TRIPLE POSITIVE GROUP
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spring has sprung in NE Florida...by koi pond...enjoy
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Tresjoli - thinking of you.
LaughingGull - I had H only and my onc said he "felt obligated to tell me about neratnib". Not sure why he worded it that way. I asked directly "but are you recommending it" and he looked away and said yes. I have no idea what that was all about. Maybe he was hedging his bets so I'm not too upset if my insurance doesn't approve it. I'm going to give it a shot, and if it's terrible I'll stop taking it. I feel the same way you do about wanting to do everything to prevent recurrence. If I have done everything I can and there's nothing more I can do, then there's nothing to worry about. If I don't do everything I can do, I'll stress out worrying that I should have done more. I feel like your MO should at least try to get your insurance to pay for it, and if they won't at least write you the prescription and you can decide for yourself if you want to fill it. I mean, if you go metastatic, your whole life changes but he just has one unpleasant conversation and goes home to eat dinner with his wife like any other day. So he should not be so dismissive of you. Try to get to a teaching hospital or even better an NCI cancer center for a second opinion. If all else fails, you can get an online second opinion from Cleveland Clinic. Insurance doesn't pay for it but IIRC it was around $1k, and they review all your pathology, etc (though I feel like for $1k you and your hubby could just take a long weekend trip to an NCI center). BTW, I will not take the nerlynx if my insurance won't pay for it. I'm not convinced of the benefit. I read the stats on it but I feel like their statistical methods were questionable.
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Hi, Paloma. Sorry to hear you're having a difficult time. My MO gave me at least 4 prescriptions as next steps up from OTC meds for both diarrhea and nausea. I rarely needed them, but was glad to have a full arsenal just in case.
10 days is a long time. You should be feeling better by now. I suggest calling your MO and asking for help; that is what they are there for.
Meanwhile, make sure you are drinking lots of water. I found myself craving juicy fruits such as melon, pineapple and oranges and ate those when not much else was appealing.
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paloma - RX anti-D loperamide, lomotil, and there are a couple of meds that are not primary anti-D meds, but seem to work for some people - budesonide and colestipol. I would eat a BRAT diet - bananas, rice, apples, toast. Stay away from anything spicy or with a lot of fiber. You might also want to get an IV of fluids, you must be dehydrated by now - sorry! I had the big D for about the first 10 days after each round, then it dissipated and I was good for the next 10 days before the next round.
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Thank you Nanette, Magari & SpecialK! It's been about 6 days since the big D set in. I tried pepto for the first couple of days, then switched to Imodium. The np said to start with Imodium first next time & catch it sooner. I've been mostly eating light, but the second I dip my toe into anything else (like 3 bites of a carnitas quesadilla) I'm running for la toilette. Luckily it's not “all water", so I don't feel dehydrated. I'm hoping it will subside sooner than later. I really want pizza
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Hi Laughing, first of all I feel bad that you have to deal with a MO who is dismissive, nobody going through what we are going through should deal with that.
I saw my MO few hours ago and nerlynx was a major topic again. Ironically, he is pushing me to go for it as like you, I didn't achieve complete Response after neoadjuvant treatment so he wants to give it everything on the table and more if possible. He also wants to get a PET scan 2 or 3 months after HP which is not the standard.
I was trying to talk my way out of it but he said no. The only thing he agreed on was me taking a break after HP is done by June 6th before I start nerlynx and that is only because I said I needed a break for a bit before going forward with more treatment. I guess he had to bulge so I can take nerlynx. I would change my MO if I were you but I don't know your situation.
Personally I would lean towards nerlynx although you are a little older than I am. I will be 40 in August.
Try and get a second opinion, I wish you piece of mind with whatever you decide to do. My MO says you can take nerlynx anytime till 6 months after H.
Tres, I am a praying woman and I will put you in my prayers.
Love to everyone ❤️
Princess
Laughing,You asked which cancer center, I use MD Anderson at Cooper, New Jersey
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Be your own advocate and definitely get a second opinion. You have a right to your questions and physician who keeps up with the latest research as it certainly seems to be changing quickly. My primary sent me to my team and the communication has been great.
If your primary isn't helpful, what about talking to other cancer patients for suggestions about docs. Is there a "bosom buddies" or other support group near you that could give you a recommendation? My BS gave me a list of BC support groups in the vicinity. I'm of the age where everyone knows someone who has recently been diagnosed and the reputations get around pretty fast.
In the end, WE each get to decide what level of SE's versus what level of risk is acceptable, not our physicians. Also, in my opinion, your physician should fight for you to get your insurance company to cover what you need rather than just dismissing it with "your insurance company won't cover it." My husband, who is a retired general surgeon (do they still have those), has on more than one occasion told the person on the insurance line that if they wanted a patient discharged before he thought they were ready that they would have to come in and write the order.
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Paloma. Feeling your misery, I was able to eat plain white English muffins or Bagels to bind things up....
Otherwise try the brat (bananas, rice, applesauce and toast). Good luc
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Tresjoli--can you quick book a week-long cruise?
