TRIPLE POSITIVE GROUP
Comments
-
Want to give an update. Tomorrow is my last chemo. Hope to get it done and over. Not easy but I am getting this close.
Did a genetic test. Found two issues. One is BRIP1. The other is MUTYH. Did some research, BRIP1 seems to be associated with increased risk of ovarian cancer. Scheduled a meeting with OBGYN oncologist to discuss the removal of ovary. Can't find much info about MUTYH. Can't get an appointment with genetic specialist since there is a waiting list of over three hundred people.
Scheduled appointment with radiation oncologist. Soon move on to the next phase. Perjeta and Herceptin will be for a year.
About diet and healthy life style. I don't know whether they help reduce the risks of recurrence or met. But I do know it does not matter in getting breast cancer. I've been super healthy. Never spoke or drink. Eat more fruit, vegetables, fish than most people I know. Don't consume much meat. Don't drink soda and probably have dessert a handful time a year. Work out regularly. Slim build. No family history. Mom and older sister are all healthy. Did not help prevent getting breast cancer when just turned 45.
I now think it's more bad luck than anything else.
0 -
JVP, Elaine, Whywhy and others - thanks for your posts. I do hope you don’t get discouraged when your opinions are shot down so quickly. Some responses have been seemingly condescending and dismissive. Please know that this is one response. Many of us agree with you completely. I know I will get a snarky response from Hap. So be it. Hap, if you would honestly review your posts you might see a pattern. I know you are a good woman struggling like the rest of us. Unfortunately your manner of communication turns a lot of people off thus causing some to just disregard your posts or worse to stop posting. Sorry to be so blunt and this is just my truth and opinion.
I am so very sad today. Because of my diagnosis I have been taking care of a few things in life. One of those related to my little 6 year old dog. He’s a fluff ball and a character - a Teddybear if you know the breed. Very loving and loyal. For the past few months it has been obvious he has been aware of my condition. He became extremely possessive of me to the point of aggression. He also developed behavior issues. For example...every time I coughed or moan he peed wherever he was....carpet, fabric blinds, furniture, etc. Prior to getting sicker he was perfectly housetrained since a small pup. We never yell at him but he knew he was wrong and had the saddest face. We did take him to the vet for a slew of tests all of which were negative. Vet said this isn’t unusual when Pack animals understand something is terribly wrong with their owners. To make a long sad story shorter I’ve been looking for a new family for him to love and love him. This breed has a long life expectancy (hubby has heart issues making neither of us good long term fur baby parents). Unexpectedly we found a “perfect family”. I had to say goodbye my love. Hubby took him and a carload of his toys, beds, food, blankets, bowls....you name it...he is a spoiled pup to his new family. I sat here and cried my heart out but, you know, as heartbroken as I feel I also know I did the right thing for my baby. I wish I knew how long this hurt will last or when I will feel better about loving him enough to let him go. Can’t write more tonight. Just wanted to share.
0 -
juli - I'm so sorry you had to give your pup away, even while knowing it was for the best, doing so had to break your heart at an already difficult time.
0 -
HapB, thank you for clarifying your stance on alternative therapies. I have not had time to read all of your posts and certain ones were read out of context. My apologies.
I, too, am no stranger to the value of lifestyle changes (nutrition, exercise, sunshine) having studied behavioural medicine as an undergrad. However, you will, no doubt, agree with modern physiological psychology that disease models being studied today no longer simply look at host and agent, but rather host implicated in a huge web of causation; i.e., many, many factors come into play in bringing about an imbalance in the homeostasis of the body (physical including genetics, emotional, spiritual, environmental, etc.). The problem with many studies reported in PubMed and elsewhere is that their focus is so restricted (rightly so to control for validity and reliability, say nothing of experimenter error), that it is virtually impossible to extrapolate any conclusions, unless they're large longitudinal studies!
Furthermore, I find it interesting that Steve Jobs, despite adhering to his supposedly very healthy vegan diet, succumbed rather quickly to his pancreatic cancer. Thus, we know nutrition is only one strand of the web of causation, as I'm sure you will concur.
