TRIPLE POSITIVE GROUP
Comments
-
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 😊
0 -
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.
I was completely wiped out after infusions 5 and 6. I moved from the couch to the bed for 6 weeks and stopped working. What you describe could be considered normal. Everyone is different. The cumulative effect can can be debilitating.
October is just around the corner. Hang in there.
0 -
LTWJ: I had same chemo TCHP and I had a bad diarrhea TCHP is very hard
Call your doctor and ask for fluids
Good luck
0 -
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
0 -
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
My hometown MO offered standard of care and when I asked about taking the Onco test she said it wasn't necessary and dismissed me. She gave me one course of treatment and wouldn't even discuss alternatives which is why I went for a second opinion.
0 -
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
0 -
LTWJ
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.
0 -
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.
0 -
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
0 -
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.
0 -
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.
0 -
HapB- It was part of a program called Genetech BioOncology Co-pay Card. I didn't fill out or sign anything. My oncology office financial person contacted me to tell me that it was available and would I like her to apply for me. I checked with my insurance company to make sure there were no issues with me accepting money. Genetech sent the check to the office and they applied it to my account. Unfortunately, I had just paid the bill so it took awhile, but eventually the doctor's office sent me a check.
My cardiologist has been treating me to get my LVEF back to the normal range. It dropped to 40% from 53%(which was low-normal to start) My oncologist put the Herceptin on hold for 6 weeks and it was not coming back. We waited another 6 weeks and it was slightly better, but she said she didn't want to take any more risks. I have been on heart meds and my cardiologist feels that things will be back to normal in September after an ECHO. If not I will have an MRI. Let's just keep our fingers crossed.
0 -
For all of you who are writing about the cost of drugs -
I recently got a second package of "stuff" from Genentech, the makers of herceptin. I wish they would lower the costs instead but both packages had some helpful information. The first was a cookbook - organized for symptoms or times of chemo cycle and the second more general info. (I think I got them in the wrong order but oh well.)
"Genentech Access Solutions" has two programs - one a co-pay card and the second a Care Foundation for people who don't have insurance or can't afford the co-pay. Info at 888-249-4918 or Genentech-Access.com/Herceptin.
A friend of mine also got help from a private foundation (wish I'd asked for more specifics before she died) for her drugs over a number of years. She heard about it from her MO. Worth asking yours if you need it. Or your nurse navigator might have the contact if she is better than mine.
Have to admit that I am inclined to get on my political soapbox when I read about those of you who have been denied the best treatment by insurance companies. Just got off the AI forum and there is concern about the cost of those drugs too.
0 -
All,
It is over. I rang the bell yesterday at Clearview Cancer Institute.
I am finished with infusion treatment. I cried a lot yesterday. It is such a relief to have this behind us. I say "us" because my husband has been by my side with each step. I know I am fortunate.
Just Arimidex left for 4 years, 8 months or 9 years, 8 months.
My Nurse Practitioner said she thought triple+ was the hardest because it took so long to finish. She asked if it felt like this year would go on and on and not end. I did not know how to answer, In some ways, I don't remember life before diagnosis. In other ways, it feels rushed as if it all started last week.
We talked about some other topics that I believe she will take forward in cancer care. Those topics included PTSD in 80% of BC patients, the need for a holistic approach (mind, body, spirit), the need for fitness / exercise / diet, the increased presence role of the Social Worker in early care and immediately after diagnosis, and how a bilateral mastectomy limits the body and takes a long time to recover. She seemed surprised that it has only been in the last couple of months I can empty the dishwasher and put 3 plates at a time over my head into a cabinet. My initial surgery was 12 July 2016 and reconstruction 20 January 2017. The February hysterectomy did limit my lifting for another 8 weeks.
I had sent her a copy of the prune study. She agreed with the findings and asked me if I could eat 10 prunes a day. I can get down 1 a day! LOL. She shared she tried 10 dates a day when she was pregnant. The thrilled lasted about 4 days for her.
Anyway, hang in there everyone. I never thought I could finish and I did. We are all stronger than we know!
Vicky
0 -
coachvicky - excellent!
0 -
Congrats, coachvicky! Your MO sounds like a keeper.
0 -
coach vicky,
what is the prune study?
0 -
Coachvicky, congratulations! What a great news and relief it must be.
