TRIPLE POSITIVE GROUP

deni1661

Hapb - I wish you peace with whatever decision you make regarding treatment. I agree with Shelabela and others that this decision is a tough one we each have to make but in the end it is truly up to each individual. For me personally, I learned to rely on my doctors instead of the tons of information available online or the advice from well-meaning friends and family. Listen to your gut and more importantly pray to God for guidance. My faith in God has helped me tremendously in not trying to control the future. I do not know if or when my cancer will come back but I have learned not to waste precious time or energy worrying about tomorrow. I enjoy each day as it comes and turn my worry over to God. I rarely think about recurrence and focus instead on all that I have to be thankful for today!

In response to nutrition, I gave up just about all food when I was first diagnosed because I was so scared that whatever I put in my mouth would make the cancer grow and spread. I had terrible eating habits and drank what I now realize was way to many cocktails! I read everything possible about cancer and nutrition but in the end decided that an 80/20 rule works best for me. I strive for eating a plant based, no dairy-beef-sugar-gluten-alcohol-processed meats-artificial foods diet 80% of the time and allow myself "treats" 20% of the time. I find desserts, ice cream, donuts, etc. too sweet now and I get a stomach ache when I eat beef or dairy. That helps me stay away from the bad stuff lol. My son told me something that has stuck with me more than anything I read about cancer and nutrition: my old eating and drinking habits plus a high stress job and lifestyle created the perfect environment in my body for cancer to grow. Making any changes to your diet and lifestyle has to produce the opposite effect, right? I lost 40 pounds and kept it off and eliminated stress from my life. I don't want to be so strict with my diet that I can't enjoy life otherwise what's the point. This is what works for me and I have gotten rid of the anxiety that comes with "will eating this cause my cancer to grow or come back?".

Lita, I agree with your approach that you'll draw your own conclusions and come up with your own plan for nutrition - we all have to make choices that are right for us. I am always reading articles or books on cancer nutrition because it can't hurt to expand our learning and try new things that might boost our immunity. Hapb - thanks for the list of books!

deni1661

Hapb - I wish you peace with whatever decision you make regarding treatment. I agree with Shelabela and others that this decision is a tough one we each have to make but in the end it is truly up to each individual. For me personally, I learned to rely on my doctors instead of the tons of information available online or the advice from well-meaning friends and family. Listen to your gut and more importantly pray to God for guidance. My faith in God has helped me tremendously in not trying to control the future. I do not know if or when my cancer will come back but I have learned not to waste precious time or energy worrying about tomorrow. I enjoy each day as it comes and turn my worry over to God. I rarely think about recurrence and focus instead on all that I have to be thankful for today!

In response to nutrition, I gave up just about all food when I was first diagnosed because I was so scared that whatever I put in my mouth would make the cancer grow and spread. I had terrible eating habits and drank what I now realize was way to many cocktails! I read everything possible about cancer and nutrition but in the end decided that an 80/20 rule works best for me. I strive for eating a plant based, no dairy-beef-sugar-gluten-alcohol-processed meats-artificial foods diet 80% of the time and allow myself "treats" 20% of the time. I find desserts, ice cream, donuts, etc. too sweet now and I get a stomach ache when I eat beef or dairy. That helps me stay away from the bad stuff lol. My son told me something that has stuck with me more than anything I read about cancer and nutrition: my old eating and drinking habits plus a high stress job and lifestyle created the perfect environment in my body for cancer to grow. Making any changes to your diet and lifestyle has to produce the opposite effect, right? I lost 40 pounds and kept it off and eliminated stress from my life. I don't want to be so strict with my diet that I can't enjoy life otherwise what's the point. This is what works for me and I have gotten rid of the anxiety that comes with "will eating this cause my cancer to grow or come back?".

Lita, I agree with your approach that you'll draw your own conclusions and come up with your own plan for nutrition - we all have to make choices that are right for us. I am always reading articles or books on cancer nutrition because it can't hurt to expand our learning and try new things that might boost our immunity. Hapb - thanks for the list of books!

deni1661

Hapb - I agree, I find it fun to learn about nutrition too. Learning new things is always a good thing and I'm learning so much through this community. It sounds like we've been living the same lifestyle with stressful jobs, little sleep, and trying to do way more than we should. Unfortunately I got caught up in all the convenience foods and terrible eating habits as a divorced working mom. I can't believe the crap I fed to my kids. Thankfully my son is a chef and my daughter eats only organic food so they changed their eating habits for the good. Now it's my turn! I feel so much better since I've changed what I eat and honestly, whenever I eat the treat foods I don't feel as good.

Soxfan75

Hi Ladies - I don't post here often, but I've been following the thread for quite some time. I just finished my last chemo 11 days ago and I noticed today that I have a lump above my collar bone. I had four lymph nodes removed back in February and two of them came back positive for microscopic amounts of cancer. Is it possible for the cancer to have spread to the superclavicular node and be the size of a walnut in just five months? I've also experienced some lightheadedness in the last three weeks that seems to be more pronounced when I'm tired or when I move my head too quickly. It was worse 2-3 weeks ago and seems to have gotten better. I'm not sure if the two are related, but thought I'd include it. Any insight is appreciated.