It's good to know you're au courant with many studies, and I'm sure we'll all benefit from your sharing same with us. Thank you, once again, for your clarification. I don't think anyone wants you to stop posting here.
P.S. I am a somewhat fan of Dr. David Servan-Schreiber -- he survived an aggressive brain cancer 19 years when his prognosis was approx. 2 years. I have read his book, "Anticancer -- a New Way of Life", along with Joel Fuhrman's books, Mercola, and many others. While I appreciate much of what they write, I find that they often contradict one another leading to endless confusion!
0 -
Juli24, oh no. I can't imagine how tough it is saying goodbye to your little buddy at this time. I know nothing I can say will make you feel better. You have helped me considerably though. My pup has been exhibiting similar behavior. Over the summer as I was recovering from surgery, she literally had to be carried outside to do her business. We attributed her behaviors to old age. I will be more mindful after reading your comments and consult with the vet. I thank you and send hugs
0 -
So many posts since i checked in last so I'm sure i will miss many people. I honestly don't read a few of them too depressing, i come here for support i think there should be a different thread started for all the "studies, news articles, any of that stuff" to much debate, everyone is entitled to their own opinions, sorry.
Things are going ok here, having a hard time adjusting to the slow down in life. Things were so busy for so long and now boom no appointments, what to with all my time? I overthink that's what i do! What i think about most is how precious life is. I was never one to live in the moment before but i am now.
I have also been working with the local mammography department to start a buddy program. So what it is, when a lady comes in and is diagnosed they give her my number and she can call me to talk about anything, i have had 3 people call, 1 lady is single with no family around.
Hope everyone is doing good
vicky, who did your tattoos? My PS has a tattoo artist that does them. He does a great job.
Juli, so sorry you had to get rid of your doggie. My dog has been so snuggly this last year.
Cherry, so happy you are doing ok.
0 -
Hi HapB,
Oddly enough, nope, they think this is a completely new tumor. The cancer center folks scratch their heads when I explain that in 2004, treatment for DCIS was lumpectomy and then booting you out the door. Seriously! The jerk who did the surgery screeched at me, “This isn’t cancer!” The only thing I got was mammograms every 6 months at the behest of my gyn.Times change, thankfully!
Dee
0 -
Nobody needs to be constantly told that if they eat right (whatever that is this week), stay slim, exercise, grow up in the ideal pesticide-free environment, that they won’t get cancer. Many people do these things, do the best they can, and STILL get cancer. We don’t come to this forum to be blamed for our disease. I am here to compare common experiences of TP cancer, hear about different modes of treatment, get support for the journey. Don’t shame me for my diet, weight, slothful habits. I feel bad enough already.
0 -
astyanax66 (Dee)
My BBF from high school and to today is named Dee.
That is great news that your Medical Team is challenging your HR folks. After being HR for years, I can tell you that I found most HR people sworn to find why something won't work instead of how can this work. There, of course, are exceptions. I lost count of the times I would say to a supervisor, "What rule / regulation lead you to that decision?" Usually none.
About chemo ... it really is different for everyone. I made a few decisions about how I would handle chemo after my first session. Cancer had already robbed me of the breasts that I once loved as well as raped my husband of his freedom because he became my caregiver. Chemo was not going to rule my life nor was my Oncology Team. Nice people but not the bosses of this show.
My husband and I worked closely with my Primary Care. He reviewed every lab and every test. My Oncology Team was somewhat reluctant to forward all documents to him. Under my HMO plan, the referring physician must get a report for every appointment referral they make. It was my Primary Care that monitored my thyroid levels. He found the pattern and made a change in my prescription. I share this because I believe the Oncology Team only sees a "cancer patient." My Primary Care saw / sees "me." Please ensure someone is seeing you.
A very dear friend emailed me the day after my first chemo. She wrote that she hoped I was up and walking. I was in bed feeling sorry for me and planning to "rest." My friend told me at her cancer diagnosis many years ago, all she wanted was to see her children graduate high school. She did as well as see them with graduate degrees. I figured she must have done something right. She said you must work with your chemo to get it through your body so it will work for you. Well, I got my fat ass out of bed (I weighed 147 pounds then) and I walked on the treadmill. It was the hardest 20 minutes I think I had ever done and I did not get far. But I walked. I walked most everyday throughout my chemo. If you can move, move. If it is just a walk to the mail box a couple of times a day, do it.
