Pls be in touch for any support.

nettie: post chemo and rads even i have been having odd pains but MO asked to ignore it if it is not severe. And thanks for the lovely pics!

i read that what distinguishes a bone pain from a muscle pain is the intensity. 

ally: talking of stats..20 to 30 percent of tnbc women will have a recurrence. But tnbc as a separate disease got identified only in 2006. So the stats are based on less data. I am sure 10 years down the line the database will be larger. And it was the right decision to go for rads. I have to spread and no LVI but still 33 rads were recommended for me. Its the biology of TNBC which makes it so scary.

slv: Its surprising that even after achieving a PCR, you were given 70 percent. Mo says that if PCR is achieved survival is at least 92 percent. Like you, even my lump was slightly er pr positive. Hormone therapy was not recommended.

looking forward: I am so happy that you have reached the stage where you forget that you ever had cancer!! I love your positive outlook. Hope you arthritis issue is under control.

cocker: thanks for your quotes and pics. How have you been. I see even you are getting close to the 4-5 yr mark.

simple: follow up once every 6 months is good news. That means the docs do have a very positive outlook in your case. I remember you had micromets in one of your nodes post neo chemo which went away after radiation.

Ufandi: Maybe in your case simplelife is the right person to reach out too.

stupidboo: thanks for your links!

mom: thanks for the link on immunotherapy. It was a useful read.

Bak: even my thyroid started malfunctioning post chemo and rads. My next bloodwork is after a month for TSH.

meadow: i like the pic you have put up!

slowloris: you mentioned your tp53 gene and rb1 gene are mutated. I asked my onc for gene testing and he said in case your tp53 gene has a harmful mutation then there should be other members in your family having had various other kinds of cancer. When i said no, he didnt recommend tp53 testing though i feel i should go for it. Does it change treatments or followups in anyway?

bak and lp: do keep us posted on your reports

jan69: completely agree with you and thank everybody who are participating in clinical trials. 

flimsical: my love and warm wishes to you dear as you fight out stage 4.

Fighter: so good to hear you are in remission. Love your fighting spirit!!

Well......

Throughout this journey i have realised this one thing..If i survive i will be an inspiration to many. If i die then many more women associated with me will get more alert and aware. Ultimately nothing goes to waste.

Currently enjoying every minute with my lovely 6 year old daughter!! 

Wishing you all good health and a long life! 

Love

Banr,

I'm going to chime in about the gene testing in case alkaloids doesn't get a chance. If you have a gene mutation, it doesn't radically change your breast cancer treatment. The only real difference is they would recommend bmx even if you had been considering umx or lumpectomy.

ON THE OTHER HAND, the increased risk for other cancers leads to ADDITIONAL precautions. I will be having my ovaries removed once all my chemo and reconstruction is done. Ovarian cancer is the next big worry.

Yes BanR you are amazing and so so supportive to us all!

BanR - I was going to say the same thing - you're six year is old very lucky to have a mom like you!

NatL12 - thank you it is scary - my anxiety level has sky rocketed over the past couple of days but I am hoping all the worrying is for nothing - I'll take that!

I am enjoying this beautiful weather in Boston - finally!!  I live for the summer (and my husband and kids)!

I'm curious if anyone on this thread who is BRCA+ has been told pregnancy would be a risk to them despite being TN? As I've mentioned here before, my husband and I had undergone many infertility treatments prior to my dx and had decided to build our family through embryo adoption. Although I will be having my tubes and ovaries removed, we had hoped to leave my uterus to still be able to carry a child. However, we got some devastating news this week. After meeting with a BRCA specialist, we were told that despite being TN, carrying the BRCA gene means that I am at risk for other primary cancers that could be hormone positive. The hormones created throughout pregnancy could be a risk. I'm having a BMX, but they can only get 95-98% of breast tissue, so the risk would lie in that remaining tissue. It's a small risk, but I don't think I can put myself in that position. I know this is a very specific situation, but I've noticed there's quite a few of us here who carry the gene, so I thought I'd throw it out there and see if you've addressed pregnancy with your doctors at any point. Grieving the loss of a biological child was excruciating. Grieving cancer has been more excruciating. Now realizing that I will never carry a child is just one more blow. Cancer sucks!!!

