32 year old wife ER+/PR-/HER-2+++ (share experiences pls!)
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Pathology confirmed liver lesion is metastatic breast. Continuing treatment as planned and will monitor this closely.
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I have been following your story these past few weeks and I am so sorry to hear that the liver lesion is a met. My thoughts are with you, your wife, and your entire family. If your wife has not already joined this website I would encourage her to do so. Writing here has really helped me and especially being a part of a group going through chemo with me has made the experience a little less scary. Hopefully the chemo will do its job and shrink that liver met away to nothing!
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For what it's worth....I am an eight year survivor of IDC with the same pathology as your wife. I was diagnosed prior to the drug Herceptin (it was still in clinical trial for Stage 1 IDC), therefore I was not able to receive it. I had three months of Adriamycin and Cytoxan and 30 rads....that's it! I had my ovaries out and took Arimidex for 5 years and I am currently in a clinical trial taking Femara. I guess what I am trying to say is that your wife has a VERY good prognosis....do the Herceptin, it is a great insurance policy and you never want to look back and regret having not done all you could....remember the first shot is your best shot!! My 71 year old aunt just finished chemo and chose to take the herceptin and did great....your wife is young and will do just fine!
Good luck!
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I was diagnosed January 13, 2010, with HER2 + that had spread to my lymph, liver, and a vertebres. I should mention I had gone to an accute care clinic because I thought I had a bad case of the flu...lol. In less than a week I was in the hospital getting what I call emergency chemotherapy. I was given taxatere, carboplatin, herceptrine, and something to help my bones. I was on this regimen every three weeks for about 6 months. Now I am on just the herceptrine and the one for the bones, again every 3 weeks. My last CT scan showed no (noticable=does not show on the CT scan) cancer in my liver, lymph, and bone. Herceptrine has been very effective in keeping the cancer reduced to levels that keep me living a life that is getting better everyday. The taxatere and carboplatin was neccessary to reduce the big tumor in my neck and the multiple lesions in my liver. My liver is actually healing itself now according to the CT scan. This cancer is very agressive but treatable. Every individual is different so every treatment is different... but certain things are essential to recovery in ways that mere words can't express... a positive attitude...the support of your family and friends...and a strong spiritual relationship in what ever way is meaningful to your family... and a sense of humor is really good!. I just really want to encourage you and your wife to continue to educate yourselves, I know personally, that what you learn can sometimes be scary but again keep in mind this disease is treatable! My thoughts and prayers are with your wife and your family.
CMC
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There is another lovely young lady who I know on these boards (probably one of many) whose mets on the liver have totally disappeared after treatment with herceptin. My thoughts are with you both.
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Hi there-
Im 35 and have two young girls, 22 months and 3 and half yr old. Its been a dreaded few months for me, since i was diagnosed. I laugh at it at times, because I dont think its happening to me. Then the odd times I cry alone, and ask what the frig did I do for me to get all this. Ive worked so hard in the last 5 yrs that its time for me to relax and enjoy my life now, but ive got this happening to me.
I just found out yesterday that im PR/ER positive and HER-2 positive. I just feel crappy knowing that ive got to do Hep for one yr, so that just put a downer on me. The fact that its taking so long to see the oncologist is pissing me off too.
They wont do reconstruction on me until all meds are done. I feel really incomplete with a masectomy. Just where ever i go there are hurdles. My biggest fear is that I wont be able to deal/play with my girls because of the CHEMO.
with this HEP drug, can I travel, can I lead a normal life, or is it going to affect me the same way as CHEMO. Im just freaked out with side effects.
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I don't really belong here because of my age but I would like to say to redninrah I'm also triple+ and did Herceptin for 1 year every week.
No Herceptin doesn't make you sick you can have it and go shopping after.
It doesn't effect the hair growth.
My oncology nurse told me once its a maintenance drug.
Good Luck to you.
♥
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Thanks Seyla- you have reassured me!
