Calling all TNs
Comments
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bak94 - I'm sorry they couldn't get it approved. To be honest, I have no idea how they got it approved for me. I am appreciative of my "team" because they must have had to pull some kind of strings! Sometimes if you are relentless they will approve it. There's still a possibility you could get it if you want to fight it!
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Is anyone in this group on Eribulin aka Halaven? I am SO TIRED and this was my off week! I think it might be working though, so I guess I need to suck it up and deal with it.
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Lori - how wonderful you've been able to get into so many trials, although I'm sure all the appointments and research has been exhausting. It sounds like your doctors are really behind you and doing all they can. I'll be thinking of you and sending many prayers your way as you embark on these new possible treatments. Stay strong!
Bak and LP - I am so sorry you're dealing with new lumps. I found a new lump right next to where my tumor was a couple months ago just after finishing AC and shortly after starting Carbo/Taxol. I had to wait a week for a scan and it was excruciating (lump was normal breast tissue thankfully). As busy as we try to stay and as positive as we try to be, it's hard to not panic and go to the what ifs. My heart goes out to you and I hope the time passes quickly until you can get in and get some answers. I will be praying for you both that the lumps are nothing. Hugs.
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Bak and LP, sending lot's of positive thoughts your way as you wait for results. We are here for you.
Hugs,
Kay
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Meadow - I'm not much of a dog person, but I do think I could take those puppies and love them all.
Bak - Hope your waiting is going by quickly.
In your pocket to those with new lumps.
And thanks to our sisters here who are doing trials. Our daughters and granddaughters will thank you, too.
I got a strange letter from Medicare yesterday about my prophylactic mastectomy in October 2011. Medicare has determined that it wasn't necessary for me to stay over night after surgery. So they won't pay the hospital for those 24 hours! And I won't be billed for it either! Yikes! I think this is way too strange. Have any of you heard of this before? Go figure......Jan
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Bak and LP, I also found a lump a few months after my lumpectomy. When I had a mammo/sono to check it, they found two more calcifications. I was so lucky! Just found out that all 3 were benign (fat necrosis). Will hope the same results for you!
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Purple I can understand your worries about chemo but I must be honest and say I'm glad I did it. I froze when it was first mentioned to me but it is doable and the time goes really quick. I hope you give it some more thought and decide to do it if it's necessary but only you can decide on that.
Slowloris like Bluebird I am worried about your spots. I do hope you get an answer about them soon and they turn out to be nothing.
Nettie I prefer not to have my CA153 markers done and told my doc's this. The anxiety of waiting so long for results gets to me every time and I want to move on without the constant worry of them. I've been told so many times that they are unreliable anyway that I think what is the point of that anxiety every time. If we are healthy and feeling fine we would know if something was amiss, wouldn't we?
Simple my doctor likes to do three monthly checks and that's ok with me. He is easy to talk to and if I have any concerns he puts them all into perspective for me.
Flimsical I am so sorry you didn't feel the support that you needed. Like the ladies said if we are totally TN, as I am, it's hard to answer questions some times. Not only that sometimes my grandchildren are here when I get home from work and they hogg my computer. But a very warm welcome to you. We are really supportive on here and I'm sure we can answer most of your concerns so please don't give up on us.
Stupidboob good to hear from you. In your pocket for good scan results.
Meadow yep like Jan I'm in for one of those gorgeous pups. They look just delightful.
BAK and LP praying that your lumps are nothing to worry about. Sending big hugs and in your pocket with you.
Allydp yep thos frecken what ifs. No matter how hard you try to move on those 'what if's of recurrence' come so frequently. Hopefully they will get further and further apart as we go on to live normal lives.
Well it's back to work for me after lunch. Prayers and hugs for all those going through treatment and those just struggling to get from one day to another.
Annie
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Annie - I agree that we don't need the stress while waiting for results of tumor markers. BUT, I felt fine when my lump was found. Didn't start to feel bad until treatment began. So now I think I need to be extra vigilant with my self exams. I have several lipomas on my arms, and some times they hurt which makes me nuts. Now that this is on my mind, I'll be spending time fretting. Jan
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Thanks everyone for all the kind words and support. I am also praying for everyone else dealing with this terrible disease. You have my love and support.
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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....
