Asked why I am stage IV again - clearing up??
 

I had my every 3 week herceptin/projeta treatment today, but I always see the doctor first before treatment.

I asked these questions :

Why am I stage IV and not stage 111C:

1. Tumor size on Supraclavical node was over 2 CM - biopsy was her+++. ER 55% and on tamoxifen for around 2 years - so it was working.

2. Found reoccurance after all my treatment after 1 year without any treatment. Tch, radiation , And herceptin for a year.

3. 3 spots in my axillary nodes which were deep. Which I thought they took those out....I don't know if all those are called that under your arm or not. They took out 8 and 6 add cancer.

I asked other questions about vitamins I take and have for 8 months now. She said Omega 3 with fish oil, calcium with vitamin D, and multi vitamin she said would recommend to always take. The others only if it helps like glucosamine and pro biotics.

They can't do a cancer marker on me now because I never had one done in the beginning for a baseline so it would now be a random number.

They haven't done any bloodwork on me since August...I don't know if that's normal or not.

My Side effects are; bloody noses and occasional sores in my nose, sometimes runny eyes and nose, diarrhea or now constipation if I have a BM which before I went everyday but now I can go 3 days.....and a constant my feet and hands hurt quite a bit and it seems both are always cold and that's the worst side effect.

And I asked if I could do infusions 6 times in 12 months and she said only if I can go several years with stable or Ned which mean the same she said.

Just wondering anyone else's thoughts on all of this. ;).

Re: Asked why I am stage IV again - clearing up??
 

I still don't understand why you are stage 4. The tumor on my supraclavical was 2.3 cm and I had tumors in my auxilla nodes and in both breasts. I was staged 3c. Not sure that it really matters though.

I did have baseline tumor marker blood tests at the time of my diagnosis. However, my onc has not repeated these blood tests since my original diagnosis.

I had my last herceptin infusion in August and I haven't had any blood test since then. However, I will be having blood tests in Feb before my onc visit. This seems consistent with what your onc is doing.

With the exception of the cold hands and feet, I had the same side effects that you mentioned. I found the runny eyes to be very annoying because I couldn't really manage it well. I'd constantly look like I was crying complete with the tears and puffy red eyes.

All of the side effects resolved themselves shortly after I completed treatment.

My onc suggested only vit D and 150 minutes of exercise per week. However, I do take all of the supplements that you mentioned excluding glucosamine and pro biotics

Re: Asked why I am stage IV again - clearing up??
 

Good to hear from you, Linn. I am also still confused because it appears that the cancer is still within the overall breast area and not in other distant areas.

Anyway, my gastroenterologist recommended Align, which is a probiotic sold in drugstores (Walgreens, CVS, etc) and also online. It's not cheap but it has definitely helped regulate me since chemo screwed up my GI tract. Worth a try for a month, in my opinion

Take care

Janis

Re: Asked why I am stage IV again - clearing up??
 

Hi Linn, I don't understand your classification. If your BC is localized to the breast and lymph nodes you are not Stage IV.

I can say this with certainty as upon my diagnosis there was tumor board discussions on my case since I had so much tumor in my breast and nodes and no clear surgical margins after my mastectomy.
The definition of Stage IV is distant mets. I was relegated to Stage IIIC and that was 10 years ago! No recurrence.

Re: Asked why I am stage IV again - clearing up??
 

Linn,

The only possible reason I could think of is that your cancerous Supraclavical node was located in the opposite side of your cancerous breast. That would put you at stage IV as it's considered a 'distant' node. Also the size (over 2 cm) of the cancerous node could make a difference as well.

We have many long-time stage IV survivors on the board. Please read their stories by doing a 'Stage 4' or 'stage IV' search. There's a thread called 'calling all stage IV sisters' full of inspiring stories.

Sending you good vibes.

Correction: I guess regardless which side the nodes are located, supraclavical nodes are considered distant nodes.

Re: Asked why I am stage IV again - clearing up??
 

Do stage 3C have to get treatment every 3.weeka?? I have asked the the last two visits why I am stage IV it's not like I want to be.....

I am going to print this page out and take it too my doctor on January 7th. I want answers too, but I ask and get the same response.

Re: Asked why I am stage IV again - clearing up??
 

It doesn't appear any of the people that responded need an infusion every 3 weeks. This is making me so confused about treatment. My doctor is supposed to be one of the best in Indiana. She is at IU simon cancer center Dr. Kathy Miller which I saw for the first time in February 2014 for a second opinion about simply taking tamoxifen vs. armidex.

