Calling all TNs

Leealice

Thanks, I'm going to download the fooducate app.

Question about Ezekiel bread. I just looked at it yesterday. It's in the freezer section at my grocery store. Do u keep it frozen and thaw/toast a slice when you want it. When it thaws is it soft? Usually when I have eaten previously frozen bread it taste stale

ALHusband

In an attempt to reduce my wife's risk of recurrence, we have kind of reinvented our diet. It's low carb, low sugar, low glycemic index. Anyway, part of that is we've switched to the Ezekiel 4:9 bread. I wish I had a better report...we eat it regularly because it's better for us...but I find it's so damned dry I have to look twice to make sure I'm not eating the packaging! But, after a while you get used to it I guess. I don't mind it any more. I try and make it a tad more moist by spreading mustard on sandwiches made with it.We keep it in the freezer then take it out and use it like any other bread. We take the whole loaf out. We don't thaw a slice at a time.

megomendy

My family, except me, eats Ezechial bread and we keep it in the refrigerator. We freeze some extras.

Stupidboob

Hey Gang, 
  I will try to catch up when I can.  There has been a lot going on and I can not even remember if I updated.  My brothers surgery went well with a few things here and there.  He went home and he was hurting (to be expected) but it got worse.  Then today he went into A-fib, is extremely anemic (blood transfusion has been put on hold) but may take place.  He is back in the hospital.   I seen the surgeons assistant and she feels what I am feeling is just radiation changes thank God.  I have been having stomach issues and ended up in the ER Sunday/Monday, they were thinking diverticulitis and/or kidney stone.  I have to go this week for an endoscopy but because of the diverticulitis the gastro has put the colonoscopy off until I do a round of antibiotics.  Asking for prayer and I will try to catch up as soon as I can.  Lori 1020 yes it was me that said I have lifeless eyes.   You all are all in my thoughts and prayers even though I am not here much.   Calling it a night but I will try to catch up soon . 

Cocker_Spaniel

Stupidboob what a terrible time you and your brother are having.  Relieved that it is only radiation changes and hopefully nothing will show up on your colonoscopy and your brother will now start to get better. Sending you and your family big hugs and Lots of prayers to get well.  

InspiredbyDolce

Regardgin Ezekel bread - I've never bought it frozen before.  Some types of the Ezekel bread are more dry than others.  If you try to pull the slice out of the package and it crumbles apart, that means that one loaf is stale.  Ezekel is a bit of a dry bread, however, some of that has to do with the dates on the bread.  It's important you search through the rack and get the date farthest out.  Also, the Ezekel cinnamon raisin bread does not seem as dry as Ezekel's plain bread.

I've never bought it frozen or had to freeze it before.  I buy it from the regular non-freezer bread section and when I get it home it goes into the refrigerator.  The cinnamon raisin bread is really good and you won't need to pamper it as much. The sandwich type you have to watch the dates carefully and don't try to put almond butter on that one.  It would be way too dry!  )

ALHusband brought up a good point, and it's something that I'm doing as well, and that is watching the glycemic index. The glycemic index being low helps control spikes in blood sugar, which is of additional benefit not only in controlling insulin surges, but in keeping energy consistent throughout the day.  There are a few glycemic index apps you can download.  I've got 2 on my phone.  A quick reference sheet and then a more complicated app.  You can search for the app and choose one you like. 

For those of you who are considering juicing vs blending, I've researched this a lot and have also talked to my Onc about this.  Blending might actually be better because of the fiber that you have from making things in a blender, it slows down the rapid absorption of sugar into the bloodstream from pure juicing. So if you are on the fence about buying a juicer or a blender, I think you would have just as much success with a blender, and the added benefit of fiber into your diet.

StuipdBoob - I sure will be thinking of you this week as you go through your procedure.  I hope you are feeling better now.  Many hugs to you!  You've been through so much with you and your brother to worry about as well.  

BanR

stupidboob: sending warm wishes and wish your brother a speedy recovery. Good to hear that it was only due to radiation. I am sure you will go through all the procedures smoothly!! You are a very strong lady, I must say

There is one thing I want to know.. when I began AC, I had so much nausea that I hardly ate anything. My weight kept dropping down by  2 pounds with every cycle. By the time I reached my 4th and last AC my weight was down by 8.8 pounds! But my oncologist never changed my dosage ( except for the last one). Then with taxol, I didnt have any nausea and I started eating and my weight went up by 2 pounds with every cycle and by the time I got to my last taxol, it was up by 8 pounds again. But my oncologist never increased my taxol dosage. 