0 -
SpecialK, you have so much knowledge when it comes to BC, I am amazed. Do you have any links or a further explanation regarding what you posted earlier in this thread about that not all who test positive for Her2 are ERBB2, some are indeed Luminal B. Are there any differences between all triplepositives? Does it affect the survival rates and further statistics? Shall they take it into consideration when they determine the type of treatment? I have the first meeting with my oncologist on Thursday and I am trying to make a list of the questions, have already got some help from people on this board but I welcome every piece of advice. I am impressed that you have been on this thread from the very start. I have not been posting much but from since I am +++ I have been reading this thread from the beginning, because I just want to know everything that may be useful for this type of bc. Am now somewhere on page 60, already pass the story about your husband helping you with your hair and the armpit full of flowers afterwords, these small touching things vs this awful disease, this story made my evening yesterday.
0 -
coachvicky, bravo and congratulations, Thanks for sharing. I am looking forward to survivorship care!0
-
CoachVicky. I too am interested in the prune study.
0 -
cherry - reading this thread from the beginning will be a Herculean task! Kudos to you if you can get through it! One of the reasons I still post here is to show newcomers that you can get to the other side, as well as trying to pass along any tips and knowledge I have gathered along the way. Not all TPs are the same - differences in tumor size and nodal status can cause the addition of Perjeta - or dictate different surgical choices. Some with weaker hormonal receptors may not benefit as much from anti-hormonal meds, and some oncologists chose different chemo regimens for an assortment of reasons - either clinically or center policy driven. If you take my case for example, my onc does not combine Adriamycin with Herceptin due to the potential cardiac issues - even though I had a relatively large tumor and positive nodes. A different onc might have insisted my situation meant I needed AC-TH instead of TCH. If I was treated today, I would receive Perjeta since I fall into the criteria, but it was not available when I was treated. Many on this thread have been able to receive single agent chemo based on stage. So, while we are all TP, there are differences in treatment decisions based on our individual situations.
Hang tight and I will get you that info on the ERBB2 and Luminal B and the addition of Perjeta. I'm posting on my phone because I had a vascular surgery on my right leg yesterday - I have to keep it elevated - and searching stuff and attaching links is harder, lol
0 -
cherry - here is the link I referenced earlier. Determining whether one is ERBB2 or Luminal B might require Mammaprint, no sure if any other testing modalities can make the determination. However, since your diagnostic info so far indicates that you will likely not receive Perjeta, this info may be moot.
0 -
That is awesome Vicky! We will get there! I can understand the crying.
Shel
0 -
I also made some notes from a couple of pages back while I was elevating my leg, lol! This will look like a stream of consciousness post, lol!
LTWJ - I would recommend getting fluids IV for several days in a row, with steroids, to help combat your nausea, and help with potential dehydration from the Big D. Also, if you continue with intractable nausea despite several anti-emetic drugs, ask your MO about a Sancuso patch. It is a longer term, time release skin patch for nausea. It is often used as a last effort due to cost, but those who have used it report good symptom control. When you move to H only infusions, add a probiotic, it made all the difference for me.
There were some posts about diet - maintaining and/or losing weight can be a challenge for those of us who do use anti-hormonal therapies, particularly after chemo and targeted therapy may have caused weight gain. I struggled with this and my usual approach - South Beach diet and 5 miles a day did not budge the scale one iota. I switched to an anti-inflammatory diet - cut out dairy, soy, peanuts, gluten, eggs, sugar and corn. These foods are either high in sugar - either refined or natural, doused in pesticides in most cases in the US, or people are frequently allergic to them. This was the only way I could lose weight, and maintain the loss. I follow the Dirty Dozen, Clean Fifteen as far as produce, eat grass fed or pasture raised protein, and choose low glycemic and clean, non-GMO foods. One of the issues with following any diet, including a plant based diet, is your personal viewpoint about estrogens in food - many plants are phytoestrogens. Unfortunately, not enough is known or communicated to breast cancer patients about how to eat following treatment. You will find almost as many approaches as individuals, but this is what has worked for me.
hap - interesting study about short course Herceptin, this was not a trial, but rather a meta analysis of other studies which had a mixed bag of administered drugs and patient populations. Some of what they looked at was apples to oranges If you click on the study itself and read until the end, they admit that there MAY be a benefit in shorter course of Herceptin, but that it needs a better and longer look. Also, the patient population who received the 9 weeks of Herceptin had less than 60 participants - not a large number.
hap - the Genentech co-pay program has been around for a while, it is purely to help those with high out of pocket costs. I know a number of people who have used it who had no cardiac impact during treatment.
