Starting Chemo September 2015; join us!
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So now I"m going to go back and look at my path report on the Her2. I wish I had looked into more trials.
I was so tired after all the treatment. But my cancer is the exception to the exception to the exception to the rule about HR+ cancer. I just felt like I couldn't do any more... I couldn't travel back and forth while having my 3 young children at home. I was pushing the limits of paid leave at work (took 6 months off). Flights would have been a strain on us, financially.There is so much looking backwards in cancer treatment with hindsight always being 20/20.
I had a friend that had carboplatin for lung cancer many, many years ago. She was 38 and a non-smoker. She's cancer free today.
I'm hoping you find just the right solution, countryfrench! There is such a need for personalized cancer medicine. All ER+ cancer is NOT the same! All triple negative cancer is NOT the same! 0 -
Breaking news released today.
The NeuVax Phase 3 clinical trial (PRESENT) has been stopped (cancelled). NeuVax was unable to prevent recurrence in this clinical trial.
The Independent Data Monitoring Committee (IDMC) recommended that the PRESENT clinical trial be stopped due to futility.
I'm not sure how this affects the other three trials, but it might be wise to check in with your Oncologist.Source: Galena website - https://globenewswire.com/news-release/2016/06/29/852251/0/en/Galena-Biopharma-Discontinues-NeuVax-nelipepimut-S-Phase-3-PRESENT-Interim-Analysis-based-on-Independent-Data-Monitoring-Committee-Recommendation.html
This is a monumental disappointment.Here are the four NeuVax vaccine clinical trials:
1.Prevention of Recurrence in Early-Stage, Node-Positive patients with Low to Intermediate HER2 Expressions With NeuVax Treatment (PRESENT trial)
Estimated Enrollment: 700
Study Start Date: November 2011
Estimated Study Completion Date: April 2025
Estimated Primary Completion Date: April 2018 (Final data collection date for primary outcome measure)
UPDATE - June 29, 2016: Trial has been cancelled. NeuVax was unable to prevent recurrence in this clinical trial.
Source: Galena website - https://globenewswire.com/news-release/2016/06/29/852251/0/en/Galena-Biopharma-Discontinues-NeuVax-nelipepimut-S-Phase-3-PRESENT-Interim-Analysis-based-on-Independent-Data-Monitoring-Committee-Recommendation.html
2. Phase II Trial of Combination Immunotherapy with Nelipepimut-S + GM-CSF (NeuVax) and Herceptin in High-risk HER2+ Patients
Estimated Enrollment: 100
Study Start Date: October 2014
Estimated Study Completion Date: October 2019
Estimated Primary Completion Date: October 2016 (Final data collection date for primary outcome measure)
3. Combination Immunotherapy with Herceptin and the HER2 Vaccine E75 in Low and Intermediate HER2-expressing Patients to Prevent Recurrence
Estimated Enrollment: 300
Study Start Date: January 2013
Estimated Study Completion Date: December 2018
Estimated Primary Completion Date: December 2016 (Final data collection date for primary outcome measure)* Target population: Node-positive (or Node-negative, if both ER- and PR-) patients with HER2 1+ and 2+ expressing tumors who are disease-free after standard of care therapy
4. Phase II Trial of Nelipepimut-S Peptide Vaccine in women with DCIS (VADIS Trial)
Estimated Enrollment: 108
Study Start Date: March 2016
Estimated Primary Completion Date: September 2019 (Final data collection date for primary outcome measure)0 -
Thanks for that update. That is such disappointing news for the participants.
I think it speaks to how cancer is really SO many different diseases and what looks promising for other cancers may not work for breast cancer, which in and of itself is probably 100 different cancers. But I had high hopes for those trials.tiger, I had 2 path reports both with second opinions. DCIS was ER (98)+ PR (34)+ Her2- (+1). IDC was ER(98)+ PR (91)+ Her2- (0). Not sure what to make of that.
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hello, I am also a 9/15 chemo. Nice to meet you ladies. I read the boards often, but I do not post much
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Good Morning to all, Hope everyone had a good 4th!!
I joined a Relay for Life Team in the Fall, and our team of 12 raised 8930.00. I leave in a very rural ( very small population) and as a whole we raised close to 98,984.00!!!! I've gone to these events before but never seen/experienced it like this time..........To realize how many people cancer has touched in such a small area just hit me pretty hard!!! When it got dark and all the luminaria bags were lite around the football field and we did the last lap, it broke me!!!! WE HAVE TO FIND A CURE !!!