No really, the first thing I thought of was try to distract yourself. Sending all kinds of good vibes your way for quick biopsy results and good news.0 -
LaughingGull you need a new MO immediatly. Mine comes in, sits down and says "what can I do for you?" "how are you feeling?" and answers any questions I have, even some I know he thinks are probably stupid haha! If yours doesn't do that, get a new one and don't feel bad about it. You have to have a MO who is as invested in saving your life as you are!
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Tres, Please keep us posted and stay positive. Would you consider just getting rid of your girl parts and letting this be over? I ask because I know that can be a hard decision with all you've been thru with BC but maybe it is time to consider.
Warmly, Vicky
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Thank you ladies for your support. After sleeping on it I am realizing I need a new oncologist, which is both very sad and very hard for me to do -I feel devastated. I trusted this guy with my life and I have been happy with him. But communication went downhill after my surgery, when my uneasiness with my high-risk situation started to be a big concern for me and I didnt find him responsive. And things are at a point where this is not sustainable. I am willing to accept Nerlynx is not for me, but I cannot accept a "because I say so" treatment.
hapa, I agree with you. I also find the methods questionable in the Nerlynx study, but as you I need to leave no stone unturned and be at peace with my outlook. Many many thanks for your words.
Princess me, what an irony that you are in the exact opposite situation. You got both Herceptin and Perjeta, correct? For how long, if you dont mind my asking.
Taco, very useful suggestions, thanks from the bottom of my heart.
And thank you big peaches. I feel so alone after seeing my onc lately.
To the big D question, what never fails me is 12h of not eating (night plus a few more hours before and after), drinking only lemonade with baking soda and sugar during this period, then moving on to rice only. Once I tolerate rice only, move to rice + boiled carrot. Once you tolerate that, add boiled chicken without skin. Then banana and on and on, slowly.
Best wishes to everybody. Have a great weekend.
Love and peace
LaughingGull
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And a shoutout to tresjoli...keep busy and distracted during the weekend, you will get your results before you know it. Keep in mind that the biopsy indicates that they are doing a thorough job of looking at things, not indicative that there is anything wrong.
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laughing ofcourse I don't mind you asking. Perjeta was included during my 9th H. So that means 12 months of H and 6 months of P.
Again, I had residual disease after neo adjuvant chemotherapy. The tumors didn't respond quite well to treatment.
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Paloma1211:
You can try smaller meals, and also there might be something in one of the foods you are eating that is contributing to it.
Iwould get stomach cramping within seconds of eating Swanson's chicken broth.
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Not sure this is a help, but I had neoadjunct therapy that included both Herceptin and Perjeta for 6 cycles. My adjunct therapy is both Herceptin and Perjeta for an additional 11 cycles so I will have gotten H&P for a total of one year (17 cycles). My path report came back with no cancer remaining in breast or nodes after chemo and neoadjunct therapy. The reason my OC continued Perjeta was because I had scaring in one node which typically indicates there were cancer cells in the node at some point. This was apparently sufficient reasoning to continue Perjeta and insurance is covering cost.0 -
LaughingGull, I hear you about being so devastated that you now have to find a new oncologist for this part of your treatment journey. Could it be that you had the absolute best oncologist for the first part of your oncology treatment and there is a wonderful new oncologist for this part of your treatment? So disappointing that it couldn't be the same doc. Don't know is this makes any sense but you are in my thoughts. Hope you have a good weekend.
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Cowgirl very nicely said!
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Paloma 1211 I accidentally discovered during active treatment that avoiding dairy made a huge difference with the big D. Apparently chemo can make some people temporarily lactose intolerant. I have continued to eliminate as much dairy as I can because of all the hormones and drugs pumped into the dairy cows. Cheese was a staple prior to the cancer but I can’t justify eating it now except on a rare occasion, because for me (everyone is different) it does not make sense to ingest all the hormones when I am taking tamoxifen to block my own. I use to use cheese like meat in my meals and really wonder if my excessive consumption contributed. It was a night and day difference though for me during treatment when I stopped. Does not cost anything to try. Good luck with the rest of treatment.
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CCNC, actually, when you take Tamoxifen, the effects of hormones are blocked. Not the production of your hormones. (as opposed to an AI) So if you take Tamoxifen, it blocks the hormones from having an effect on the tissues - whether your hormones or hormones digested with food.
BTW do you maybe have any information regarding the amounts of hormones in dairy and in different types of dairy (milk, butter, kefir, yoghurt, skyr, cheese etc. etc.). I were not able to find anything. I even considered sending some samples to laboratory to find out 🙂 but haven't done that so far. Does anybody know how to find out?
Tresjoli, thinking of you!!
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Laughing ... Staying or leaving an Oncologist is a lot like dating. You probably knew in your gut when there would be no late night kiss when you dated someone not working out.
Have a great weekend everyone!
