WHY would I put myself through this?

Hi fluffqueen01,

In another thread I posted links for as many of the current studies that are FINALLY beginning to acquire information about the possibility of trastuzumab without chemotherapy -- about 7 or 8 studies currently.

As an early stage T1c, I remember questioning whether it would be wiser to begin chemotherapy early on, or to save it for "later", since most early stage bc patients never recur even if all they have is surgery -- which means they can still do radiation and antihormonals and ovarian ablation as protective alternatives that then boost their likelihood of never recurring even higher than the estimated 40% for those who needed surgery only.

The reality is that this may in fact be a rational time for those diagnosed with stage 0 to 1 breast cancer to do any or all of those other things to prevent recurrence while they wait to see what the results of the current studies on trastuzumab alone turn out to be.  The good thing about that is that one CAN always do chemotherapy "later". Once it has been done one can't go back.

In terms of metformin, the question I have is, does it do any good (or harm) for people who are not overweight?  (I don't have that problem myself!)

A.A.

LadyGrey - how are you feeling?? Did you get to see the onc and read her the riot act??

 (((((((((HUGS))))))))

Sue

I just logged on while watching the poor Indianapolis Colts. That nurse is a nut if she tells you she never heard of a runny nose with Herceptin. And it doesn't start during infusion...at least mine didn't. Mine comes and goes. I will be walking around perfectly fine, and suddenly, runny nose. And I mean grab the tissue. I always carry those little packages. It is generally just one little blow and all is good. I am so sory you ended up with a cold after everything else.

I agree you should do online Christmas shopping! For the 3 months I was on chemo, I was really careful about where I went, etc. and I still ended up with a pseudomona infection that my body couldn't fight off and lost the first set of tissue expanders. (That infection probably came from the hospital).  My daughter hauled me to the midnight opening of Macy's saying it would be fun, so along I went. Fun to spend time with her.....NOT fun to shop. Store was hot, the entire mall was like the middle of the day at 2:00 a.m.. We got home at 3:45 and said never again. LOL. The shoe department looked like a bomb exploded. I pointed out a great deal on Rampage boots, and  said "I'll wait here." She just looked at me and said there was nothing that could convince her to go in there. LOL

Regarding the doctor, I see mine everytime I have a treatment, so I saw him weekly for that taxol/chemo and now every three weeks at Herceptin. That is when he checks all side effects and prescribes appropriately unless I have called. I think there is a big mix in how often docs see you. If I had decided on the Med Center onc, it would have been Nurse Practitioner one time and doc the other. That was a question I asked as I wanted to establish a relationship and keep them on my side.

I'm glad your brother is calling. Use every person you can to help you get what you need. My best friend, is a nurse practitioner, married to a doctor, and they have moved heaven and earth more than once to make sure I have had everything tested and been seen by a really good doc,quickly, including the cardiologist when I did the initial stress test. She was the one that forced me to see a breast specialist after the first diagnosis of LCIS tissue. Thank heavens.

Can't answer the blood clot question other than to say I tried to donate blood a few years ago. The tech nicked a vein which bled into my elbow area for 15 minutes while he was trying to figure out why he couldn't get blood. Then I let him try the other arm and he did the same thing. By the time I was ready to leave, they had me packed in big bags of ice, and it was swollen, hard and hurt for over a month. I think maybe I got him fired, when they called to check on me. Haven't donated since.

Aside from initial diagnosis and follow up after treatment was completed, I did my chemo treatment in Alaska 1 1/2 hours by air from any oncologist or cancer center. I saw my PCP only -- who is not run-of-the-mill but exceptionally highly trained in emergency care and is an internist. IMHO, I got better care because he saw me and had lab tests run for me in person much more often than you are being seen in person. That was almost 10 years ago.

The runny nose incident is great documentation of the failure of medical providers to provide accurate information to patients because the medical profession provides doctors and nurses who have never done treatment themselves.

