Starting Chemo March 2015

Jackbirdie

Neverthought- I am one of those people who has pain ongoing. Sx 12/18. Over 8 months now. Though there's been noticeable improvement since I was dxd with truncal lymphedema and the MLD and constant, committed compression has helped. Since the swelling has decreased, a lot of the zinging, zapping pain has too. It has not been what I call discomfort. To been in the 5-7 category 24/7 all that time. But I know I am in the minority. Tough tough decision.

It wasn't the recurrence itself that bothered me but with my dense breast tissue, with my now dxd history would no doubt have caused ultrasounds, biopsies, and worry every 6 months. And a history of back problems led me to suppose the lack of weight balance would exacerbate neck and back issues. Oh well. What's done is done. I don't regret it but I know so much more now. It is very hard to make a seasoned decision when you've just heard the words that will change your life forever. And you know nothing to start.

I am having a PS consult next week to see if a scar revision might help with the large areas of tissue that are the location of a lot of the pain. And if insurance will cover. I know it will cover reconstruction. But if I want to take a chance onjust looking tidy, rather than disfigured and in pain, will they pay for that?

And even if they will, how would I gather the strength and resolve to willingly go under the knife again after what has happened already?

eheinrich

Sharon I'm so sorry to hear about your RA. You have certainly been served a footlong shit sandwich with many toppings.

Carrie - I was really afraid of Tamoxifen because of my history of depression. I know everyone is different but I was able to stay on 2 of my 3 drug cocktail and Tamox hasn't really caused me any side effects. Maybe worth a try.

I had a mammo on my right side prior to getting it lifted. I got the form letter the other day telling me that I have dense breast tissue which puts me at risk for cancer. STFU stupid paper...

pboi

Surgery is 70-75 percent effective, is that in general for all types? Thanks Theresa for posting that today. I'm still having a hard time with the fears and it helps to see that.

Going to a survivorship appointment now, not really sure what that will be about, but hope it will be helpful.

PB

Italychick

Pboi I'm not sure but that is what my surgeon told me and I have also seen that number online in discussions where doctors debate how to identify women they believe are over treated. Which of course they can't do so they treat everybody. I do think you need to have obtained clean margins, etc. for the number to apply. But it is the number I always hold in my head, and I figure if we have added all the other treatment, that just ups the odds. I for one know that my chemo infusions causes tingling in my surgical area, so I can only hope it did its job

molly1976

Ha, Eileen, I got that letter about dense breast tissue after my initial diagnostic mammogram, too. Would be nice if somebody had mentioned it maybe a bit beforehand....

molly1976

And yes, pb, my MO said the same thing about 75% of women being cured after surgery even with no further treatment (and even with my her2+ status). It's just too bad we can't know for sure that we're in the 75%

SueH58

Sharon, you look absolutely gorgeous. I was taken aback when I saw your pic. SOOOOO glad life's taking a turn for the best for you!!!

Jackbirdie

At my first MO appointment I was shown a computer printout which had my stats on it and coughed this out:

30% chance of recurrence with no further tx (this was before the Oncotype)

It assumed I would take the Tamoxifen and showed a reduction in that risk to 20%

Then we did the Oncotype I think, to determine the risk reduction if I did chemo. Chemo statistically didn't offer me much benefit. Less than 5%. But there was the chance I wouldn't be able to tolerate HT, or that it wouldn't be effective for me individually (not everyone metabolizes the drugs as efficiently) and then I would have been left with nothing. That, plus the Oncotype being fairly high, I didn't see a way around it.

KBeee

Sharon, So sorry to hear about the RA diagnosis. Enough is enough. I hope they have a good plan for you.

Jackie, I sure thinnk the scar revision should be covered!!!!!

Italychick

I just lit up everybody at my MOs office. They forgot about me sitting in the lobby! No call to remind me of appointment, they did some blood work three weeks ago and never called me with results, and I had to call to remind them to get my echo submitted and approved. I told nurse practitioner I realized very early on I had to monitor everything here and be my own advocate on all scans, tests, infusions. They made three infusion mistakes I caught. She asked if I wanted to talk to office manager and I said no, I already tried that with no success. I just want to get through Herceptin and move on with my life, meaning be done with you incompetent idiots. after reading that DCIS is almost always her2 positive and I had DCIS and idc mixed together, I am wondering going if I should even be doing Herceptin anyways. I'm probably really triple negative since my her level was borderline.

I hate fucking cancer. I would never see a doctor if it wasn't for this shit. I swear right now if anybody confronted me aggressively, I would totally punch them out.

pboi

What has happened to my brain...somehow I managed to skip a whole page, and wondering why I was confused?

Lee...after finishing rads I've found the side effects seem to come differently for everyone. I had 25 tx too. I did have some mild itching around week 3 which was helped with hydrocortisone. The fatigue started building from the beginning, getting bad about weeks 4-5, and really hit me 1-2 weeks post rads. 2 wks post rads the fatigue started to let up. My skin was intact the whole 25 tx, and started to peel 5 days post rads, but by 2 weeks post rads my skin and fatigue were much better.