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redninrah,
My 3rd baby was just 6 months old when I was diagnosed at age 38. She had just gotten out of being in the hospital for 18 days for failure to thrive and we didn't really know what was wrong, whether it was a physical problem (she had a poor suck) or a chromosomal anomaly. No one knew. I think they ran every test in the books and still no answer. She ended up with a g-tube (feeding tube) and thankfully, she is fine and eating normally now, but that part of our life was H*LL!!! Right after she got out of the hospital, I found my lump while trying to breastfeed her and well, the rest is obvious-- HER2+ just like you.
I went through all the same emotions as you, so I know EXACTLY how you're feeling and what you're scared of. I won't lie and say that chemo was a walk in the park, but it was doable. Especially when you have young kids, you really don't have time to fixate on being sick, I guess. There were many times that I felt like crap, but the baby still needed her poopy diaper changed, etc. For all the crappy times, though, most of the time, I just felt tired and a bit under the weather, but not enough to really change my daily routine all that much. I walked the kids to school, went shopping, etc. I know everyone reacts differently, but I still think part of the reason I didn't get that sick is because I didn't have the option to. Herceptin for the year isn't much of an inconvenience at all. Sometimes I feel a bit more tired, but really, life is pretty near-normal on just the herceptin. I have just 2 more herceptins left!
It is a little odd that you haven't gotten to see an onc yet. My timeline was much faster. Diagnosed mid-July last year, surgery end of july, started chemo exactly 4 weeks after the surgery. When is your appt?
There are lots of us on these boards who are under 40 with young kids. From researching, I've discovered that after pregnancy, women have a window of time that they are more prone to getting premenopausal breast cancer because of all the changes and growth of the breasts due to all the hormonal changes in pregnancy and lactation. Why no one tells us this, I don't know. I guess because even with this increased chance, it is still uncommon. We're just the lucky ones. LOL. Another odd thing I found is that the same factors that tend to protect postmenopausal women from getting bc (mostly staying within normal weight) are the same factors that tend to INCREASE the risk of premenopausal bc. I'm really petite and thin (5'2" and just about 100 lbs.) so I guess I fit into it. I've beaten myself up with the same thoughts--what did I do wrong? But, I'm slowly starting to accept that maybe I didn't do anything wrong afterall. In most people, cancer is from a fluke mutation in a teeny tiny part of a single gene. Why our bodies didn't repair itself, I don't know. If they knew, I guess we would have a cure.
Gee, I never write this much. I guess I just got a little passionate-LOL!
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Thanks for the reply- there u go- im going to focus on my kids all the time and not even give the chemo a thought! perhaps thats what will help me. You know, you work hard in life and then when you think, ok time to treat yourself to vacation or whatever, you get this. So for me I had 3 vacations abroad this yr after 8yrs of working to establish myself, having babies, and now, the vacations are all postponed.
On top of it, I hate the surgery!!! Just having one breast. I had to go to this store and buy masectomy bra's- not attractive. Then stuffing a foamy prosthesis. Then asking my husband if I look symmetrical each time I go out. Bloody hell!!!!!!
I was told that I was going to get a phone call on monday regarding my onc appt and when it is. Tpically in Ottawa its 6-8 weeks after surgery. Im now on my 4th week post op. My surgeon told me that no one will do reconstruction until at least a yr. just flipping gt!!
I havent told many ppl other than siblings and immediate family, just dont want ppl to call me up and treat me like ive got an incurable disease.
I havent got disability insurance or critical insurance, im self employed, so time off for me is going to be financially stressful. But will be able to cope.
Do you know if chemo makes u gain weight, ive spent the whole of last yr and a bit after havign my 2nd child dedicated to the gym. While I did well I still ahve a little to go more, please someone tell me that these meds are not going to make me gain weight!!!
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May I suggest we move this conversation to another thread re: questions for chemo etc. I do not want to be disrespectful to SunDiego who started this thread about wife who is dealing with start of treatment for a Stage 4 DX. (and questions re; The Liver mets)
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I apologise to swift away from the main topic..............
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I, too, apologize. I guess it's easy to get wrapped up with what is being said in all the comments and not even realize that it was originally a different topic altogether! Thanks mmm5 for keeping us on topic! I certainly did not mean to stray away.
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Sorry..
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Thanks all for respecting the thread, and thanks for keeping the inputs flowing for our situation.
On a different note, Whole Foods has become our new grocery store, my wife has decided to only eat organic now, and ironically she is healthier than ever before (except of course that darned cancer).