Given that 1 in 7 women are diagnosed with breast cancer in our lifetimes, why are almost all chemo nurses premenopausal and never have had breast cancer?

A.A.

A.A., you did chemo 10 years ago?  It seems to have worked for you.  Considering your comments against it, I'm kind of confused.

bluedahlia,

Almost 10 years ago -- started in March, 2002, and ended in a heap in July, 2002.

It is impossible to know one way or the other whether chemotherapy worked for me, but I would gladly go back in time if I could and turn it down. That is just a personal, in hindsight, decision.

It may help to realize that at the time I was looking for answers, my onc failed to mention to me that any trials for trastuzumab were even being offered, despite my specific request to participate in any trial for HER2 positive breast cancer. And this guy was and is considered to be at the top of the onc-heap in NW America. (So, based on that, should I have trusted him to be any more knowledgeable about chemotherapy????) Also, at that time, testing for HER2 positivity was not yet even standard practice for breast cancer patients -- even though I had personally been tested. In addition, at that time the only standard adjuvant medication given to breast cancer patients other than toxic chemotherapy was tamoxifen.  The aromatase inhibitors were still only being used for metastatic breast cancer at that time. So... not a lot of room to maneuver.....  At the time I suggested to my onc that I have ovarian ablation and then tamoxifen, instead of chemotherapy. He was not supportive, but had no definite analysis to offer to refute it, either.

It may help also to have the background information that my Alaskan female surgeon (who boasted as part of her credentials that she was a "breast cancer specialist"), waited until she had 3 successive mammo-ultrasounds each 3 months apart that were all BI-RADS 4, before she finally found her "round tuit" and did a biopsy on me. (She did, however, find time to go to Europe during part of that time.) I learned not to believe in everything medical providers believe in. So.... by the time I got to the onc, instead of being T1a I was T1c, and in a bit more of a hurry.

I think it is quite possible that my tumor could have been encapsulated since I had no LVI, and when I finally did have the "privilege" of being biopsied (could I have done the biopsy myself???), it was quite obvious to me that ultrasonographically the core needle was unable to penetrate the target tissue and bounced off of it repeatedly.

In order to get through the chemotherapy, I also ended up having to have my steroid dose doubled each time at infusion. It is possible that the doubled steroid dose may have resulted in a better outcome for me, given that it decreases inflammation. If so, was the chemotherapy helpful or was the steroid the key ingredient? There is no way to know, and scientific endeavor hasn't tried to figure it out. I did chose not to have ANY blood boosters, so I dodged THAT bullet, even though it resulted in miserably prolonging the total time required for chemotherapy, with 4 weeks between every blasted dose instead of 3 weeks.

Perhaps it was my intense focus during and following treatment to get as much supplemental natural sunshine as possible, despite living in Alaska. This was before anyone was making any fuss about the advantage of vitamin D. I read at one time about an Australian female scientist who was investigating whether the blue color of the actual suns rays has an added effect to the vitamin D in that it affects the pineal gland, which affects melatonin levels, and melatonin is thought to be protective for some breast cancers. A HER2 positive online friend of mine (who later died of bc) liked my idea so much that she painted a lovely cartoon picture for me of me standing out in the snow jumping rope in my swimsuit -- which actually was quite accurate, BTW. I treasure that picture from her. I even wrote to the organization of laboratory technicians at the time, pleading with them to have the minimum standard for vitamin D increased from 400 IU q.d. for adults, but.... received no response. Do they ever listen?

I remain unsatisfied that chemotherapy is most "effective" for bc. I think some of its effects may be helpful as well as harmful, but I still believe that scientific investigation is failing to recognize and acknowledge that the net effect of chemotherapy is more harmful than helpful for early stage bc, or that the mechanisms that are at play can be achieved by other means than chemotherapy.

A.A.

TheLadyGrey, it's good to see your post and I'm glad that you are feeling better. 