I liked her, and I switched to her. Exam in August found a lump and it was a complete and the most depressing thing that has happened in my life. I had hope despite the continued side effects which were getting better from acupuncture. I thought I beat it and to be told it had reoccurred, put my port back in again and no end game anymore....it felt like I was handed a death sentence.

Now, I do get afraid of bumps or different little things going on in my body. Thinking what if it went somewhere else, and I down play things I suppose to her because I am not ready mentally to hear a bad report even if it was good report because what if it's bad.

It seems I am hearing you say you think I am stage 3C and my doctor is wrong. If she was then I wouldn't need all this treatment? Or is she not telling me something.....it all is unknown and that sometimes is harder then the known.

Re: Asked why I am stage IV again - clearing up??
 

There is no absolute benefit of Herceptin weekly compared to every 3 weeks. I started out weekly and then switched to Q 3 weeks due to this. There isn't any difference in the regimen according to the stage.
As far as questions regarding your staging status. You can pull up the info. on what classifies Stage IV on any reputable on line website. American Cancer Society, etc.

Re: Asked why I am stage IV again - clearing up??
 

I'm not so sure the staging matters, Linn. Technically speaking, only those who were first diagnosed at Stage 4 are Stage 4. Those who metastasize remain at the stage of their original diagnosis, with the addition of "with metastatic disease."

You had a recurrence, so you need additional treatment to make it go away, as well as to prevent further spread. I think that for someone with HER2 positive cancer, that would certainly be Herceptin/Perjeta infusions every 3 weeks, even if it were a purely local recurrence. Having a Stage 4 diagnosis from your doctor--for whatever reason, even if it's not technically correct and it creates puzzlement for everyone--means that you may be entitled to certain governmental benefits (you should look into that), but it's certainly not a death sentence, and as a practical matter, it doesn't change your treatment or what you need to do to get beyond it.

For what it's worth--without regard for the technical constraints of staging--my vote is with the 3C crowd. But as I said, you may find Stage 4 useful, and it certainly doesn't not mean you are doomed.

Re: Asked why I am stage IV again - clearing up??
 

Linn,

It is my understanding that Herceptin is administered on a three week cycle with active disease regardless of your stage. A different administration time frame would be as she said, after your disease is stable, or you reach NED (no evidence of disease). Perhaps the other folks that you have talked with that do not have 3 week dosing have already reached stable or NED status?

I understand your confusion over being classified as a stage IV and psychologically staging has meaning to each of us. However, I don't think your stage classification in and of itself will have any effect on your course of treatment. That would be determined by the evidence of disease and pathology. So even if your staging was changed to 3C, it would most likely have no effect on your course of treatment.

I am sorry that you are having to deal with recurrence and confusion, but hang in there--you are getting great treatment.

Best Wishes,

Re: Asked why I am stage IV again - clearing up??
 

Gumby I had the year of herceptin alone for a year every 3 weeks and have had no treatment for a year until August 28, 2014 and now herceptin 415 mg and projecta 425 MG every 3 weeks. Are you Still getting treatment of herceptin being Ned and stage 3C?

I actually voice recorded my ONC and listed to it 3 times today. My sister asked her what stage she immediately said 4. And then repeated stage 4 two more times in the 36 minute conversation. Also, on my application for social security she wrote it down, and I was approved for it in 5 weeks of filling it out. Now, that being said I will not receive it until March for February because of a 5 month period social security makes you wait. And I received accelerated benefits for my life insurance.

The only thing after listening to her talk is she said we did not find more extensive Desease or whole lots of stuff.....I don't know what I am missing. But to me I guess stage 3C vs Stage 4 if the same treatment path why stage it at all??

Oh And I was never really staged In July of 2012 because of preadjunctive therapy, and I was told it couldn't be staged because of receiving that.

I always seem to have more questions then answers. I suppose if it's regional reoccurance and stage 3C then why would I have to be having treatment with no end game. It was on this board I saw someone wrote they changed there treatment after 6 years of I think herceptin they got to change it to only 6 times a year. I of course asked the doctor when can I maybe do that and not every 3 weeks.

I still have the same question 3C or 4 do you still have a terminal disease or incurable the exact words my doctor used hoping to become NED or stable without IV infusion treatment??
Maybe there isn't a concrete answer and 3C you still have the same treatment IV infusion for life until maybe just maybe they can have a complete cure for the crappy cancer which I hate!!!