I'm waiting for the doctor's to return my call, but the waiting is excruciating. I've never been so scared.

Soxfan75

Thanks HapB. My temp is 99.0 so maybe you're right and I do have an infection somewhere. I have a CT scan scheduled for Thursday as part of my treatment planning for radiation. Will that tell them anything?

ElaineTherese

Soxfan75,

Yes, your CT scan could be informative. Ask your radiation oncologist about that particular spot. In the meantime, it's a good thing you called your doctor. HapB is right that it could be an infection, and having a 99 degree temperature could be a sign of that. But, it never hurts to be vigilant and to keep your doctor informed!

Soxfan75

HapB - I haven't seen my GP since right after my diagnosis in January. I spoke with the cancer center a few minutes ago and my MO is going to see me on Thursday when I have my CT scan. They believe it's probably my body reacting to an infection of some kind, but they're going to be cautious and check me just in case.

ElaineThere - I'll definitely mention it to my RO for sure. It can't hurt to have a second set of eyes take a look at it.

Tresjoli2

anyone read the new BCO article on nerlynx? Just approved for use after herceptin to help prevent recurrance? Did I read that right?

BellasMomToo

HapB, I see your point. I don't know if this new drug is worth the SEs for me either. I assume I'll be eligible for it when I complete my one year of Herceptin in October. I am so looking forward to finishing my treatment -- the thought of continuing with something else doesn't appeal to me. I'll see what my MO thinks when I see her again in a couple of months.

ElaineTherese

BellasMomToo,

I think I could do without the severe diarrhea experienced by 40% of the women, too!

Ugh.

ElaineTherese

KB870,

Yes, hormonal therapy also has a lot of side-effects for a small increase in survival rates. Fortunately, I find Aromasin (exestamane) tolerable. If my MO suggested Nerlynx, I would certainly think about it and maybe try it. I could always hope that I was part of the 60% that didn't get severe diarrhea. One of the best things about daily pills is that you can try them, and if they're intolerable, you can simply stop taking them.

moodyblues

Elainethere:  Love that your looking at the postitive when you said "I could always hope that I was part of the 60% that didn't get severe diarrhea." 

When I read about the percentages of reoccurrence in triple positive women, I like to think I will be in the higher percentage of people who don't!

Bella'smom:  I know exactly how you feel, I am ready for this treatment to be over and wouldn't look forward to something else.  Granted, I would do it if necessary, but I will cross that bridge when I get to it!

HapB:  Liver damage is def something to consider!

deni1661

Saw my MO today and asked for his opinion on the Nerlynx. He thinks the side effects are too severe for the low percent advantage. He would not recommend it to his patients. Also, the study didn't include Perjeta. The HP protocol has better results with less severe SEs. In his opinion.

Herceptin and tailbone pain - in my case he thinks it started with the Arimidix and he's perplexed as to why it's still bothering me. I only have 3 more HP infusions so if it goes away when I'm done then we'll know for sure!

Hope everyone is doing well....hugs and have a peaceful day

Tresjoli2

very interesting deni...it dose seem to be very little benefit with nasty side effects...

SpecialK

hap - this is the study abstract, with the actual numbers, and the side effects sussed out.

http://thelancet.com/journals/lanonc/article/PIIS1470-2045%2815%2900551-3/fulltext

SpecialK

hap - it appears the way they are currently approaching use is to administer this after Herceptin as a recurrence prevention, not sure it would be used in place of, which is more of an active systemic treatment. A bit apples and oranges, perhaps. This is more like use of anti-hormonals to control the estrogen receptor fueling, this would be to control the Her2 overexpression in a more extended adjuvant manner.

tadover

I just came off of a clinical trial for Nerlynx in February. I knew I was getting the actual drug and not a placebo, they were mostly trying to figure out what dosage of anti-diarrhea meds to give. I really didn't have much trouble tolerating it and didn't have many diarrhea episodes. As soon as I could completely stop them, I did. But the nurse coordinator told me some folks wouldn't even try to go without the anti-diarrhea meds. So basically it just seemed to me to be like all the other treatments and meds we've taken, where we vary so much in side effects. I saw it as just another tool to have in my bag to fight reoccurrence. As long as I felt okay and tolerated it okay, I was fine with taking it. I figured if it didn't help me, maybe it would help someone else down the line. And also I figured at least I would get another year of being a little more closely monitored and screened. Now I'm on an every 4 month check with my MO for blood work and checkup.