Vicky
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Jaboo
I’m just reducing my exposure overall to meat and dairy. I ate a lot of cheese and if cancer was ever shown to be diet related that is the one thing I could point to in my diet that was in excess. I just feel better lowering my exposure to all the chemicals and drugs that get pumped into animals today in the mass farming. I usually only ate chicken on occasion before, so giving up meat was not a big deal. The cheese was tough and I don’t plan to be on tamoxifen the entire time. I had to have a full hysterectomy due to the tamoxifen affecting my uterine lining. I am scared to do the ai. Onc said to take tamoxifen for a couple then switch to ai. Regardless of the hormones being blocked or the effects I’m still not adding any extra to my body just doing what feels right for me and my peace of mind. Whether logical or not it makes me feel better
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CCNC I am totally with you on the change of diet thing and I am on Al.
I have switched from cow milk to almond. Regular yogurt to Greek, honey to stevia, stopped sugar over a decade ago before cancer (who knows if that was the reason why my 4 years old tumor was only stage 2 when finally dxed). I no longer take soda, I stopped meat and do organic chicken and fish, vegetable oil to extra virgin olive oil, more greens and fruits. I think it's not so much sacrifice as long as the monster C is kept at bay plus my it has kept my weight same for over a year now (144/5lbs) and I am not even exercising at all and my skin? It's been glowing since I adjusted my diet.
Whatever works for me might not be what someone else is interested in and that's okay. I love the piece of mind it gives me.
Happy weekend everyone ❤️
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CCNC I am totally with you on the change of diet thing and I am on Al.
I have switched from cow milk to almond. Regular yogurt to Greek, honey to stevia, stopped sugar over a decade ago before cancer (who knows if that was the reason why my 4 years old tumor was only stage 2 when finally dxed). I no longer take soda, I stopped meat and do organic chicken and fish, vegetable oil to extra virgin olive oil, more greens and fruits. I think it’s not so much sacrifice as long as the monster C is kept at bay plus my it has kept my weight same for over a year now (144/5lbs) and I am not even exercising at all and my skin? It’s been glowing since I adjusted my diet.
Whatever works for me might not be what someone else is interested in and that’s okay. I love the pieceof mind it gives me.
Happy weekend everyone ❤️
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Many thanks to LaughingGull, CCNC, WC3 and JStarling. Did the BRAT diet and got the big D under control. Gotta catch it sooner next time. Definitely staying away from all things dairy. The moment yogurt passed my lips a few days ago, i knew we were not friends.
Now, I’m onto scalp acne. I still have my hair (cycle 1, day 12 - TCHP), though I assume I won’t have it for long. Not sure if I need to do anything about it - it’s been a couple of days and I have 6-8 spots. Anyone else dealt with this?
Wishing everyone a peaceful weekend
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CCNC - Thank you for your answer, I completelly understand and support that you do what you feel is right for you. I meant my question really as a question, not as a suggestion of something. Since my diagnosis, I am trying to find out about dairy, but haven't been able to. That's why I asked. Of course there are various chemicals used at mass farming, but that's just not the case here. We get our meat at a nearby farm, the animals are grazing happily and I see them out of my window on the opposite slopes of the valley. When I was a kid we had a cow - and I really wonder what level of hormones does such milk have. This is just to explain why I asked...
PrincessMeg - your adjustments of diet sound very similar to mine (or what I try to achieve, not there yet with sugar). As a precaution (untill I find out more), I have dropped butter and yoghurt and am now eating greek yoghurt/skyr (basically the same). The meat we eat is always organic, grass fed. I try to drop sugar but that is very hard for me, but I have reduced it massivelly. Not restricting honey, since we have bees and our own honey (and we live in a nature reservation, so no poisoned fields anywhere near). My weight is now back where it was my whole life (after I gained 6pounds on chemo), BMI under 20. Fruits and vegetables plenty, part of it home-grown. Your changes are great and I wish I would be able to cut down all sugar like you did.
Should anybody have some information regarding hormone levels in milk (organic), I would be greatful if you could share...
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Laughing gull & tres Jolie & to those newcomers
Sorry y’all are going through this angst and hope you stay healthy. Thank you to all the ladies on this forum who reach out and uplift us all.
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paloma1211 I had TCHP chemo 18 months ago. I didn’t lose my hair until just before the second round. I got tne acne after the first round but never again. I had severe diarrhea though and lost 30 lbs through the 6 cycles. I was taking 9 Imodium a day. Food stayed in my body about 30 min tops no matter what it was. Diarrhea is the #1 complaint about perjeta. My doc said make it through the 6 cycles and then we’ll just do Herceptin. I was prescribed lomotil which is a narcotic for diarrhea. It helped a little bit but after awhile I was taking so much it affected my swallowing. After my 6th I got a shot of sandostatin and that worked. I started getting saline infusions between treatments to help with the dehydration. No food elimination or brat diets did anythi ng. My mri anf sonogram said everything was gone s i had a lumpectomy. Cancer was still there so I had to go back and have a mastectomy. I changed oncologists after chemo and my new onc said he would have stopped after 4 rounds. He said 4 rounds are just as good as 6.
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LTWJ, thank you so much for sharing your experience. Yes, the big D is pretty awful. I’m hoping to get it in check a little sooner this round. I’m hoping it won’t get worse. I’m glad this is behind you, and I look forward to one day being on the other side. Thank you again for sharing
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Yeah, the big D can be most inconvienent that's for sure, I never go far without my Imodium!
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