Question.. she started TCH on Aug 9, and got a regular period today (she is 32). Is it normal to still get a period for pre-menopausal women after chemo starts? If so, perhaps the chemo is cumulative and it may stop? The only concern is for the ER+, don't want to feed the cancer.
Thank you.
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From what I have been reading even for peri-menapausal (like myself) it might not stop till after your 1st or 2nd treament. Sometimes it doesn't stop (although seems rare).
Younger women like your wife may even get her period back several years later. There are several ways they deal with this so I would be sure to discuss this with your oncologist.
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Sun,
I was 32 while in treatment and only missed two periods during chemo and they didn't stop until after the 2nd or 3rd chemo if I remember correctly. Came back like clockwork before chemo was even done. But during and after chemo I had no PMS, no cramps and shorter periods - nothing like before. I was also taking supplements recommended by my ND (Naturopathic Doc) to start metabolizing any excess estrogen so that probably had something to do with it as well.
I ate organic as much as possible before I got diagnosed, but I really stepped it up once I found my lump and I was feeling so much better and healthier. I really think that and the supplements was what got me through chemo w/o a lot of the side effects other people were talking about. So good for her!! Whatever she knows is working for her, keep it up!
Praying for you both and thinking of you lots!
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SunDiego
I was totally premenopausal at dx age 42 and periods stopped completely after 2 treatments. 6 months post chemo my estrogen levels started climbing again so they began giving me Zoladex/Lupron shots which shut down the ovaries. Your wife can have a simple estrogen test,one day turn around time and that will tell you where she is. I would also remind the Onc about it and see if a zoladex shot would be appropriate. As your wife is triple positive and she is getting the chemo my thought would be they would consider dealing with the estrogen at same time. (although many don't deal with that piece until after chemo)
Your wife's situation is a bit different as she is very young (presumably with a lot of estrogen) and she is dealing with the liver mets from get go. That said it seems as if they would want to look at all pieces of the puzzle initially vs. waiting for chemo to be over.
There are some great threads on this board re: organic eating, alkaline approach etc. I think all of these things are worth looking into as well as more conventional lines of treatment which are very encouraging for Her2 gals. Have you thought about contacting UCLA and getting your wife into a vaccine trial or TDM1 treatments. You may be able to contact Dr. Slamon himself as he has had some success treating stage 4 Her2 pts in the long term.
Good Luck
i continue to keep your wife in my prayers daily as well as your family.
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twinmom
Question for you, are you taking any hormone therapy (tamos) or are you just taking the natural supplements (I am assuming DIM, or close alternative)
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mmm5, I tried Tam and couldn't handle the side effects. I'm taking lots of things to metabolize estrogen and things that act as natural AI's - DIM, Myomin, Calcium D-Glucarate, Resveratrol, Melatonin to mention a few. And my thyroid and adrenals were a mess before I was diagnosed which didn't help, so I've got them working properly now.
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I am 33 years old and was diagnosed On Dec 28th 2009 at the age of 32 with HER2+ IDCU stage 3 it spread to the lymphnodes. I am a mother of a 4yr old and a SAHM.
I underwent chemo and herceptin first then a lumpectomy and now am doing 8 weeks of radiation 5 days a week and herceptin every 3 weeks for 8 months. Herceptin side effects for me are brittle nails, and I am one of the rare that am having some heart issues but that is being minimized by steroids and benedryl being administered as a premedication to the herceptin, I did not have heart issues until after I was finished with chemo and most people don't have this problem. Herceptin is a must with Her2+. Chemo wasn't as bad as I had thought it would be. I was constipated for 3 days after chemo and then diahrea for a week and that took alot out of me. My taste buds were messed up but my husband got a cook book called "The Cancer Fighting Kitchen" and the recipes were really good and food didn't taste bad when we used the cookbook recipes.
Family flew in and friends helped out for the first week after chemo since I stayed in bed tired for most of the week. Chemical menopause was no fun, my last chemo was the end of June and I am still in menopause.