This disease is everywhere and affects so many people of all ages and I really wish there was something I could do to help...I am sure each person here feels the same way i do .......
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I'm feeling the same burdens for others. A good friend was just diagnosed at 47. She has a 10 year old son.
I just had dinner with my two time survivor friend, now 35. 0 -
HI
Cajun, that is strange that they are different pathology reports. I guess the samples they took and tested were just slightly different from each other. But I thought they took samples from various parts of a tumor and compile the pathology from those findings?
Our fertility doc said she sees women/men as young as 20 come in to freeze sperm/eggs. It's awful and YES someone needs to find a cure!
We just met again with our MO and she was not going to schedule a CT scan but after talking with her she did find it useful to do one since I had 2 spots on the liver (one was biopsied before my BMX last year and it was not cancer) just to make sure they don't change or grow. I am having a hard time deciding if it is necessary. We didn't even want the first CT scan because it just exposed me to even more radiation that could cause cancer on it's own. Now after 1 ctscan, 1 mri, and radiation therapy it self I find it hard to decide to add to that. It would give us piece of mind those spots were just the normal spots that 20% of the population has, but the cost of that piece of mind puts us more at risk.
She put the referral in but we have not made the apt yet. We just met with her yesterday. What are other's thoughts on scans to follow up? My MO won't do them unless there's a cause (liver history) or a problem. We plan to get the ball rolling on using our embryos and finding a surrogate and this scan would seal the green light for us to start this process but really are we just being paranoid about the spots? The hospital that did the biopsy took many samples of one spot (there were 2 but they only sampled 1) but there's always doubt.
I'm thinking very hard about this. About the pros/cons. A part of me doesn't want to do it because I fear it'll be bad news or lead to more tests. I'm just not sure if that part of me is over ruling the logical side of me. I feel fine, my numbers (WBC/RBC) are still low but she said it's taking a bit longer for my marrow to bounce back and my liver enzymes look normal. I did ask if the liver enzyme numbers would indicate liver mets but she said not necessarily, dammit that would be so easy if they did.
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Tiger, I take it to mean I had two separate cancers, one that had invaded and one that had not (yet). Both BRCA2 associated, since BRCA 2 is usually ER/PR+, Her2-. I think given time, I would have had two invasive cancers in the same breast spreading like wildfire. Both the DCIS and IDC were grade 3 with ki67 scores of 75 and 78%. So, I had 2 different Luminal B's and if I had to pick the one to invade, I'm glad it was the one with the high PR.
Can they biopsy the legion that they didn't before instead of exposing you to more radiation? I'm one of those people that wants all the tests, all the time, so I'd do it. But that's because I fear mets more than anything else that they can throw at me, be it a heart attack, osteoporosis, or leukemia. But I can easily see that for other people, the opposite decision would make much more sense.
I'm ready to change oncologists. I really liked mine, but I feel the need to move on. I'm going to drive 45 mins. to see a woman who happens to be near the courthouse I work at in a different city. I'll be interested to see how the female perspective differs. Does anyone here have a female MO? I'm SHOCKED by how few there are in this area!
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Cajun, I asked for the female senior oncologist because she is the purported local expert on HER2+, and also I didn't feel comfortable at the time opening up about the non-support at home, but it was a stupid mistake. Most of my doc visits are with the assortment of younger docs, but when I meet with this senior onc, she uses the words "WHEN you get your mets", not "IF you get mets", which honestly depresses and scares me
The local bc women I have since met say the male senior onc is wonderful --- warm, kind, empathic. Both are knowledgable, and I've gotten the impression that major treatment decisions are made by committee (public sector hospital)0 -
Cajun it sounds like your Oncologist is willing to run tests and keep an eye on things. On the female Oncologist front the female at my hospital is cold and calculating I am not sure she would have ran any more screening than my MO. He is kind and compassionate but unwilling to run any diagnostic tests other than basic markers
Tigre I think I would have to decide which decision I could live with and not second guess constantly
Well arimidex gave me carpal tunnel. I am. Just one of those lucky ones I guess. I am going to wait until after herceptin to schedule surgery for it. I am staying on tamoxifen for now and will try astrozole in the fall after I get my hands resolved
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Cajun, the other spot is in a difficult area under my ribs. I think they didn't want to do that spot out of cost/laziness or maybe pure difficulty. I'm at a different hospital now so I'll bring that up, I didn't even think about that. They may see it as a more invasive move but we'll see what they say.
I glad they caught both types of cancer cajun.
