Testing, treatment, side effects, and more.
Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM by TonLee
This is primarily for people who find themselves with THREE +'s by their diagnosis.
If you are new to breast cancer, please click on the link below and read. It is "What I Wish I Knew At the Beginning of Treatment."
Posts 31891 - 31920 (32,008 total)
Aug 12, 2017 07:04PM TampaBayBucsGirl wrote:
I hear you loud and clear. It has been a very long journey.
The odds are in your favor based on your non recurrence number. Thank goodness! Have a Happy Monday!
Aug 12, 2017 08:02PM KB870 wrote:
Oh Vicky that is so good to hear!
Aug 12, 2017 08:27PM Jumpship wrote:
I was told Mammaprint wasn't for triple positives. Maybe it's just my doctor
Aug 12, 2017 09:08PM Tresjoli2 wrote:
having a bit of a pity party for myself tonight. I have had three goals since my treatment. 1) keep the cancer from coming back 2) lose the huge amount of weight I gained during treatment 3) deal with some worsening depression. The problem is these goals conflict! Lupron causes depression and weight gain. Tamoxifen prevents me from taking most anti depressants and weight loss medications. I stop Lupron, which improves my joint pain and migraines, but prevents me from switching to an AI so I can find an antidepressant. ( Effexor and celexa were awful). And never mind the vaginal atrophy at 42! Ahhhhhhhhhh
Ok. Vent over. Pity party finished. I just needed a moment with those who would understand.
Love to all!
Aug 12, 2017 09:18PM HapB wrote:
Tres, we all understand feeling blue. I don't know much about all the drugs and their interactions, but I wonder whether there is a pharmaceutical solution that could work better for you. Quality of life really matters. Don't give up until you find a combination of meds that will work for you. All these darned drugs are hard on the body!
Aug 12, 2017 09:21PM SpecialK wrote:
OncotypeDx is definitely not for TP patients, but Mammaprint includes identification of both Luminal B and ERBB2 (Her2+) molecular subtypes, so it is appropriate for TP. In fact, not all who test positive for Her2 are ERBB2, some are indeed Luminal B, and Mammaprint has delineated this with the type of assay done. There is some thought that those who test as Luminal B benefit from the addition of neoadjuvent Perjeta
Aug 12, 2017 09:26PM shelabela wrote:
Yay Coach Vicky! So exciting your done with herceptin!
Aug 12, 2017 09:27PM HapB wrote:
SpecialK, you are always so helpful! My MO never did either of these tests. I assumed that all tirple positives were recommended chemo regardless. Is that true? I suppose there is no use now in having the test done.
Aug 12, 2017 09:52PM ElaineTherese wrote:
I'm trying to lose weight, too, and it's hard because Aromasin has made my insomnia worse. So, I'm thinking about Ambien. Plus, Aromasin + Zoladex has given me full-blown osteoporosis, so I now have to take Fosamax. Ugh. Cancer is truly the gift that keeps on giving!
Hope your situation improves soon!
Aug 12, 2017 10:21PM - edited Aug 12, 2017 10:23PM by SpecialK
hap - it is a combo of receptors, her2 status, tumor size/nodal status, and sometimes age, that determine the systemic treatment recommendations with Her2+. Microinvasion, usually not - and less then .5cm (5mm) is a judgement call. Anything 6mm or above usually gets a recommendation for chemo and Herceptin. 2cm and larger, or smaller but node positive, will get all that plus Perjeta. Many oncologists don't use assays for Her2+ patients because chemo and targeted therapies are somewhat foregone conclusions - you are correct. I had Mammaprint testing way back in 2010, but that was because my oncological breast surgeon was participating in a study with Agendia, and it was a biopsy sample that was sent in to them, and that the assay was performed on. I'm not sure if he had known ahead of time that I was Her2+ if he would have sent it. I had a 2.6cm tumor with two positive nodes so I was definitely doing chemo and Herceptin regardless. OncotypeDx is not appropriate for known Her2+ patients, so you don't see done for TP
Aug 12, 2017 10:49PM - edited Aug 12, 2017 10:53PM by kae_md99
what is the difference between prolia and fosamax ?i ask because i am already osteopenic based on baseline dexa scan and i will be doing zoladex plus AI. i wonder if i could start on something already... thanks
Aug 12, 2017 11:15PM ElaineTherese wrote:
Fosamax is a biophophosonate, whereas Prolia is amonoclonal antibody. (Monoclonal antibodies are made to target and destroy only certain cells in the body.) My insurance company will only pay for Prolia if Fosamax doesn't work. Unfortunately, my insurance company only pays for a dexascan every two years.