My son was a trooper and I didn't hide anything from him, he had a right to know why mommy wouldn't be herself for awhile. Some friends got me the Chicken Soup for the Soul for Breast Cancer Survivors book and there is a story in there that I used to help my son understand what was happening to mommy.
I told my son that I had bad stuff in my body called cancer and that I needed the help of super heros to help my get rid of it. The doctor had to give me superhero medicine and that the superheros were going to fight the cancer and that they were going to fight so hard that they will blow the hair right off my head. A huge clump of hair came out one morning so I woke my husband to shave my head so that my son wouldn't have to see it. My son walked in half way through the shaving and just smiled at me. He said the "The superheros are winning mommy" and then told me I looked good with no hair.
I hope that this helps you and I pary for a complete recovery for your wife.
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I'm so sorry you and your wife are having to go through this! I am so glad she has started treatment though. From the reading I have done, it seems like the top cancer centers are now recommending chemo before surgery. I was diagnosed in March of this year with Stage IIIa HER2+ breast cancer. My primary tumor was 4cm, and the PET/CT lit up showing tumor filled lymph nodes (at least 8-9) under my arm, 2 mammory nodes under my breast bone (inoperable) and 1 node in my neck (also inoperable). Before knowing about the mammory and neck nodes, I was scheduled to have a bilateral mx, but upon that finding we switched to chemo first. I did 4 treatments of A/C (every 2 weeks) and then 4 treatments of Taxotere (every 3 weeks). When I started Taxotere, I also started Herceptin every week. I have had no side effects from the Herceptin at all, so i wouldn't worry about that as long as your wife's heart is in good shape. I am 39, and my first MUGA scan showed heart function at 72%, which is really good. 3 months later and a month from finishing all chemo, my heart funtion was still at 72%. My heart is handling the drugs really well. Unfortunately the A/C treatments were beyond horrible for me since the anti-nausea drugs didn't work for me. Nausea was, by far, the worst part. Being thrown into perimenopause was also bad. I became very depressed, and my anxiety level was so bad it was causing extra nausea. I've been on Lexapro for months, and within the first month on that my depression was alot better. I highly recommend your wife start taking an anti-depressant/anti-anxiety medication during this time. I also highly recommend her finding a support group locally. Online is great (I just found this site through a woman I met at the chemo lab), but actually sitting in a room with other women going through the same thing has really helped me. We even have a support group in Norcal that is for all cancer patients and their caretakers. My husband hasn't been able to get away from work to go with me yet (he has been with me to every chemo treatment and every Dr. appt, so he can't take more time off right now), but he plans to once I get through surgery.
I just had a repeat PET/CT last week after finishing my last chemo treatment, and it showed NO cancer anywhere except possibly in the breast with the primary tumor. They can't be sure if it's invasive cancer, DCIS (I have both) or just scar tissue. I have my surgery in 2 weeks, so we'll know for sure then. I am so happy that we did the chemo first because I wouldn't know if the chemo worked or not. My original tumor is so broken up it's not identifiable. And for them to tell me the cancer in all of my nodes is GONE was amazing. I also have a friend of a friend who was diagnosed with Stage IV HER2+ BC at age 30. She had mets on her liver, lungs and 7 brain mets. She also had mets in almost all of her bones. They gave her 2 years to live. She passed that mark about the time I was diagnosed, and after doing chemo and Herceptin (she had to do Gamma Knife for the brain mets since Herceptin does not break the blood brain barrier), she is no w cancer free! So even though it seems like your wife's diagnosis is grim, it's still possible to come out of this even if it has spread further than the liver. Hearing stories like hers really helped me put it in perspective.
I also have 2 young kids (6 and 3), so I know how it feels to even think about not being here to see them grow up. Just know that with Herceptin and chemo, this type of cancer is certainly not a death sentence. In fact, my oncologist told me when I first met with her: "this is curable". That was huge for me.
Good luck!
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Wife's second TCH was Monday... Tumor Marker CA 15-3 was redone and dropped from 1003 to ~550 (still seems awefully high, but Onc was thrilled). Full healthy thick head of hair still (those on TCH, what is average time before hair loss). Otherwise no real SEs. Started on Lupron & Zometa Monday as well.