My treadmill broke Monday. I am walking outside now. I never thought walking would be such an important part of my life. In many ways cancer opened my mind an my eyes to a better way of living. I don't know if lifestyle gave me cancer. I do believe, like HapB, that there are some changes each person can consider. If those changes work, do them. One thing my husband and I have done is changed our eating habits. We eat real food and as little unprocessed food as possible. My HDL (good) cholesterol increase 32 points from my last lab this month. Today I weigh between 123 - 125. Hubby has lost 85 pounds since diagnosis (June 2016).
Herceptin can be brutal on your heart. I think walking saved my heart from problems. I have no proof nor a study to back up this belief. My MUGA scores increased during chemo. I have a heart mummer already and was afraid of additional damage. The ladies that shared their Herceptin stories in this forum were a great help to me in understanding how to deal with this drug.
Many YMCAs offer some sort of fitness 12 week course for cancer patients. If there is one where you live, please consider joining it. I joined one and enjoyed it. I also learned some exercises that I have continued.
I also decided to to internally say "bull sugar" every time someone on my Oncology Team told me what would happen. Here are a few of their comments (from the nurse navigator, nurse practitioner, and oncologist).
Everyone gains weight on chemo.
You will lose your hair.
Your eyelashes and eyebrows may not come back.
I am uncomfortable prescribing X for you. Get the Rx from someone else.
It is just fatigue. Everyone gets tired on chemo.
We will deal with X, when you finish chemo.
You don't need a hysterectomy. If your cancer comes back it will be in your lungs and / or brain.
Did we give approval for a dental cleaning?
Here's an Rx for an anti-depressant. Just promise me you'll fill it an take it if needed.
I could go on and on. There is a forum for "stupid comments." I have contributed there!
Anyway, I did not lose all my hair and I lost weight. It was more than "just fatigue." My saturated iron dropped and I ended up with an iron infusion. When that happened, it was the worse part of my treatment. Fortunately, the dietician at my center helped me through this time. Please stay on top of your labs. Know what every value means. If you see something you don't understand, ask for an explanation. Ask here too. SpecialK knows just about every medical thing that can happen on this journey.
I took the advice on my Gynecologist and I had the hysterectomy. Never looked back.
I kept six-month dental cleanings.
Once again, I have rambled on and on. My hope is that you remain in charge of you. Sure there are medical experts but as TonLee wrote 10 December 2012:
"2. This isn't a car, it is YOUR BODY. You will live with the consequences long after the tech/Onc/Nurse etc go home to their families and forget about you. You have final say in what happens and what does not happen to it. Period."
Juli24 ... I am so very sorry about your doggie. My heart hurts for you.
Best wishes to all. I am off to post in "Nipples" about my tattooing experience last week. I got my first ever tattoo and my second and last tattoo. My Primary Care had never examined my reconstructed breasts. He would ask how everything was going with my Plastic Surgeon but never examined me. Well, I had a follow-up on Monday and before I left he said that he wanted to see the tattoos. His mouth dropped open and he turned to Richard saying he could not believe how real they looked.
You know ... if it wasn't for the cancer this would have been an eye-opening, nice ride.
Love, Vicky
0 -
Hubby took me to Little Vinnies Tattoo Shop in Finksburg, MD. Vinnie did the tattooing. Hubby wanted and took pictures.
Vicky
0 -
Coach, all I can say is wow! I had my first TCH chemo yesterday and am just sitting on the coach knitting and reading. I try to walk since I haven’t been able to swim since surgeries. Assumed we wouldn’t walk for a week or so after chemo treatments. But you just inspired me to go for a little walk (feeling jittery after that dose of dexametheson this morning) before lunch and then DH will give me the first Zarxio shot. Then maybe a nap? I have no idea how I will feel for a few days so I might as well walk when I am able. Thanks everyone for all your experiences, I don’t mind the links to studies, I can always not read them if they don’t interest me. But some do.