I started to see red when you mentioned the nurse's response suggesting that you had the stomach flu.  But then I laughed when I read on and saw your comment that maybe it really was the flu.  Talk about crappy luck and bad timing.  

The way I see it, you are due for some good luck soon. Something has to go your way. So let's hope that it starts this week, with Herceptin #3 and then TCH #2.  I will keep thinking about you and hoping that your luck finally turns!  

The Lady Grey,

I had a very similar diagnosis to you.  IDC 8mm ER/PR neg, HER2 +++,

Had TCH chemo,, 6 rounds with herceptin, then herceptin..for 1 year.

After round 1, I had similar symtoms. Severe abdominal pain, intractable vomiting  (PM me if you would like).

I would not allow what happened to go unnoticed by this Oncologist.  If she is as well respected as said, she would want to know what has happened. 

I had a way to contact my Oncologists directly....always!!  He would always return my calls when I asked to speak to him.  I could always get to him. "I am here for you day or night" those were his words. It sounds like you want that.  It sounds like you need that.  And you deserve that.  Discuss this with her, and if you feel like you are not getting the support you need from this office, then find a new Oncologist.

I had a runny nose for one year.  It absolutely is a known side effect.  

You should always be able to use your Oncologists office for I.V. fluids if you need them, and for treating nausea and vomiting that you cant control at home.  Thats why they are there, and thats what the infusion room is for. They want to keep you out of the hospital.

Ask for alternative oral antiemetics, they should have samples, including emmend as someone mentioned.  I found compazine worked for me, not phenergan, not oral zofran.  So this is sometimes trial and error.

I dont think you were sold a bill of goods, but I think she candy coated the whole experience.  She obviously wanted you to do the chemo, and it is true that some patients dont have severe symptoms.  

I love my oncologist, But I think there is always some candy coating.  I'm a physician myself.  Its sometimes a curse to know details...the spin it positive attitude worked for many others... It didnt work for me.  But, what I discovered is that much of this journey is about perspective, and you cant be expected to have any right now.  Know that this does get better and you will endure.  It absolutely sucks, but you will find joy maybe not till this is over and maybe not for a year or two after you finish treatment...on your own timeline.

You are not alone.  

My onc has to be one of the busiest in this city, yet he always sees every patient at every treatment - he works incredibly long hours. If your onc doesn't see you at the treatment (even the weekly H ones), I think there's something very wrong!!

I didn't get to see him at my last Zometa infusion as I gave up at 6pm and went home. BUT, I called and made a review appt for a couple of weeks later and they squeezed me in and he ended up seeing me second!! I just had questions to ask him and wasn't ill or anything, but he gave me as much time as I wanted. He is very special.

Susie-your onc sounds like mine. He is a wonderful man. No sense of time, but a wonderful guy. Lol. He drives the scheduling people crazy.



Scrabble-i don't think there are rules about numbers of people in my place, but I have never seen more than two people there. I never wanted to sit in the common area, so whenever possible, I got a room. There are about 8 chairs in the common area and 6 small rooms. First timers always get a room, and the really sick folks. Somehow, my 8:30 appt always worked out so that I had a room. After the first time, when my husband came, and I realized that, I was fine, i liked being by myself. I think if I had company, I would have felt the need to entertain them. This way, I could nap, watch tv, chat with the nurses, etc.

Mine always had me check in with him on chemo days. Although I thought I got a lot more information from the nurses; and had a nurse who was assigmed to me each time and whose direct line I was supposed to call if I had any problems (and who called me the day after chemo to make sure I was doing O.K.).

A good quote:

"Courage is being scared to death but saddling up anyway". John Wayne

Good Luck tomorrow!!!!

Hi Ladygrey.  Almost 10 years after, I still think that if the treatment "ain't so bad", at a minimum every potential oncologist and every oncology staff member should have to do at least two treatments personally..... Here is to getting past it and to better times, ASAP.

A.A.