Aug 13, 2017 04:06PM LTWJ wrote:ok, just found this group, I've been posting on the started chemo 6/17 group, I need some advice or any help. I had my 4/6 tchp a week ago last Friday. I have experienced bad diarrhea this cycle, bad enough that I'm not eating either. On 3/6 cycle my onc gave me Zyprexa to help with nausea. It worked great and I actually had 2 weeks of feeling really good. At my 4/6 chemo I took tne Zyprexa that morning. Just before they started my chemo I got really groggy and started slurring everything. They got my onc and he said we had to discontinue to Zyprexa and throw I think out. I had crazy antsy legs during my chemo but it all wore off. But i have had extreme nausea and diarrhea with this cycle now. I have been taking lomtil 2x a day since day 1 of chemo but this cycle I'm up to 4x a day. My precsip says only 2 a day but I just read to take 2 at a time at first so I just tried that now, we'll see how long it lasts. No matter what I do, brat diet, anything, it's diarrhea, these pills just give me a few hours of not having to run. I'm very weak right now because eating is awful- texture and taste are so bad. I tried an ensure this morning but then those make the diarrhea much worse. My husband wants to look in cb oil? Or whatever that is. Anyone have any other solutions or things they've tried? I bought ginger bites but they burned my mouth and the diarrhea seemed to be worse. I've had through every cycle 1 bad week, 1 ok week and the third feeling pretty good. Now I just want to stay in bed and I keep telling my husband wake me on Oct 1! Thank you for any help 😊
Aug 13, 2017 04:26PM Suburbs wrote:Hi LTWJ. TCHP can be brutal. You might consider having your MO provide IV fluids a few times before your next infusion. For infusion 6, Benadryl predose helped me greatly. For some, Benadryl predose is standard.
Aug 13, 2017 04:38PM Gigilala wrote:
LTWJ: I had same chemo TCHP and I had a bad diarrhea TCHP is very hard
Call your doctor and ask for fluids
Aug 13, 2017 07:38PM deni1661 wrote:
Tres, I'm so sorry you're going through a tough time. You are entitled to vent as we all are! I agree with Hapb, quality of life is very important and your MO should be offering solutions to offset the SEs. It may take some experimenting to get the right combo so hang in there. My MO has me see the naturopath for SEs - I'm taking Bosswilla for pain and Curcumin for inflammation (helping somewhat), I take L-Lysine for stress, and vitamin D to build up my immune system. He suggested I drink a shot of wheatgrass around noon to help with fatigue. I'm still playing around with that one. Coconut oil works really well on the lady parts. I also use it on my extremely brittle hair and it's been helping to reduce breakage. Losing/maintaining weight is a tough one; I struggle with that too. I know it sounds weird but the way I'm able to stick with a mostly plant based diet is I tell myself "that food will make my cancer grow". I am literally afraid to eat certain foods especially sugar, alcohol and dairy. I do allow myself treat days but I feel yucky after eating those foods because my body is used to the healthy stuff.
I wish you the best in finding solutions that make the SEs more tolerable. Take care :)
Aug 13, 2017 07:45PM deni1661 wrote:Thanks specialk for the explanation on the Mamma and Onco tests; I never did have a good understanding. My MO uses Mammaprint to determine whether chemo would benefit his patients. He is unique in that regard because he doesn't automatically offer chemo for all his HER2pos patients but instead does the Mammaprint and offers several options based on results. The Mammaprint test was required as part of the clinical trial
Aug 13, 2017 08:09PM HapB wrote:
deni, I have been trying to adhere to a plant based diet too and have been doing a lot of research. I am confused about the curcumin. I had started using curcumin over a year before my diagnosis. Some of the research says not to use curcumin with breast cancer, especially ER +. I was disappointed to read this, because it had been helping me with psoriasis and other issues. I don't know which source to believe when it comes to diet.
Aug 13, 2017 08:12PM HapB wrote:
deni, I am interested in learning where your current MO is and would like to know what alternate treatments he offers HER2+ patients.