0 -
jstarling - be sure to hydrate, hydrate, hydrate. In addition to moving/walking and taking in oxygen, it is important to dilute and flush your system. Try to drink your body weight in ounces of water/juice or whatever liquids you can tolerate, over the 24 hours of the day - soup also counts. I would also recommend taking a daily Claritin (not Claritin D) during the time you will be receiving Zarxio. IF you have some take it before the injection and continue for at least several days. The loratadine in Claritin helps with bone pain that can result from the manufacture of excess white cells from the injection (the goal, to keep your WBC up) - the antihistamine combats edema in the bone marrow from this process. Unfortunately, taxanes also come with the potential for bone pain, so mitigating any Zarxio bone pain may be helpful. There have been some studies that looked at the combo of NSIAD with loratadine so taking both may also help. Often the first round is a case of figuring what side effects you will have, and how to best deal with them, but be aware it can be a moving target!
0 -
Thanks Special K for all those good reminders, especially the hydration. I'd echo her vote for getting moving, getting outside if possible. Look for a sign of spring!
Yesterday, first infusion of TPH (taxol, perjeta, herceptin) went fine except really long due to waiting for possible allergic reactions (I had none, whew). Feeling good today, still tired though. And I got funny hairs growing out of all parts of my body now. Most entertaining. I wonder if the taxol will take them too? Wait and see. At least the TPH is on a 3-week period for better recovery.
In a meeting with one of the MOs, I got good news: all the amino acids I had researched to battle the SEs for taxol are quite encouraged (although NOT in their booklets or handouts, which need revision/ updating). So I have added L-glutamine, L-carnitine, the B-12 variant called methyl cobalamine to my daily regime of multi-vitamins (E was also on the list of taxol mediators, but that's in my multi) and Lysine. So no need to be a rebel (at least in this situation).
And I guess I am in the middle regarding Hap's articles: they all have good points, but at the same time the tone can get somewhat like a gloom and doom preacher. It is really hard for people to make huge scale changes; small changes that can be adhered to work best. One that I read: buy a new vegetable each time you go to the grocery and learn to cook it. One that is working for me: replace bad snacks with nuts and vegetable crunchies that are pre-cut. Trail mix is your friend. OK enough from me on this, except listen to your body. True strength is knowing when you aren't strong.
0 -
Thanks, Vicky! Alas, we live over an hour away from a Y (and an hour away from my treatment center), but we have lots of dirt roads we can walk out here in the middle of Nowhere GA (also horribly hot in summertime). I definitely will keep in mind to make changes, if needed, after my first treatment and as treatments go on. I had a complete hysterectomy 7 years ago (4 years after my first DCIS) in hopes of lowering my recurrence of any type of BC (did not take HR therapy, either). Ah well. I still feel better not having all the fibroids and benign cysts down there, regardless.
I'll have to look at the silly comments forum. That might be fun, lol.Juli24, I am so very sorry. I'm a dog person--6 of them. They are the loves of our lives. I'm so sad for you.
Dee
0 -
Juli...I feel for you!! It’s heartbreaking. You’ll cry a lot for awhile, then it will reduce bit by bit. But it’s going to be very upsetting which is normal. If you know in your heart you did the right thing, then that will help. Can you contact the new owners and ask how he’s settling in?
Quick question...any ladies experiencing full body itching on Tamoxifen or their AI? I just started getting really itchy this week. I of course get scared about my liver, but am wondering about meds. I had a detailed liver work up 3 months ago and it was good then. Any thoughts
0 -
posey - ask to have a thyroid function test - not just TSH, to see if your thyroid is working normally. There are some thoughts that there is a link between breast cancer and thyroid function - as the thyroid is hormonal. Itching can be a symptom of hypothyroid, but then again, could just be that your skin is dry from end of winter and Tamoxifen combined.
0 -
hap - may I suggest that you post your links and thoughts about diet, exercise, etc. in another thread more suited to the subject matter, rather than this one which is devoted to TP specific treatment? I think we agree your posts have value - maybe you could put them in the Day to Day Matters threads titled: Bone Health and Bone Loss, Fitness and Getting Back In Shape, Healthy Recipes for Everyday Living, or in the Moving Beyond Breast Cancer threads such as I'm Done With Treatment - Now What? You could also start your own thread on this subject, within either of those All Topics headings, and encourage conversation specifically about these ideas.
