January 2016 Chemo!

Frill

I can't believe we're all starting to reach the end - at least - of chemo. Or at least we're getting close. I might be able to get my second to last chemo tomorrow if I pass the bloodwork test.

Three of my fingernails fell off while I was in Paris, or if you were a non-cancer person that's what you'd think I imagine. I'm completely sexy. But my lashes and eyebrows are fighting back. They are growing back - I hope they don't fall back out tomorrow on chemo day.

I'm fighting a lot of depression, which is nuts being this close to the finish line. (I guess) I have no one to talk to about it in real life except my cancer therapist - lol a year ago I would have said - wth.

I don't want to do rads. I definitely don't want tamoxifen. I pretty much won't do that one. When can I be me again?

My bonus is FAC has made me so nauseous that I'm just about back to pre cancer weight. By the time I'm done, I'll hopefully be almost back down to my normal weight. And that's a week on vacay.

Cathy: Cabbage? What's the secret?

zinny

Frill - sorry you are feeling badly. Why are you wanting to avoid Rads and the hormone treatments? You have done the hardest part already! Rads are not so bad, at least for me it was pretty easy. I just did the order ass-backwards.

As for the hormones, they are what is meant to be the most effective for ILC, which I have also, so I feel pretty strongly positive about taking them myself - though I am not taking Tamoxifen, but they put me into menopause with Zolidex ( monthly shot) and I will be taking Letrozole. I took them in the fall during rads and before chemo ( yup, ass backwards) and really the only significant side effect was the hot flashes, which continued right on through chemo until now.

We all have to do what is right for us, I get that, but I hear you saying you are tired of not being your normal self more than anything else, which to me is not a good reason to forgo treatment. My 2 cents.

Lolliipop

Frill, I am with you, I think I choose not to do RADS. Chemo worked better than expected and then had my BMX 3 weeks ago. Reconstruction won't start until late fall. The percentage rate of cancer coming back with or without RADS is small in my case. BS and MO both thought it wouldn't be needed. The RO recommended I have it but was somewhat on the fence. I was not able to have my TE placed at time of sugery, if I have RADS the odds of having a successful reconstruction surgery are slim, the skin will likely become toodamaged to place the expanders without having to take skin from somewhere. I start tamoxifen next week, for 10 years

LovesToFly

I'm sorry frill. I finished rads last week and I won't lie, it sucked. My skin is a mess and I'm in a lot of pain.

But...I've been on tamoxifen since May 10. I am tolerating tamoxifen very well, the first week I had some incidence of brain fog and gained 5 pounds, but both went away and I have had no issues since except hot flashes which aren't too awful for me (they were worse during chemo)!

Now I'm freaking about ovarian suppression...monthly shots, weight gain, hair loss, sexual dysfunction. All awful, but like tamoxifen not everybody gets all or most of the side effects, so I will try a month or two and see. There is only so much impact on quality of life I'm willing to accept for what I believe is a small increase in effectiveness (tamoxifen + supression vs just tamoxifen)

Maya15

I also opted out of rads after an in-depth 2-hour RO consult where they concluded it was safe to go either way. Because of Herceptin and Perjeta, they put my risk of recurrence in the single digits, and I also had a PCR to chemo, so despite being stage 3 the RO said rads would lower the risk by only 1-2% more at best. BS and MO both advised me against doing rads because it would do more harm than good.

Very jealous of those of you getting your ports out! I have 9 more months of Herceptin/Perjeta infusions so my port isn't going anywhere for the time being.

Is anyone's hair growing back "multicolored"? Mine seems to be a mixture of black, grey and blonde. With some nice bald patches too. I'm hoping those will fill in soon.

kellychameleon

I'm jealous of port removal too! I will be done with infusions (hopefully!!!) at the end of September. I don't know how long after that I'll have to wait to get the port out.

And yes, my hair is coming back in several different shades. Way too much grey for my liking, but there are several shades of brown mixed in. I texted a picture to my hairdresser to see if it was long enough to color, and she said most definitely. My oncologist said that was fine. So, now I'm trying to decide what to color it. I may go out of my normal comfort zone and go with a bright red or something. I don't want to go too crazy since I work in a fairly conservative industry (insurance) and don't want to freak my clients out! My husband and 6 year old think red's a great idea. My 3 year old is pushing for green.

Regarding rads, that was originally the plan, but now that I'm doing extra chemo, they may be off the table. My nodes all came back clear after the SNB that I had in May. My MO is ordering additional tests with dye to see if there is any scar tissue which would indicate if there was cancer in them before chemo or if they were clear all along. The MRI and Pet/CT back in December showed a questionable node but it was not clear if it was just enlarged or if there were actually cancer cells in them. We're going to discuss at my next appointment, but there's a good chance I'll skip rads now.

My doctor is now recommending that I have my ovaries out. That had been taken off the table when my genetic testing came back negative, but my great grandmother died of ovarian cancer, and my grandmother and mother both have gone through breast cancer. There's just such a strong family history there, that she makes sense to treat me as if there is a genetic component.

Cathytoo

Frill...CABBAGE...hasanti-inflammatory properties. According to Google and my RO is does work on inflamed skin due to radiation. I agree with the women who advised that you NOT decide against recommended treatment. I also agree that this cancer sucks big time. But, we have no other choices. I'm TN and I can only depend on chemo and rads. Chemo was a piece of cake, even though I have no hair or eyebrows (growing in now). No nail issues though. Actually, my nails are stronger than ever. We all just have to hope that all this will give us many years of a healthy long life.