My MO is a female. I have encountered 3 women MO's, we fired 2 of them and a third firing might be on it's way. Since one of the trials from Galena Neuvax closed down I assume all will but no one said anything at my last apt. I mean nothing on 7/8 way after the article that John posted that was dated 6/29. I don't like that, leaves an uneasy feeling. We're venturing to find out more about your trial cajun as well as other options. Our goal is to always have a back up plan. We've read that you just have to change MOs sometimes to keep your arsenal fresh. Some have access to different trials or ideas that can benefit us.
I have not seen a male MO so I can't compare but my current MO is very good at listening and accepting our own recommendations and is open to different options to battle this disease, sometimes to a fault.
Exercise, sorry about your carpal tunnel. Yes there might always be a doubt in any descision but I'm learning to let it go (no ref to the Frozen song what so ever - HAHA I know you're humming it in your mind right now!).
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Tigre I meant to say I think the best I could do is decide which decision I could live with. Make peace with it and move forward. I tend to torture myself over past decisions in every area of my life even though I am very thoughtful and methodical in making them.
I am way uneasy about the fact that I didn't even have an mri so alone a pet
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Exercise, I do torture myself too. We didn't even want a MRI or a ct scan. We argued against it because it delayed the surgery to remove the tumor. I bet it was better to limit the radiation you got by not having scans
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El Tigre and anyone else concerned about radiation exposure from imaging tests: MRI involves no radiation at all --- just uses magnets to temporarily align the water molecules in your body so that they are visible to the machine. And Ultrasound studies just bounce sounds waves off your organs --- like sonar on submarines. CTs do carry a hefty dose, and I was really upset when I had to have a second chest/lung CT with contrast dye during chemo because the technicians had gotten the imaging timing wrong --- so I'm actually quite happy the custom here is not to do routine CT imaging unless there are clear signs or symptoms of possible cancer spread. Also I scored a "win", I think: I told the docs I would quit demanding immediate removal of my unaffected breast if I could have breast MRI screening instead of mammograms (mammograms didn't show ANY of my lesions but MRI showed all), and they said yes. Hopefully they will follow through. I can't psychologically handle any more surgery right now, and have to push myself to go in for the Herceptin treatments every three weeks (next one in three days --- wasn't I just in there???)
Wishing everybody a peaceful and comfortable summery week
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Tessu, I'm so sorry they had to do another CT scan, like any of us need more zaps. Thank you for the detail on the tests, I always get mixed up if MRI are bad or good. I may push for an ultrasound. If the spots were non-cancerous then that should be sufficient. I bet my insurance won't go for an MRI but maybe.
Also pursuing Zometa. I get a bone density test today. They have mentioned putting me on it but have not for some reason. Maybe no baseline bone density scan or maybe because I had joint pain? Who knows.
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Hello, lovely ladies!
exercise, two thumbs down for carpal tunnel! I'm so sorry you had to deal with that. But I do think that Tamoxifen will be just fine. I think the benefit of an AI is pretty minimal over Tamoxifen and you have to live. I moved all my living room furniture and heavy rugs around 4 times last night, searching for the perfect arrangement. Yes, with my cancer arm. Yes, I know about lymphedema. But at some point you just want to get on with life, you know?
Tiger, I'm taking Zometa's cousin, Prolia. They may have not wanted to put you on it because the side effects (while rare) are really bad. If you're determined to take it, don't Google osteonecrosis of the jaw. I had to sign a waiver before my first injection! I don't remember having to do that before ACT, sheeeeeesh! Also, you are at high risk of problems if you end up needing significant dental work. And it's crazy expensive. It took a month for my insurance to cover it. That said, so far, I've had few SEs, but it's one of those drugs you take for life and it's cumulative. Also, my MO has said that there have been conflicting studies about whether or not it helps to prevent bone mets in high risk women. He said it was discussed last year in San Antonio and he does not recommend it as a preventative measure for mets. I have osteopenia.
Also for tiger - I continue to have the same side effects from the trial. A mouth blister that comes and goes constantly. An inability to taste much. Red and peeling hands and heels. A low (but not dangerously low) WBC and we'll see what the next round of blood testing has in store for me.
I have decided to stick with my current MO for now and discuss sexual matters resulting from menopause with his nurse, whom I like a lot. I'm just not comfortable talking about it with him and I get the feeling he isn't either.
Is anyone having arm pain after rads and mastectomy? Are the stretches helping? I didn't have ANY pain or restriction of movement until about 2 months after rads and it increases weekly. It hurts to stretch my arms, especially the left one, and lift my kids. It may be the new normal, I just wasn't expecting it. Going to start some PT exercises this week.