Also, for the record, Genentech is a wholly owned subsidiary of Roche - which is a Swiss company, not American.
Edited to change my response regarding the study lita posted to hapb, as she had solicited responses to that information. I had mistakenly addressed my response to lita.
0 -
Hi SpecialK, thank you very much for the link, I have just red it. I hope your surgery went well, I wish you a full recovery. I do not mind reading a 1000 pages, I find it very interesting anyway, it has become my daily pastime since I cannot read anything else after I have been diagnosed. I understand that it is not normal but what is normal in my current state of mind when everything circles about the upcoming treatment and I want to learn as much as possible. Reading your posts back in 2011 and seeing you here now, knowing that you have been through this treatment, this is priceless for us who just got diagnosed. I did not even know anyone who had bc, I did not know what to do or whom I could talk to before I found this forum. I was so shocked, family, councellors, doctors trying to talk to me and I just looked at them and thought what do they know about my condition, how can they even imagine what I am going through? Now when I walk on the street and see people around me living their lives, running their errands, meanwhile I feel like I am looking at them from a glass jar where my life is in the pause mode because I do not have a free will in the same way they have, at least I know I am not alone. I am soon 45, I just thought how many women in my age get this diagnosis, and when I found this community I saw how many we actually are. Of course I hate this fact and wish no one has ever been diagnosed with bc but for my own part I am glad I have someone to talk to, someone who understands. My point is I will just keep reading. As far as the article is concerned I did not find anything on ERBB2 (does ERBB2 means Her2+ btw?), I thought that Luminal B can be both Her2+ and HER2-. My status is ER80% PR60% Her2+, I thought I was Luminal B but I do not know anything about my ERBB2, shall I ask my oncologist about that? I do not even know how to interpret my hormonal status, if I am PR 60% what does happen to the rest of these 40%, 60% in relation to what? My tumor is 1,5 cm and then I also have additional DCIS, no positive nodes after SN surgery and grade 3. Since they have already took it out no neoadjuvant treatment is valid for me but I am concerned about whether Herceptin alone is enough for us triplepositives. Back in 2011 you have discussed Herceptin resistance in this thread and I found some articles that are stating that Luminal B type with hormone positive tumors do not respond to Herpecin as well as Luminal B hormone negative do which corresponds with this latest article you sent to me. Do you have any more info on that? Shall I raise my concern to my oncologist? Once again, thank you very much for being here for us newbies.
0 -
SpecialK, I was amazed when researching on vegetables how many contain estrogen/(phytoestrogens)progesterone. It's hard to know what to do, I actually thought about going vegetarian until I started to research. We're darned if do and darned if we don't.
0 -
moodyblues, exactly what I thought when I now saw the list of phytoestrogens on Wikipedia. I have adjusted my diet since diagnosis at first excluded all proteins but now started with fish and chicken because I red that I will need a source of protein during the chemo treatment. I have stopped with diary and beans and trying to buy as much eco as possible, have now red the list of Dirty dozen and Fifteen clean to my husband, but oats, really? I have been eating a large portion of plain oatmeal with a dried cranberries for a month now, does it mean I have to stop? And even apple and carrots? What can we eat, I stopped eating bread as well, no pasta, very little rice and only basmati. In every book that contains anticancer recepies it says that one shall eat pomegranates. And we did, we love them and I always bought a lot during the season. And what about curcumin, is it good for hormone positive bc or not? I am all confused. Back in 90-es I was told that curcumin prevents cancer, since that I used it in all my stews and soups, later I found out that is only effective with pepper and started adding it as well.
0 -
I am on Medicare, with a Medicare Supplement and have only been charged my deductible, which was $181, if I remember correctly. Medicare and Spplement company have paid everything else. I had expensive private insurance but knew we couldn't afford the deductible, so breast tumor had to waituntil I turned 65. Everyone should have Medicare. And not have to wait until they're 65.
0 -
way to go Coach Vicky!!!!
0