Soxfan75

I met with my breast surgeon and he did an ultrasound on the lump above my collarbone. He said he saw calcification and when I asked him what it could be, he said it's very likely metastatic breast cancer, metastatic thyroid cancer, or lymphoma. Not exactly the news I wanted to hear. When I asked him if it could be anything benign, he said it's possible that there were cancer cells in that lymph node the whole time and the chemo that I just went through (TCHP) killed it. He said the body's reaction to the dead cancer cells could be to wrap it in scar tissue. I obviously want to believe the latter , but I'm concerned because he never mentioned it initially. I did have a biopsy done on it while I was there, but i won't get the results until Tuesday. Has anyone ever heard an explanation like that before about dead cancer cells? Is it possible for a tumor to grow while on chemo?

coachvicky

Keeping you in my prayers, Soxfan75.

Also, I have heard from Denise in TN. She wanted all to know she is doing well.

Coach Vicky

ElaineTherese

Soxfan75,

I have heard the "dead cancer cells" explanation before. Some women go through neoadjuvant chemo, and their lump doesn't seem to shrink appreciably. However, when they have their lumpectomy/mastectomy, their doctors discover that their lump was nothing but dead cancer cells by the time for surgery.

It is possible for cancer to grow during chemo. Sometimes, the prescribed chemo does not work for your particular variant of cancer. This is one of the arguments for neoadjuvant chemo -- it may show that the chemo in question isn't working.

Hoping that you get good news from your biopsy!

P.S. I've been a Sox fan since 1975 as well. (I was a Dwight Evans girl, but my brother loved Jim Rice.) Makes me feel old....

BucsGirl

Hi Tadover,

Thanks for sharing that! I totally agree with you. It never hurts to add another tool to lessen the chance of reoccurrence. Thanks for being a part of that clinical trial. I'll be asking about this study at my next visit.

Soxfan75

Thank you ladies for the information. One thing I forgot to mention because I just remembered it myself was that yesterday I had a CT scan as part of my radiation treatment planning. I mentioned the lump to the radiation oncologist and it did show up on the CT scan. He then went and looked at my scan from after my surgery but before I started chemo and he said it was on that scan as well. If it was cancer at that time, wouldn't it have shown up on the MRI that was done? Is it possible they missed it? I was thinking that if it was obvious on the CT scan, wouldn't it be obvious on the MRI?

ElaineTherese

Soxfan75,

Did you just have a breast MRI or a full-body MRI? A breast MRI focuses on the breasts and axillary lymph nodes.

Soxfan75

ElaineTherese - I don't recall, but I remember my MO mentioning two spots on my liver that she didn't believe was cancer. That must have been a full body MRI, right?

ElaineTherese

SoxFan75,

A breast MRI is done on your stomach with your boobs hanging down; you hear lots of loud noises and have to stay very still. Other MRIs are done on your back, as are PET scans. But, with PET scans, there are no loud noises; you just lay there very still.

Soxfan75

ElaineTherese - It was on my stomach so it must have been just a breast MRI. I guess I'm just grasping at straws at this point.

Suburbs

Soxfan75, I understand your anxiety. The waiting is the hardest part. We have all been there. I hope you can relax this weekend and be rested up to receive a good pathology report. Sending positive thoughts.

Coach Vicky, thank you for the update on Denise. Nothing easy about embarking on the 6 stop TCHP journey. Good to know she is doing ok.

AliceAgnes

I'm pulling for you, Soxfan.

Kattis894

Hallo all, haven´t been here for awhile...and that is good news...I use to be here all nights long 6 months ago and it helped a lot...remember most women that has gone threw it and can tell you; You can do it! are not lingering around anymore, they are out living life. A word of courage for all those just going threw chemo and are in the mist of treatment. I went to my yearly onc meeting yesterday. One year has past and I am so much stronger today even though I still receive herceptin (got 3 more to go). He told me they would do a check once I am done with that with ultrasound. Now starts year 2, also a crucial year for reaccurances, he reminded me to check my scar and my armpits for lumps every other week moving forward. Also if I get some swelling on my legs (not sure why), in that case I should call asap. Yes, it is an aggressive form of cancer and I got reminded of it, but as time goes I can assure the worry lessens each day a little more and life can slowly start again. Saying that I have been an extreme worrier to the point of almost going crazy with it. Some things I am noticing after this year is fatigue, but I am trying to walk more and getting my exercise routine in order is my next goal. Finding myself having more calmness to think about diet and things that would make my life more healthy. During treatment I could not even walk up a few stairs without loosing my breath. Normal. Pain in bones. Normal. It takes time for all this poison to leave the body, it takes time to recuperate. People say it is not a sprint but a marathon, that is true. It gets better and I thank all those who has gone before me. Life has changed for ever. What use to be important feels ridiculous. I am changing my job. All power to you all and thank you for being there in my darkest moments.

kae_md99

hi all,

i am one week postop. main issue is tightness and heaviness. i have asthma and its hard to breath sometimes,hence i am still using pain meds and my asthma inhaler. not much appetite but taking protein boost.had herceptin only infusion yesterday and reflux is acting up. was told SNB were negative for cancer. willget full pathology report on tuesday when i follow up .drains hopefully will be out friday. took first shower today after wound vac removal yesterday and it felt good. God bless to all. it is a marathon.happy weekend