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I did TCH and lost my hair on day 19
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I did TCH every three weeks and didn't lose my hair until the second week of the second treatment. Even then it didn't all fall out, but I cut it super short and never really lost all of it, kept a tiny bit on top. I was worried about it coming back but had my last chemo April 26 and I have a full, healthy head of hair now, it's really short but it has grown so much I've even trimmed it to give it a little more style. The color isn't quite the same but I didn't care if it came back purple, just so it came back! The TCH isn't fun but totally doable. And I can't really tell any side effects from the herceptin alone (will do this till the end of the year). I'm so sorry you are going through this and I pray that your wife will have faith, hope and complete healing. I know she must feel very blessed to have a husband who is so caring and involved in her treatment. Hugs to your whole family, I bet those little ones help keep things feeling real and normal!
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Redninrah,
I just read your post so I apologize for this late response. I was diagnosed 2 years ago at the age of 42 with stage 3, HER2+ breast cancer. Lumpectomy was not enough so I was advised to do a partial mastectomy. I chose to do a bi-lateral one...I joke that I wanted a match set:) I started with a mastectomy/partial reconstruction, I did 20 weeks of chemo, 6 weeks of radiation and a year of Herceptin. I'm a bit surprised to read so many alarming comments about Herceptin. I thank God every day that it's available and to all the women before me who went through the clinical trials to prove its effectiveness. I had ZERO side effects from the chemo, radiation or Herceptin. I never had a bad day with chemo. I would run home from 2 1/2 hours of chemo and go walk 3 miles. Granted, when I was told of the length of time I'd have to be on Herceptin, I was not thrilled. But when I realized what that drug had to offer me in terms of recurrence and survival, I'd stay on it for as long as necessary. I highly recommend a book that may give you comfort regarding Herceptin. It's called HER2; The Making of Herceptin, by Robert Bazell. It's an awesome book, easy to read and understand and very enlightening.Harry Conick Jr. also starred in a movie about this drug and the Dr. who developed it. You can find it on YouTube. You can lead an extremely normal life. I certainly didn't think that when I was diagnosed. I remember telling my kids that they'd have to do all of the chores for months as I was expecting to be out of commission with chemo, surgeries and radiation. I wasn't. I remember a piece of advice my surgeon gave me that I never forget...EXERCISE. No matter what, she told me to exercise 7 days a week whether I wanted to or not. I did. I even walked with my drainage tubes. Fast forward 2 years later to now and I am thriving. If someone would have told me when I was diagnosed that I would have come through it the way I did, I never would have believed it. Your diagnosis is not a death sentence. You will come through it. You have an army of women who will be there for you whenever you need us. I wish you the best.
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Just wanted to give a quick update. My wife did a follow up PET/CT yesterday. First TCH was done on Aug 9, a second on Aug 30, and third will be on Monday. The numbers related to the isolated liver mass....
First PET/CT Aug 5
SUV 10.8
Size 3.7 x 3.2
Second PET/CT Sep 15
SUV 5.0
Size 2.3 x 2.0We're thrilled by this improvement. I'm assuming this is "normal" to see such shinkage after chemo does its job (dropping by just over 50%). Another CA 15-3 was drawn yesterday, so results will be in soon.. (started at 1003, dropped to 527 as of Aug 30)
On another note, hair finally gave out, 35 days after first chemo, so fully shaved yesterday and amazing real human hair wig was already ready and put on. It looks better than her old real hair! (for those in the Southern California area: we highly recommend Piny of Beverly Hills. Google him).
Thanks all for the continued support, kind words of encouragement, and resources.
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Sundiego! that is fantastic! Hope you get a chance to celebrate!
Great to hear about how nice the wig looks. I got more compliments on my wig than I ever got on my own hair too. Nobody could believe it was a wig. I have to say, getting ready in the AM was very quick!
V
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sun diego
Fantastic news for your wife, may she be one of the fortunate where Herceptin keeps her NED indefinitely. There are many on here that have been on it for years. I keep her in my thoughts often. I hope she is holding up well.
God Bless both of you!
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At Infusion center now, got results of third CA 15-3. Down to 334 (down from 1003 -> 534 -> 334).
Also, they did a second CA 27-29, dropped from 637 to 234.
Headed in the right direction....
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