Re: Asked why I am stage IV again - clearing up??
 

One possible reason of the change of Herceptin schedule (from every 3 weeks to weekly) could be to protect your heart.

My Herceptin-only infusion was done weekly because my heart function (measured by MUGA) had dropped more than 10 % at the end of six rounds (18 weeks) of TCH. Even then, I could only do 4 weeks because the MUGA continued to drop ...

Re: Asked why I am stage IV again - clearing up??
 

Greetings Linn,

I thought I would try to aid in your quest for answers. Granted I am no medical doctor but I work with doctors all day long. And I am a Stage IV breast cancer patient. I live in the world of medicine in my professional and personal life. My understanding that when cancer is Stage IV that means it has metastazied outside of the breast area into areas such as: liver, lung, brain, spine, and bone. Dr. Miller is known as one of the best in Indiana for sure. I am interpreting your information as the cancer was now found on the supraclavicle area. That confuses me a bit, too. If your cancer has not spread to tissue or bone then indeed you might be stage IIIC. It might help to get a second opinion in the Indpls area.

What I hear you asking is the treatment question. If you are truly Stage IV then you remain in treatment indefinitely even if you hit NED, The reasoning behind indefinitely is that women who have reached NED, and get off treatment end up having the cancer return. Steph and AndiBB have been fortunate to remain NED without current treatment. If you are Stage IIIC then there is an end in sight. Indeed, this question must be clarified for you.

Whereas we do not know what tomorrow brings I can tell you that the past three years as a Stage IV patient I have continued to live my life: married to a great man, working fulltime, family, friends, travel, etc... I have been NED since August 2012 but get my Herceptin and Perjeta every three weeks. It is not fun being tethered to the infusion pole but I will take it over the alternative. Hope this helps.

Take care,

Jackie

Re: Asked why I am stage IV again - clearing up??
 

Linn,

While I was trying to find a definitive answer about the treatment of a recurrence of HER2 positive breast cancer, I happened upon this page:

http://secondopinion-tv.org/episode/...cer-recurrence

I think the answer to at least one of your questions may be here.

Also see Key Point 2 which is a little later in the page.

Re: Asked why I am stage IV again - clearing up??
 

I guess the supraclavicular node has to be considered a distant node?

http://www.cancer.org/cancer/breastc...cancer-staging

Re: Asked why I am stage IV again - clearing up??
 

However, according to this link, the staging does not change even when cancer spreads...

https://cancerstaging.org/references...r-Staging.aspx

Here's an illustration of the lymphnode locations:

http://www.cancer.org/cancer/breastc...-breast-cancer

Re: Asked why I am stage IV again - clearing up??
 

There's also this:

http://www.cancer.gov/cancertopics/p...essional/page3

If that node is on the same side as the original cancer, it's not defined as metastatic disease.

Re: Asked why I am stage IV again - clearing up??
 

No clinical or radiographic evidence of distant metastases, but deposits of molecularly or microscopically detected tumor cells in circulating blood, bone marrow, or other nonregional nodal tissue that are ≤0.2 mm in a patient without symptoms or signs of metastases.

That is why stage V. Tumor cells circulating in blood. Thank you Rhonda for last link. Now, I understand why.

Re: Asked why I am stage IV again - clearing up??
 

Well, if you are on disability I would not be in a hurry to get a second opinion and get reclassified as 3 c.
There are stage 4 women who are doing well who have had to fight with disability to keep it because SS has said that they are well enough to work. If you are reclassified as 3c, you could definitely be at risk of this happening if you don't have other major health issues.

I think if I was you, I would focus on getting to Ned. The concern is that your cancer came back relatively quickly. Hopefully, this combination works for you and can get you and keep you Ned.

Once you are for awhile , then you could tell your dr that the side effects are becoming too much and could you go to once a month.
After doing that for awhile, then ask if you can spread them out even more.
I do 5 doses a year now,but for at least the first 2 years of being Ned, I did 12 doses a year.

Re: Asked why I am stage IV again - clearing up??
 

I was originally diagnosed in 2006 and then had a recurrence in 2010. I have been on Herceptin every 3 week for almost 5 years now and am still NED. If they can get you into remission, which seems quite likely, you might want or need to continue on the Herceptin indefinitely. It's not too bad as far as side effects and seems to be less of an issue the longer I am on it. I was originally stage IIB. Stage makes us feel better but the main thing is what type of response your body has to the treatment.