Aug 13, 2017 09:30PM - edited Aug 13, 2017 09:33PM by Juli24
LTWJ, I had the same horrible diarrhea and inability to eat with TCHP. Doc tried everything. Finally went to a double dose of Lomotil to begin, 4 hours later 2 Imodium next dose was the Lomotil & if needed returning to the Imodium. Granted, this was an army of treatment which only made the symptom tolerable but much better than they were. The day after chemo I went in for a Neulasta shot along with a fluid IV. Two days later another bag of fluids. This was so enormously helpful I just cannot tell you. The trick for me was to not give up & to keep trying. I ate whatever I could get down regardless of whether it was good for me. Sometimes it was a Lara bar and Fritos....anything to get something in my stomach. I learned soup with chicken in it went down ok. Things I used to love turned my stomach but I just kept trying. Keep asking your onc what else you can try and experiment with foods. Don't worry about what you eat - you can improve your diet when this part of treatment is over - if a donut sounds like something you can tolerate I say eat it!! By no means is my formula right for everyone except the "keep trying" part. Good luck to you & I will be praying for your comfort, julie
Aug 13, 2017 10:01PM CCNC wrote:
I also had horrible diarrhea during treatment. I found cutting out all dairy products during chemo improved things tremendously. It was a complete fluke. I had watched the documentary forks over knives after my third treatment, which is what caused me to stop the dairy. I was very suprised the gastro issues improved to the point where I did not take a single immodium during the rest of the treatment. I think the ensure drinks contain dairy. It would be worth trying to see if it helps. Later I read that chemo can cause some people to become temporarily lactose intolerant. Hang in there.
Aug 13, 2017 10:06PM - edited Aug 13, 2017 10:08PM by LTWJ
Juli24, thanks for your help. I did take 2 lomitil at 2 today and I haven't had to go since then but I'm really dizzy. I keep drinking water and I'm calling tne dr in tne morning to get fluids and whatever. I've lost 20 lbs already since chemo started. Usually during my 3rd week I'm able to eat more so I put some weight back on. I'm sticking to the brat diet today but will try more tomorrow. I was eating spoonfuls of maple syrup earlier and it actually tasted good . I have found that any of tne boost or ensure drinks make the diarrhea worse so no more of those.
Aug 14, 2017 01:05AM Lita19901 wrote:
This was published back in March so you are all probably aware of it already, but just in case, here goes!Shorter Herceptin Treatment Cheaper, Better for HER2-Positive Breast Cancer Patients
Aug 14, 2017 01:42AM - edited Aug 14, 2017 01:53AM by HapB
lita, I was not aware of this and I don't think it is accepted as standard of care in the USA. I am not sure how studies from other nations are handled by the scientific community here where the pharmaceutical industry has so much influence. They surely woud not want a shorter course of treatment with this very expensive drug.
What is interesting to me is that this study was done by the NHS, with the purpose of determining whether a shorter course of treatment could save the government money. The studies done in the USA were funded by the pharmaceutical company that makes Herceptin with the purpose of making money for stockholders. It just goes to show you that data can be manipulated depenidng on purpose and we are, in many ways, guinea pigs!
Does anyone have any input on this?
Aug 14, 2017 08:37AM sfar wrote:
Lita, thank you for sharing the study. I can't imagine how I missed it. It actually makes me feel slightly better due to the fact that I had to stop Herceptin after 8 treatments because of heart damage symptoms. I am not sure how I feel about the study being attached to government cost savings or drug companies profiting from our treatments (yikes). Both make me uncomfortable and suspicious.
I did recently receive $800 from the company that makes Herceptin to help with my out of pocket costs. If you haven't looked into the program, you should. My treatment center brought it to my attention and handled the paperwork.
Aug 14, 2017 09:47AM Lita19901 wrote:
sfar and Hap - I thought the article was an interesting potential piece of the puzzle, although I don't really expect it to alter standard of treatment here in the U.S.
I don't necessarily believe that studies are being manipulated to benefit pharmaceutical companies but I do find it so very, very frustrating that the data from studies is not being mined to the fullest degree.
Aug 14, 2017 10:31AM HapB wrote:
sfar, could you tell me more about the dollars that you got from the company? You say you had heart damage symptoms? I hope that you did not sign anything to accept 800 dollars in settlement for any future claims? Heart issues are life altering and don't always show right away. I used to work as a medical negligence attorney and I am very suspicious of this.