 With weight our body surface area also changes, so the dosage should also change... I feel a difference of 8 pounds, between the 1st and 4th is quite a bit, wonder why he never changed the dosage....

Anybody having any idea about chemo dosage? Did your dosage remain the same too, irrespective of weight fluctuations?

simplelife4real

AL I feel the same way about the dryness of Ezekiel bread.  I'll use it for a while and then go back to an multigrain orangic bread that Costco sells that I really like.  

Stupidboob, so sorry about both you and your brother's problems.  You have really been dealing with a lot.  I hope you catch a break in the action at some point soon.  Hugs.

I got my last drain out (the ALND drain) yesterday.  What a relief!  I'm two weeks post-op and still have quite a bit of pain.  It's impacting my sleep.  My surgery was different because I had thirty-year-old sub pec implants that had ruptured that had to be explanted and the capsules around them taken out.  The recovery from hat part of the surgery ended up hurting more than I expected.  It's getting better daily and I know this is temporary.  In the grand scheme of things, this post-op surgical pain in "small potatoes" in my book, but it can be hard to remember that in the moment sometimes.

BanR

simplelife: Good to hear that its all finally over and the tumor is all dead and gone!!! Did they say anything about PCR yet? 

FierceBluebird

Simplelife, Hooray for drains being out! I hated my drains and they also hurt a lot! 

simplelife4real

I haven't seen my breast surgeon yet or my MO.....only the plastic surgeon.  I have appointments next Wednesday with the MO, breast surgeon and RO...busy day.  I'll talk to my MO about the path results.  I'm feeling much better about them now.  I think the small amount of cancer remaining puts me in a catagory that is very close to getting a true pCR.   I'll see what the MO says on Wed.

Now with the drains out, and pain levels managable, I'm trying to focus on gradually building up my exercise.  I did 10 minutes today on the elliptical...slowly, but enough to get my heart rate up above 70% of max HR.  It's a start.

InspiredbyDolce

BanR - Your Onc's office probably weighs you at the beginning of each visit.  Some chemotherapy doses are determined based on body surface area (BSA), which doctors calculate using your height and weight.  Some chemotherapy drugs are administered based on a specific amount (dosage milligrams) determined by the type and extent of cancer.  The NCCN guidelines will indicate what the recommended dosages are -- when you get to the Preferred Chemotherapy section, scroll down and it will show you the exact amount of dosing recommended. 

I also went through the same thing as you and asked the same question.  There should be a chart in your file that shows how much they administered and what your bsa was to arrive at that total if they used that in their configuration or an indication of the amount (dosage milligrams) that they used.  I have a complete chart of mine and know exactly what dosage I had of each one each time.  I can tell you that I gained 10 pounds from #1 to #4 and it did not change my dosage, and my doctor is extremely scientific.  You can bet as well that yours has double checked the dosage at every single infusion to make sure you were receiving the appropriate dosing.  This can also get technical as they will usually do a quick blood panel to get some other values to properly assess the dose.

I also noticed on the first one that a little fluid was left in the bag.  I asked my mom about this (who is a retired nurse) and she told me not to worry, that they do overfill the bag to allow for air bubbles, drips, spillage and other unforeseen events - so to be confident that I had a full dose.  There should be a chart in your file that shows how much they administered and what your bsa was to arrive at that total if they used that. I believe the BSA does not change that much when gaining 8 or 10 pounds in the overall change in body surface area.  

adi339

Greetings to all! I'm new to this forum and unfortunately I have to be here to support my mom who has tnbc and just started chemo today.

Got a few questions hope somebody can help.

Her tumor was 2.5cm and grade 3 (poorly differentiated) but luckily no lymph nodes were involved. The oncologist only considered 4AC (adriamycin+cytoxan) and 4TC (taxotere+cytoxan) and the latter was chosen for less side effects. Seems that many of you are doing AC+T or TAC, with some even having a dose-dense regimen. I'm worried that TC may not be strong enough for her.

So it has been hours since her first infusion. She has not experienced much side effects but the skin around her wounds (actually almost the whole breast) has become red. Anyone got similar rash?

tekwriter

I did not.  You should call her Oncologists office and ask. Do some research or get a second opinion if you question the oncologist.  You should have faith in the Dr. and a great relationship, I think is  important on this medical journey. I would be very hesitant to second guess a medical Dr.  Sorry  you have to be here but glad you found us.