Hi All, I would love to join this sign up list.  A little bit about me....diagnosed May 2014 (after a 2 month series of every type of biopsy there is.)  Started at my local doctor, got another opinion in Annapolis (they were great by the way), but ended up at Johns Hopkins, which I am very happy with, although it's a 2 hour drive from my home.  My diagnosis, IDC, (obviously TN), tumor was 3.4 cm (although I could never feel it nor could my doctors...), node free, so no radiation.  Was found during annual mammo and I had some weird pain so they did an US too, then an MRI.  Funny, they all said different things (hence my 2nd and 3rd opinions). Have my chemo consult on July 18 and gene testing appointment in August (no family history that I know of except a cousin on my Moms side, but no nothing about my father's side.) I had a single, nipple sparing mastectomy.  There just wasn't enough time to do the gene testing before surgery, since I had been in the diagnostic phase for 3 months and the tumor was  aggressive. So I went with my doctor's recommendation (which wasn't a double mastectomy.)  My anxieties are of course chemo side effects and of course scared to death of recurrence.  I plan to exercise, eat low fat, (which I moderately do now) and whatever else I can read about that will help me stay cancer free (within reason....)  My biggest challenge has been alcohol, I was a 4 glasses of wine a night person.  Now I'm down to a half glass.  Right now my surgery site is good, but I still have in my drain (3 weeks now!) which should be out this Friday.  But the TE is tight, he filled it half way during surgery and I am happy with the results.  He said if I lost my nipple, it would be the first one ever for him.  Glad I didn't disappoint!  I'm glad this forum is here and would like to be a helpful participant, as well as learn from others.  Well, I'm out to get 15 minutes of vitamin D on my deck.  Thanks to all who are here to support each other during one damn pain in the ..... experience. BTW, Hopkins has a newer take on lymph nodes, and if they are cancerous, to radiate instead of removing.  I know there is controversy out there on that subject, glad I didn't have to make the decision.  But I would have taken my doctor's recommendation and radiated vs remove. Take care!

Welcome SweetMaggie, nice to meet you. You will find this group very supportive, and we welcome your input. Congrats on a successfull surgery and happy nipple! Chemo is very do-able, the newer anti nausea drugs have made a huge difference. Stay strong fight hard.   Meadow

Ally,

I'm a BRCA gal! My genetic counselor told me the ovaries had to go in the next few years (I'm 36). I did a cycle of embryo preservation before starting chemo b/c ovaries or not I figured the chemo would kill my eggs. It turns out they only got 1 viable egg anyway so it looks like a natural pregnancy would've been an issue cancer or not.

No one has mentioned to me that it would be recommended to remove my uterus or that pregnancy would put me at risk for other cancers. I was told that I am at a higher risk for other cancers period. The only one that poses a high enough risk for them to recommend removal if more body parts was the ovarian cancer.

Ok alli,

I found my little booklet on "information for carriers of brca1 and brca2" given to me by my genetic counselor Jill Stopher who is at the Basser Research Center for BRCA at U Penn. I have no option but to 're-type it....so I hope it helps! From p. 17 under the prophylactic oophorectomy in pre-menopausal women we have...

"Some women choose to have their uterus removed at the same time their ovaries are removed. There are both advantages and disadvantages to this approach. Tamoxifen is a medication that some BRCA carriers elect to take in order to reduce their risk of breast cancer. It is associated with a slightly increased  of uterine cancer. Early studies suggested an increased risk of  uterine cancer associated with brca1/2 mutations, but more recent studies have only seen this in women who take Tamoxifen. A second risk associated with hysterectomy is that the type of hormone replacement therapy for premenopausal women who have their ovaries removed depends on wether a woman till has her uterus. Hormone replacement pay can be simplified if no uterus is present. Finally, there is a theoretical risk of developing cancer where the fallopian tube was connected to the uterus. These are reasons some women consider hysterectomy. However, the recovery time for surgery involving the removal of both the uterus and ovaries is longer than for surgery to remove only the ovaries. The only "required" surgery is the removal of the ovaries and fallopian tubes."

Ok...now my fingers hurt...

Homehelp...

Gotta have a sense of humor about it! After sticking myself with all those needles, I was hoping for at least 2! Lol 

My mother told me that one little egg might one day grow up and cure cancer! We shall see!

Did you all hear Joan Lunden has been diagnosed withan "early stage" "aggressive" bc? Not sure whether her2 or triple negative or something else. She has started chemo. I tweeted her about the boards.

finally got the mri scheduled on the little lump in between the recon girls.....one doc says scar tissue other says biopsy so Onc says lets get more pics....ugh...will keep you posted

Maggie

I had a full hysterectomy laproscopically and the recovery was 2-3 days.  I'm not that lucky that cancer wouldn't come back in the uterus or the small part of the fallopian tube that says so I went all the way.  I sleep well now.

Yeah Luah!!! Wonderful news for you!!!

Congrats!!!!