Starting Chemo in December 2016
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I saw you were triple negative. I'm not familiar with that drug. When you said you were back on chemo, I was thinking that something had happened - recurrence or metastasis or something. I'm glad there's something that you can take then.
I'm sure it's very hard to make so many changes. I really haven't made any. I guess I still feel like a lot of this is the luck of the draw and unless something is proven to cause BC then ... I don't know. I'm kind of an "everything in moderation" sort of person.
I hope that you can find some balance so you're not overexerting yourself. That can't be good, either! ;-)
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Hanging in there- I hope that the new medicine will be the new miracle drug. Yes, I think you should take it a bit easier on you high energy days and see if that helps with the 'crash' days. It is hard, I know for me on a good day I would overdo because there were things that needed to be done. I am not tired like chemo tired or radiation tired, but I get tired easier than before and don't have the energy or concentration that I used to have. I don't know if it will come back completely or I adjust to this as my new normal.
Hope you all have a happy day!
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I am TNBC and PALB gene positive.
Had very bad side effects with Aromosin & Arimidex. I had double mastectomy, chemo.
Not familiar with this X drug.
My understanding is that traditional AI's don't really help with TNBC. Chemo supposed to be best treatment.
I feel like going off my AI at this point (Arimidex) because I have poor appetite, weight gain, joint & muscle pain, fatigue. I find it difficult to eat well & exercise while on AI's. When I go off (for a week) I feel so much better.
Catch-22 much?
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SeeSwee6 - I am not familiar with the side effects for Arimidex, but if you are having that many problems you should tell your doctor he/she may have something else to offer you.
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Here is some information on Xeloda (that is the brand name).
http://www.nejm.org/doi/full/10.1056/NEJMoa1612645
That is summary, but my doctor gave me the whole article (printout)
This article on June 1, 2017 made using Xeloda (pill chemo) standard for some TNBC patients. It is a 21 day cycle. Fourteen days on Xeloda and 7 days off. Patients either do 6 or 8 cycles.
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Hey everyone - How's everyone doing? It's been a year since we started chemo! I should be finished with Herceptin by now, but due to skipping one and postponing another - I'm not done until next month.
I had kind of a hard time around the anniversary of the BC diagnosis. Just all the weight that it carried. I've started seeing a counselor and will be starting a fitness and nutrition class next month.
I was on Tamoxifen for three months and quit due to SE's. I'll probably try again at a lower dose once I'm feeling more normal and not taking anything. It's hard to know what causes what when you're on a number of things.
Anyway - just thinking of you all and the help you've been along the way. Best wishes for a lovely holiday season and better year ahead!
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NotVeryBrave- This has been a really crazy year. We find ourselves where we never imagined we would be. My last chemo (TCHP) was at the end of March, but my doctor has me staying on Herceptin until the end of March 2018. Then he wants me to take Nerlynx when I am done with Herceptin. I don't know much about it I think it is fairly new. Just keep plugging along, I think when we started I thought there would be an ending, it looks like I am here for the long haul.
amy
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Hello there fellow chemo buddies
I'm just checking in. Finished TCHP March 30th and my last Herceptin was November 2017. I had a one month break and started Neratinib/Nerlynx on December 10th. So far so good. I'm chugging along, but I feel very much back to my old self and finally was able to start my workouts (easing into it) again this week.
Hope you all are doing well and keeping strong.
~Dee
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Hi dcdrogers. I finished TCHP March 23, 2017 - and won't be done with Herceptin till March this year. I only have 3 more to go. Then I will be taking Neratinib/Nerlynx like you. It sounds like you are doing well with this. I am not glad that you have to take it, but I am glad to see someone on it so I can see how you are doing. I won't be too far behind you.
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I finished IV chemo March 13, 2017. After surgery and radiation, I'm at the end of pill chemo Xeloda. I'm taking the most I can to hopefully prevent recurrence. I don't have the same options those with hormone breast cancer have.
I've changed my diet to vegan, removed most processed food, but still I eat cereal, vegan waffles, etc. In the last week I have tried to reduce my added sugar to very low. Removing milk and cheese was very hard, I just removed eggs about 3 weeks ago and I can't seem to give up sugar. I gave away all my vegan dark chocolate (w/almonds - Trader Joes) and a week later, I found myself buying a different vegan dark chocolate bar. I chopped it into 12 pieces and hope to eat no more than 3 a week. Ug I mostly gave up Diet Coke. I am addicted to both sugar and Diet Coke. So I decided to have 1 Diet Coke a month. I already had mine for February.
I would be exercising everyday, except one of the side effects of Xeloda is Hand Foot Syndrome. It makes my hands and feet (feet are worse) very tender. I put on Urea40% several times a day, but now as I am about to start my last cycle of Xeloda, I'm just trying to stay off my feet as much as possible. Tender is OK, but when it goes to pain, that is a problem, so I'm trying to keep my feet from going to pain. I took up "Gentle Yoga" and "Pink Ribbon Pilates" at a cancer support center as well as attending a spiritual meditation and healing class. I've was not able to attend Yoga and Pilates last week and probably will not until I'm off Xeloda. This final cycle is the worse.
I lost 30 lbs between Oct 2016 (I started a diet 2 weeks before I was diagnosed) and July 2017. So it was not all chemo. But I didn't try to diet at all after I was diagnosed. I just seemed to stabilize in July last year. I've lost a little more than 15% of my body weight!
Energy came back about 4 days ago (not all, but a substantial amount. )I still need to lose 10-15 more pounds, but I've dropped 2 pant sizes.
There is a problem with having my energy come back and having HF syndrome such that I have to reduce my walking to essential takes. Since this is the last cycle, the SE's are worse as I've been on the drug since August 2017.
I started taking a massive amount of Vitamin D every week and I take aspirin everyday to possibly prevent recurrent cancer. (I've been doing some reading).
When I lost the weight, I no longer have high blood pressure, so I'm off that med. I'm trying to figure out a survival strategy.
I would love to hear what what others are doing or have done to try to keep cancer from coming back. Or were you already fit and ate an excellent diet of whole grains and fruits and vegetables. I've made a lot of changes and it has been very hard.
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Hanging- You have really succeeded in a lot of changes in your eating. I would have a hard time giving up eggs and cheese. I am trying to eat healthier, I never was a soda-pop drinker and not too bad with sweets. My hardest part is carbs. I love everything carb. I actually have to avoid mac & cheese, because it is like a drug to me and I can't stop after a little bit. I need to lose about 30-40 pounds and my exercise is mostly just walking. I am very lucky that I work by a park and have been walking there every day before I go home and working more veg and fruit in my diet. I don't think I would ever be as disciplined as you, but I do believe I have to do my part to fight a reoccurrence of this dreaded stuff. I take vitamin D, but I never heard about the aspirin- I will have to look it up.
Best to you on all your changes. I am going to use you for my inspiration.
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mistyeyes
http://www.breastcancer.org/research-news/link-between-aspirin-and-lower-risk
You can get all the way to the real study it said anti-platelet in the title
I love carbos too
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