Curlyq1974

adi339 - I looked like a tomato after my #1 TAC.  I was told it was a SE of the Adriamycin.  It was not itchy or anything, just bright red.  It went away within 2 days.  #2 TAC it didn't happen, but I drank so much water that it isn't even funny to get all the drugs out of my system.  Hope your mom has minimal SE and wish you both the best!

ALHusband

I know it may vary a little for some of you. But, can anyone tell me in general when the Onc appointments go from every 3 months to every 6 months, etc?

InspiredbyDolce

Adi,

Thanks for joining us!  I just checked the NCCN guidelines and TC is a Preferred Chemo for the details you provided, when I followed the chart.  I'm attaching the manual and instructions so you can view it as well.

Oncologists take many things into consideration when deciding the chemotherapy treatment, including: size of tumor, node status, whether a patient had lymphatic invasion,  benefit to risk ratio, family history, age, overall health, etc.  Some of the survivors you see on here with a different cocktail may have a different diagnosis and pathology result than your mother.  

The doctor's statement about the CT having less side effects may be prompting you to think it is less effective.  Interesting to note: it was AC that was removed from the list of "Preferred Regimens" for the 2013 NCCN guidelines (for this page of the manual: systemic treatment of tumor >1 cm, ductal, pT1, pT2, pT3 and pN0 or pN1mi) , and it was previously in the 2012 guidelines.  TC remains in the the Preferred Chemotherapy list for the criteria mentioned in previous sentence.  Adriamycin has risk to the heart, which could be what the doctor meant when he said side effects. Some heart effects of Adriamycin can be irreversible. 

I'm attaching the NCCN guidelines for you and your mother to review.  You can open it and find her exact situation and then see the cocktails that are listed under the Preferred Chemotherapy for her situation.

I read about another lady on the "Let's post our daily exercise thread" yesterday, who is the same diagnosis as your mom (in respect to the signature line) and she too was treated with CT.  --------------------------------

Link to Download the: NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)® Breast Cancer

http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf 2013 edition - PDF 174 pages

What is the NCCN Guidelines Manual?

"The National Comprehensive Cancer Network® (NCCN®) is an alliance of 23 of the world's leading cancer centers, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. NCCN offers a number of programs to give clinicians access to tools and knowledge that can help guide decision-making in the management of cancer."

----------------------------------

The thing to remember is to have confidence in the Oncologist - they know exactly what they are doing and there are multiple things that go into assessing the chemo regimen. If you are not confident with the Oncologist, you can line up a 2nd opinion.

InspiredbyDolce

ALHusband, we went in January to my Onc, (2 year anniversary) and my husband asked "Does she go to 6-month appointments now?"  My Onc said, "Sure we can do that, she is doing excellent." Well, I picked up on the words "we can do that", LOL and I asked "what is protocol?"  And he said "the first 3 years, quarterly appointments".  Now, I'm not sure if that is his protocol or the facility or national.  But he let me choose (we discussed it together though collectively), and I decided to stay on quarterly appointments.  I like the extra validation that things are going well, and it holds me more accountable to ensuring I am checking in with him to report in on all my accomplishments.  For me, I will be on quarterly appointments for this year.  In addition to that, I have an U/S and MRI each year, with one of those being done every 6 months for some type of surveillance.

He did mention although risk has dropped, he mentioned that risk drops significantly more at 3 years.

ALHusband

Thanks Inspired! I know we discussed this with Kathy's Onc...but quite frankly I forget what he said.

InspiredbyDolce

I've seen someone post that at 1 year their Onc moved them to yearly!  So it will vary amongst the doctors.  I'll have to see what the NCCN Guidelines mention.

.... NCCN guidelines say history and physical exam every 4-6 months for 5 years, but does not reference specific Oncology visits. 

MaryFox

Had my last chemo today! YAY!!!  Second consult with RO yesterday and will meet with him again on March 18 for a planning session.  I can't wait to have functioning taste buds again.  And I'm anxious to get my brain back.  I know it will take time, but the clock has now started.  Life is good!

InspiredbyDolce

Congratulations Mary!  What an excellent accomplishment, make sure you celebrate this weekend!  )

momof2doxies

To the person questioning "red rash" after TC treatment.