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Cajun - Whoa thanks for the head up! Oh man, we'll ask about the benefits out weighing the risks. i'm glad you are having minimal SE's, last thing you or any of us need are more aliments to add to the list
Google images are not kind, found that out the hard way as well.I slacked off on the stretching after rads and my arm ached. I did some yard work and my left arm suffered. It hurt more than usual so i wore a sleeve daily and that reduced the pain greatly. Not sure if it's the same type of pain, but the PT stretches are a good place to start they helped em get back to normal.
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I freaked out after I googled osteonecrosis of the jaw and sent my MO a frantic email wondering what I had done (post injection) and then questioning all the treatment I had from the very beginning. He had to reassure me I had made good decisions. Sometimes I think the MO is like a cancer babysitter. It must be slightly amusing to get random frantic emails at 11 p.m. from your patients. But it also speaks to what this disease does to your head. It's enough to make anyone nuts. At least temporarily.
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Ok, trying yet again. I haven't been exercising, have blamed the mild but chronic headache that is apparently a side effect of either the Herceptin (that goes until mid-October) or the AI (which goes another 9 1/2 years). Well, the week-long vacation I just returned from was so active, we clocked 15,000+ steps a day. So after a couple days "rest" (unpacking and laundry frenzy, etc.) I'm trying yet again to restart the regular exercise habit I had before I found the #$*¥€# breast lump. Today I did ALL the LE exercises, ALL the post-MX range of motion stretches I should have been doing for ages, and just now, 30 min. on the exercise bike. Hoping and praying I can get into the regular exercise habit again. I so very much need it for my mental health. Any physical benefits will be icing on the cake.
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so good to hear about your positive attitude to exercise. I never had good exercise habits. Now the only Excercise get when I am able not too exhausted or walking up six flights of stairs when j drive to work and park in my parking lot there. My knees feel so good after I walk up the stairs the cortisone in the chemo infusion helped my knees too so chemo cured my incipient knee arthritis and my hypertension now my bp is so low the nurse asked me if if I was an Olympic athlete ha
But just a note for carpal tunnel suffers
Try B-6
If you take B-6 and a b complex it will help right away like just s few doses then u will know it does not take long to work that is if it is going to help.
Also the b- complex b-6 and L-glutamine got me through the peripheral neuropathy from chemo
If still helps
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go tessu! Im sooooo with you on exercise and mental health. I'm running again, 3 times a week now, up to 3 miles! Such a great release.
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Woohoo! Go, cajun!!!
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GO CAJUN GO!
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Awe, thanks ladies! I ran 7 miles on Sunday.
Although I must admit, my joints really hurt. I'm not sure if that will ever go away, but I just ran through the pain. 0 -
Hello all you lovely ladies,
I still check in now and then and think of you often. It warms my heart to read the stories of progress and helps me get through tough days. Big cheers for Cajun, Tessu, and all the rest of the exercise superstars. Unfortunately, cancer was not my first disabling illness, so finding a way to exercise at all is a big struggle. Navigating serious physical limitations is never easy, but one thing I have learned is that keeping moving is essential, even if the movement is just gentle stretching. I'm currently looking for work but the prospect of going back is terrifying. Between the chemo induced menopause, the AIs, surgeries, and previous conditions, most of my body hurts. I now have a bad back, bad knees, painful hands and feet, week chest and arms... All of this at 47, and I always considered myself to be "healthy".
Exercise - don't worry too much about the tamoxifen vs. AI issue. I think it is way more important to pick the one that allows you to move forward with life. I did a lot of reading on the subject and I think the key is just to switch at some point (even ifafter a few years). It seems like what was notably less effective was to simply take the tamoxifen for 5 years and then nothing.
Tigre - the radiation exposure issue is definitely not trivial and is something I worry about as well. In terms of the incremental additional exposure, each CT is really dwarfed by the amount we got from the actual radiation treatment. I don't like to have extra tests just for the sake of doing it, but I think it's worth it if it will provide peace of mind.
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Ladies, I think that it takes so much just to get through some of the more brutal treatments that when you finish, you think you'll be sighing with relief, but you discover that you really have to adjust to a new life. Things that once worked don't work anymore. Menopause or bone density issues are lifelong. Pain and mobility issues are real. Because I had ZERO symptoms from the cancer, it feels more like I've survived cancer treatment than cancer itself.