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LOL, Lori! How wonderful would a morning mimosa be?! Enjoy that yummy breakfast tomorrow. You definitely deserve it with such a long day ahead of you. I'll be sending many good thoughts your way.
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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
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Homehelp,
You're wife and daughter look like sisters! It's really sweet to see your daughter right there with her mom. I can't tell exactly how old she is but knowing young women (I was one and I teach middle/high school) you are so lucky to have her as a part of the team!
Also, thank you for the link!
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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.
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BanR,
I am amazed at how you addressed everyone, that is awesome! And I love your comment about this “journey”! That is a remarkable attitude to have through
all of this!Hello to everyone else!
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Yes BanR you are amazing and so so supportive to us all!
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LPBoston - sending thoughts your way for a good result from the tests for the lump. I know it's so scary to find one, and terrible to wait for results.
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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)!
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Not sure if you remember i had concerns about a node under my jaw and how my MO said it was unimpressive. Of course I don't trust him so went to see an ENT oncologist and he confirmed that everything looks good and nothing to worry about. So I feel much better.
I've been working on losing wieght and eating better. The eating better is going really well but the losing weight not so much. I despise exercising, I enjoy nothing about it but am trying. I really wonder if having the hysterectomy is making it harder to lose. I've never had this problem in the past. I also don't want to lose too much bc I will lose my new DIEP boobs that cost me a good 10k
Obviously, being in shape is a higher priority. Hope all my ladies are doing well and preparing for some summer fun.
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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!!!
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Ally - My heart is breaking for you. What devastating news. I have no experience or information for you, but I want you to know I'm holding you in my heart. Jan
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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!
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Ally, you have been through so much. And you are so young. I love how strong you are. I am not BRCA+ and know zero about it, I wish I did so I could help you. Are you saying in your post that carrying a baby is definitely out for you, or that it was advised against?
I hope those who can help will chime in here soon
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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
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Jan and Meadow - thank you so, so much for your kind words. I really appreciate them.
Meadow - if I choose to keep my uterus, I can still physically carry a baby. The BRCA specialist just advised against it, saying it would be a risk to me for new primary hormone fed cancers. I just don't think I could live with myself if I knowingly took that risk and I ended up developing another cancer and possibly left my child without a mother. We are thinking about pursuing a surrogate. We're open to adoption, but with the cancer dx, a lot of agencies won't work with us because of the risk of recurrence. Thanks again for your sweet reply.
SweetMaggie - welcome. This is an amazing group of supportive women. Congratulations on your surgery! And I echo what Meadow said. Chemo is totally do-able. It sounds like you have a great attitude which will really pull you through. Hope you enjoyed the vitamin D!
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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.
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rad square
Such nice comments
My daughter is a nurse and flew in for the second cycle
They both laughed at your comment!
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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...
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Ally, I'm so sorry to hear about your BRACA+ status and the impact it is having on not being able to carry a child. One blow after another.....cancer is hard on so many levels that people don't even think about. My heart goes out to you.
SweetMaggie, you are right that they recently changed the recommended treatment for many node positive people.....just a few months after I had an ALND! I don't know those new recommendations apply to TNBC or just to other forms of BC where there are targeted therapies available. I was upset when I heard about the change in recommendations since my MO and BS didn't really give me any choice in the matter, but I think you have a good point.....it would have been a hard decision to make and I may have decided to go with the ALND anyway. Good luck with you chemo. I can't say that it goes by fast, but I can say that for most people it is very doable with all the drugs for SE's these days. I totally agree with Sloloris about the naps. I took one (or more) almost every day while on chemo.
Jen, I'm glad your jaw issue turned out okay and you feel comfortable with your doctors' opinions.
BanR, I love what you said about no matter what happens your life is not wasted. That is so true for all of us. Thank you for putting it into words so beautifully.
I went bra shopping today for the first time since my LX (and getting 30 year old implants removed). I had been wearing my old 36c bras for the last 5 months knowing that they didn't fit. I'm now officially a 36a....oh well. I'll learn to live it, but it was kind of sad for me shopping. I ended up getting a padded bra that I think looks pretty natural. The lady at the store was very nice. Bra shopping for me was like bathing suit shopping is for many women. The sales lady made it much easier for me and for that I am grateful. I know my bra shopping issue is a MINOR problem in the grand scheme of things.
Hugs to all,
Kay
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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!
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