I went through 4 rounds of TC, 3 weeks apart. A few days after my first infusion, I noticed a lump/knot at the site of infusion. Within a few hours the lump turned red rash like along the vein. I feared that I had some infection. However, it turned out to be the result of Taxotere that leaked through the vein. That occurred in 10/2013 and I still have a scar over that vein and when I touch it, my thumb and index finger become numb. 

I also questioned whether I was getting the "best" choice of chemo. My MO reassured me that recent studies have shown TC to be as effective as ACT. He also has been around long enough to see the heart problems and bone marrow side effects of Adriamycin. Therefore, with my age being 60, he was more conservative by choosing TC.

Cocker_Spaniel

MaryFox yep it will take a time to get back onto your feet but you have made it yay.  Each day will get better and better and it's a great feeling.  Yep I get the occasional "what if" but I soon banish that away because I refuse to go there.  I want to live and do things that I have never done before while I have the chance.  So congratulations on your last chemo.  If you have to have radiation,  well that was a breeze for me.  No side effects whatsoever and no tiredness.  On your way up now girl, so you get going.

AL Husband I see my doc's every three months for five year's.  I have requested no blood tests because as I said above I just don't want to go there.  If it comes back I'll deal with it then but in the meantime I am well covered with plenty of instant help should I need it.  I don't want scans or MRI's either.  My body will tell me if something is wrong.  I feel great and just want to get on with living now the treatment is behind me and the sun is shining so it's a great day to be alive.    

adi339 trust that your oncologist has decided on the correct treatment with your mum.  They will monitor her closely and be on to it should anything arise. with regards to the redness on her breast keep a watch on her temperature and if it should go up call her  onco or whip to emergency just to be on the safe side. tekwriter is right she should have faith and trust in her onco and if she has doubts a second opinion can always be sought.   Special hugs to her and you.       

Simplelife4 every little bit of exercise will help but take it slowly, there is no rush.  You go girl.

Tital didn't see you amongst the crowds at Ironman today.  I kept looking but couldn't see you. Plus Taupo put on a beautiful day for the Ironmen.  It is just perfect for them.  We also have some American's on the commentators panel. They showed some magnificent photo shots of Taupo it looked gorgeous.  

Have a great day ladies thinking of you all and sending hugs.      

megomendy

Damn, now I'm all confused. I am starting on ACT a week from today. I'd love to avoid the heart issues linked to A but I thought that TC was "not as good" as AC.

artsmart

adi339 - I am also on 4 rounds of TC (just finished the second)- had similar issues with rash developing along the vein where they stuck my iv.  Also had lots of pain around the area they did my lumpectomy after the first infusion.  This is the first time I have heard of anyone else having these symptoms - thanks for sharing ladies.  I was given the option of ACT but was super concerned about all the heart issues related to that therapy and not keen on 32 visits and port.  I was told TC was effective for triple negative (by 2 oncs) - and it seemed like the better alternative for me.  Good luck with your Mom - I found the worst of chemo side effects started 3 days after each infusion.  Make sure she drinks lots of water! 

placid44

Onefineday,

I have the same profile as you - 3.1 cm tumor, one positive node. I had BMX, but was still advised to get rads, which I did. 

InspiredbyDolce

Meg, when does the carboplatin come in?  In my opinion, if your team is recommending ACT plus carboplatin, they must be planning a more aggressive approach. I think Adriamycin is weighed for benefits vs risk, and in you, they obviously do not feel it is a risk to your heart.  I'm not sure I would change the course of things or question it now, because they are adding in another cocktail to your treatment. To me that means that they want to treat you in a very specific fashion and have really tailored this treatment for you.  I would ask them when your chemo starts, what enhanced benefit will you get from carboplatin and what will the ACT accomplish for you.  I think it's great that they are pulling out all the stops on you and tailoring a very specific aggressive plan.  You don't want to leave any stone unturned. I'm sure they have assessed that the benefit of Adriamycin and weighted it against any potential negative effects.

TifJ

ALHusband- I went every 3 months for 2 years, then every 4 months for another year and at 3 years I moved to every 6 months.

adi339- I had a rash on my face and upper chest for 2-3 days after my first TC. I didn't get it again on the other 3 treatments.

megomendy

Inspired, actually I brought up the addition of the carboplatin, because of a study in Dec. 2013. It had good results before surgery so I asked her if she gave it after surgery and she said a few people had asked about it and she had added it. 

Sigh, I'm getting so confused now.