I'm off my feet for a bit. I've developed edema in my legs from the everolimus and have to elevate them and am now also being treated for thrush in my mouth. What is more nasty than fungus...in...your...mouth? Oh, the antifungal treatment that I have to swish and swallow 40 times! Disgusting! Lol.
Regarding radiation, I was completely sketched out by the fact that I couldn't be around my children for 4 hours after my PET scan. That doesn't seem right at all. Fortunately, I was still all hopped up on pain meds from the BMX, so I just went along.
"The ball jumps. The ball rolls. The ball lives in the moment, I am told. The ball pumps and rolls with the flow. The ball laughs as it bounces."
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inSF (((hugs))) for your going-back-to-work apprehension, I'm also scared. Not only because I know from experience my neck-and back pain issues will flare up, and because my short-term memory is still toast, also my ability to retain new information. Aiming for sometime this autumn, and starting part-time at first.
The approach of Wednesday, July 27, my found-the-lump anniversary, is freaking me out. This past year has been nothing short of h*ll in many ways, but from my perspective today, has flown by way too fast. Yes, compared to even several months ago, I'm a lot better at moving forward brave and smiling. But I am still sometimes plagued by those wee hour wake-ups when my crazy scared brain torments me: if my prognosis is 30% for mets or dead by the 5-yr point, I've already "lost" one year of that time
Focussing on positives: I've learned to manage my lymphedema better and know what to do for emergencies. I finally found a very light-weight prothesis and a bra that fits fairly comfortably (I still go without most times, but it's nice to have for those rare times I want to dress up). The local bc women's group gets me out for biweekly coffee and one a month dinner downtown (I would never go alone); I'm making new friends. I've been pulling the "cancer card" on myself to push myself to "do it now!" for at least some items on my Bucket List. I reflect at bedtime "what have I done to make this day count" --- but yes forgive myself when the answer is only "put food on the table", because there are also sometimes awesomes like "finally cooked cherry jam from our own trees, and it's fantastic!"
I am so grateful for this group. You women keep me going. Wishing you all a happy and comfortable day.
Elevate your poor feet, cajun
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Hello Girls Im finding hard to adjust to life after treatment. Nothing is the same anymore. Work hosted a lovely party for me last night celebrating 15 years of me working there. There was a slide show, pictures of me....there it was on front of me how great I used to look compared to now....very confronting. Then theres the part of me that hates myself for being so vain and I hate myself because so many women still die from this disease and im sad because of how I look and feel. They would have loved to live and im wasting time feeling sorry for myself.
I am going back to the gym on Monday and push past this negative emotions. It was a year ago today I was diagnosed.
Thanks for the freedom to vent these feelings.
Wishing you all better days and healing.
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Hello Girls Im finding hard to adjust to life after treatment. Nothing is the same anymore. Work hosted a lovely party for me last night celebrating 15 years of me working there. There was a slide show, pictures of me....there it was on front of me how great I used to look compared to now....very confronting. Then theres the part of me that hates myself for being so vain and I hate myself because so many women still die from this disease and im sad because of how I look and feel. They would have loved to live and im wasting time feeling sorry for myself.
I am going back to the gym on Monday and push past this negative emotions. It was a year ago today I was diagnosed.
Thanks for the freedom to vent these feelings.
Wishing you all better days and healing.
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Cinque, it's my cancerversarry too! :-)
I'm sorry you are struggling. Don't beat yourself up for feeling how you do. If one more person tells me how "cute" my chemo curls are... gag. New body, new mentality, new life... it takes adjustment. Give yourself permission to grieve the loss of your former self for a while.
Yesterday, I worked myself into a FULL panic after court which involved me finally curling up on my bed in a fetal position and praying for an hour. I felt like a ticking time bomb to mets and I know I'm on a short leash based on how aggressive my cancer was. It's coming soon and spreading like crazy or they got it all out and I can move on to the next BRCA2 cancer. Lol. But God said, "When it is your time, you will be ready." I took so much comfort in that promise. Today, I woke up feeling anxious but good and got the all clear from my MO to move to every 90 day visits on the trial.
In other news, MO's nurse said they are now doing a laser vaginal procedure for women lacking estrogen to help with painful intercourse. Woo hoo! I need something, it hurts like crazy and I have NO interest. I mean NONE. Not good for a marriage long-term.
I was also told to do crosswords, Suduko, and Scrabble to help with cognitive function which has SHARPLY declined and hurting me in court.
Sending you all much love and hugs! Today, my "big new self" (in the words of my 3 year old) is ONE year old!
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