Carrie...I can identify so much with your post. I too wish I could just go back to normal, but now am having to figure how to live my life with a new normal...and I don't want to or like it!!!!!!

Theresa...Grrrr!!! Sorry you're having such troubles, I too realized early on that I have to advocate for myself....to try to protect myself from people's mistakes or from falling into the cracks. You ladies are awesome and such a wealth of info, and I think it helps me be a better advocate for myself!

PB

wpmoon

Molly, my period hasn't returned yet, either, and I'm about 12 1/2 weeks PFC. Prepared for when it strikes, though. Then getting an AMH blood test done to see if chemo affected my fertility at all.

Italychick

ok home and mostly calmed down. Good thing I have this forum to rant to!

Now to just wait and see if I have any Herceptin side effects. So far I haven't, but I always worry.

ksusan

That's terrible, Theresa!

KBeee

Teresa, Can you switch practices? If there are others around, I would not hesitate to do so.

Italychick

the problem is they are ten minutes from my house and everything else is farther away. And since I only have Herceptin left, I will gut it out. I like the MO, it's just the staff are not so great. Maybe I should try talking to her again

KBeee

I would definitely talk to her. I would tell her point blank how much you like her, but that you'd have trouble recommending the practice because of the other issues. You will likely need to see the MO for 5+ years, so it's a relationship that you want to be a good one.

ksusan

Theresa, I like my RO and techs, but the agency infrastructure and human barriers are too much. Most recently, a nurse argued with me about my being given a product I'm allergic to, saying my allergies were not in my chart after 3 attempts (and I have a witness!). Her entire focus is on my being wrong with no MEDICAL response, like "do you need a different product?" or "do you need something for the rash caused by the first product?" I have to get through or around her to get to the RO, and it's not worth my investment.

Should I ever need to see an RO again after my December follow-up, I'm driving up to my MO's shop (2 hours). If I need radiation again, I'll get a sublet in another city rather than dealing with this place.

eheinrich

Did anyone use anything on their scars to help them not be ugly down the road? My PS gave me fancy scar cream that I appear to be allergic to. I asked the NP what I should use instead & she said nothing. It seems like there should be something. (I know someone is going to say coconut oil - but aside from that).

shaz101

my period hasn't returned either.

Lee, I got progressively more tired, especially from week 5 until 2 weeks after. Then the fatigue truck reversed off of me. My energy has increased each day this week.

Katy how much lemon do you have? I might try it. I guess like pineapples it has citric acid. I'll put pineapple on my shopping list. I just want to be normal again. I'm sick of being in pain.

eheinrich

With Tamox we shouldn't get periods, should we?

Italychick

Eileen lol. Have you tried Mederma? I think that's what it is called. Either that or Silvadene, but I think Silvadene is for burns. Rubbing fresh cut pineapple on scars helps reduce them. I would also go to a dermatologist, they have so many tricks to minimize scars. And emu oil can help too. Vitamin E topically, and take bromelain, which is the extract from pineapple

Has anybody had their MO do blood work for alpha-1, alpha-2, beta, gamma (globulins) and albumin? Mine did. They were normal, and I don't know why she did them. So I looked them up and if the levels are increased, they can be related to cancer, rheumatoid arthritis, kidney issues and digestive issues.

ksusan

Miaderm. Available from Amazon.

Italychick

www.mederma.com. I guess they are both for scars.

KBeee

Eileen, I do not know the brand name, but there are some silicone type scar sheets that have been given good ratings online. Any pharmacy should have them

Jackbirdie

Sharon- I squeeze one small organic lemon in hot water before coffee, food or any meds first thing every morning. I wait 15-30 minutes after that before I have my beloved first coffee.

It's weird as you would thing an acidic lemon would be hard on an empty stomach. But counter-intuitively, lemon aids in digestion and gut issues as well as breaks down the crystals between the joints that cause arthritis pain. And of course, cleanses the liner.

BBwithBC45

Eileen, my PS told me to use Scar Away, silicone sheets that Karen mentioned. In hisopinion Mederma doesn't work.

shaz101

Thanks katy for both information and the chat that brought me back into a normal head space. Now onto my visitor...

She had breast cancer 2 years ago. When I made mention of the RA diagnosis,

she said "oh, I had that"

i said "you were diagnosed with RA? What treatment did you have?"

She "oh, I was offered treatment but I didn't want to take anything, and it went away, its good now"

Me "are you sure it was RA? We're you tested?

She "oh no I wasn't tested or anything, my Dr just said he thought it was."

WELL IT FUCKEN WASN'T ... OK!!!

SERIOUSLY! you would think that a BS survivor would have some sort of empathy. She just said "oh, you'll be ok, it just takes time!"

FUCK OFF LADY

rant over, deep breathe, don't let it ruin you day...

My day looks like this so I can't complain (for too long)

Jackbirdie

Sharon- that is so beautiful

jumbledbamboo

Sharon, thats beautiful! And I enjoyed your rant. I relate. I don't have RA but I swear people just pull things out of their butts that make no sense. Good grief.