0 -
thanks, SpecialK
. I think my thyroid was checked 2-3 months ago, but I could check again. I’ve read that some people do get lots of itching on their hormone therapy. I had a brand change for my AI 6 weeks ago. I now recall having a ridiculously itchy scalp 4 weeks ago. I was thinking one of my kids must have brought home lice lol. But now I’m thinking that might have been an AI reaction. And for sure it could be environmental. A nurse at my cancer centre said it’s likely that’s and I should try a Benadryl. Thank you!0 -
posey - less estrogen from the AI can definitely have an effect on skin and itching - I looked at your sig line and saw Tamoxifen so thought less estrogen may not be the culprit. My DH was just dx'ed with hypothyroid and his skin is itching like crazy - I need to buy stock in the spray lotion he is going through like mad to reach his upper back!
0 -
oh, yes, I should update the signature line...
Yes, upper back is crazy. I rub up against furniture like a horse
0 -
posey - get some spray lotion! That stuff is gold!
0 -
is it specifically anti itch? What brand do you buy
0 -
What helps for heartburn? It just hit like a slap on my chest.
0 -
juli I am so sorry about your doggie! But so glad for a new home!
Shela...being done with treatment was worse for me than being in treatment. I felt lost for almost a year. I'm just coming around and feeling like me again. Great thought on the buddy program. Also, once you are one year out, you can volunteer with the American cancer society. U can drive people to treatments, be a resource, etc.
Posey I'm not itchy so I can help. But I feel you and I hope it gets better!
Hugs!
0 -
posey - not specifically - he likes the Vaseline one, but I also have an Aquaphor one - that one might be more emollient.
jstarling - this is really common, try Zantac, or even TUMS asap, only because it works fast. Tell your MO - heartburn happens because chemo attacks rapidly dividing cells and the GI tract - starting at your mouth - is lined with this type of cell. Your doc or center can help you with Rx strength if OTC isn't enough. Some try omeprazole - like Prilosec, but others need Rx like Protonix, or Carafate.
0 -
hap, please share your wonderful kindness and encouragement here on this thread. Please post the other on another thread--I am sure it would be a popular thread and many people would like to post, learn etc. I've been on this thread since the day TonLee started it and it is so faraway from what is was. I totally agree with Special K's suggestion. I feel as though I am losing my 'home thread' and I've checked this thread every day since it was started.
0 -
Hi everybody. After weeks of waiting for results from the culture and approval from insurance company, I started two antibiotics yesterday, Bactrim and Syvextro. I'm hoping to kick this slow growing and nasty bug to the curb very soon. I am so happy that I did not have to go the iv antibiotic route. And I maybe able to get my port removed soon. Hurrah. Thanks again for all the encouragement and well wishes. This is a special place. No one can really understand the trials of triple positive unless you've been there. Today, I feel very lucky to be alive and will make the day count.
0 -
suburbs - glad you have the right meds now, I sure hope you start to feel better soon and they do the job completely! What a struggle!
0 -
Suburbs ... great news!
Possey ... My head itched on one of the generic Arimidex I took. I thought I was going to claw my scapl off. Much better now with the brand name.
SpecialK ... as usual you are spot on about hydrating and thyroid checks. You DH may be interested in Armor Thyroid. I find it better than the synthetic drug.
Tresjoli2 ... Not sure I am lost. I feel so free these days to live like I want too. Some days I don't accomplish a lot and that is A-OK!
For everyone who celebrates Easter ... Happy Easter. It roasted lamb with garlic in our home.
Vicky
0 -
coach - you had mentioned that when we met - he was newly diagnosed at that point. I have suggested Armor to him and he needs an appt to discuss dose or med adjustment as he is finding the improved feeling is not lasting throughout the day. Thoughts? Also, I want to come to your house for some lamb, my mom cooked leg of lamb often, she was British and my dad was from Australia.
0