Deidre18

I will be starting my four rounds of Cytoxan + Taxotere next Friday. Will follow with 4 weeks of radiation.Ordinarily, such a small tumor would not require chemo, but since it is triple negative, here I am. I'm scheduled Tuesday for a port, but my onc doesn't think I need one and my husband agrees with him. Any thoughts?

DX 5/18/16 TNBC 0.8 mm right breast Lumpectomy with 5/0 positive nodes

LoveMyVizsla

Deidre, I would say no too, for just four rounds. Why add two more scars to yourself? I'm almost done with my 16 rounds and can't wait to get rid of my port.

Smurfette26

Deidre18 I had the same chemo regime as you. I didn't have a port and initially I was glad but it depends on your veins.

Mine were fine and deep and every infusion the chemo nurses had trouble getting veins. Twice the infusion went into the back of my hand. I was told it wasn't ideal but the only vein they could get. Chemo number 3 took an hour to get a vein and number 2 I had an extravasation; IE a leakage of chemo fluids into the tissue. Will post a pic of the bruising from treatment 4. I still have a faint, bruise like mark on my arm, six months later. My breast nurse said, "If you ever need chemo again you WILL need a port".

If you have good veins 4 treatments are doable without a port. Chemo does ruin those veins but some people have problems with ports. Hope treatment is kind to you. Remember to be very well hydrated and ice your fingers and toes during the Taxotere infusion to help prevent neuropathy. Painting your nails a dark colour can help prevent damage to the nail bed. Hugs Donna.

Maya15

I agree. The port surgery is not fun, port is uncomfortable and very visible, especially in the summer. Then there is the scar. I wish I could get rid of mine but I have 8 more months of infusions to go. I would definitely avoid it if you can.

Cathytoo

Deidre18...I am also TN. i also did Cytoxin and Taxotere - 6 infusions. My veins are thin and roll but I did not get a port. I never had a problem. Here's a tip from my chemo nurse - Drink, drink, drink lots of water 24 hours before each infusion. And, tell them you want the BEST technician. For only four infusions you should do fine. Good luck

LoveMyVizsla

Yikes, Smurfette! Can you put warm compresses on those areas to help the blood reabsorb

Smurfette26

They are old photos LoveMyVizsla. Taken after my last chemo in January.

Frill

Hi, all. In bed after second to last chemo. My hair is coming back better this time - I had it shaved when I started FAC. It's got way less gray, seems more like my regular hair. My eyebrows are back enough to not feel like I look like an alien and my lashes might even be long enough to get extensions again, but I think I want to wait for that last chemo to do anything to try to be remotely attractive any more.

The funny thing about this post - rant below - the only thing I don't mind about all this is my port. Like Donna, I have teeney veins. It even makes the port a problem a lot of the time. But with tiny veins and only one good are (LE arm), the port is my BFF. I don't like the scar, but it's better than the boob one. I can't even imagine trying to do chemo without it. But what scares me is having it out. I had mine put in under general anesthesia. I can't imagine being awake for getting it out. Yikes!!!!

Zinny: I don't want to do rads because I don't want it to screw up reconstruction, tbh. I also just don't want to go through anything else. It also just seems like a ...... cookie cutter treatment, do xyz, boom, you're done. As for the hormone stuff, my sister keeps saying how my mom went through menopause so early, what's wrong with me. I just have a problem turning off the estrogen switch with medication. They've taken my breasts, want to take my ovaries. I know it's not necessarily reasonable. Believe me, I got thrown into cancer therapy because of this obstinance 6-7 months ago. That being said, I'm more on board with rads if someone will say it will improve my chances this crap won't reoccur by a real percentage. Also, I already am dealing with lymphedema. I don't even want to think about what rads will do to that. Insurance is fighting with me on PT and PT went into the year saying I would need way more PT with rads. I'm very tired of fighting about PT.

Jill: I haven't even thought as far as shots or anything like that. I know the next time I meet with the doctor is probably when I'll get the hormone talk, because it's the last chemo visit. No one has discussed it with me since my initial consult because I think the first words out of my mouth were - btw I won't take that crap. But hearing you're doing well with it makes me feel better. I just - anything that screws with my weight or sex - my shrink already knows, is a no go. I still remember the DX doctor telling me it would age me 20 years. That and the whole disfigured speech.

Cathytoo: I think I just want - especially with rads, to hear exactly how much benefit I'm supposed to receive. If it was some automatic decision, I don't want to do it. If there's a real reason, that's a different story. My DX changed sooooo many times over the few months before chemo, there may be increased need. Maybe there's decreased need. To be honest, I'd rather do more chemo if I had the option. I did an initial consult with RO months and months ago - a "meet and greet." It was just too early for me to have questions. Also, I tested positive for some genetic mutation no one even knows about, so they want me to have my ovaries out. I just feel sometimes like this is, and maybe it's lawyer thinking, just a lot additional billables for the insurance company. I'd rather they just pay for some cheap PT. But about cabbage......eat it? Apply it?

Sorry for sounding crabby - again. I used to be happy and funny.

LovesToFly

I did six cycles without a port, it was no problem.

Cathytoo

Frill..,I can relate to everything you're thinking. Down deep I truly believe it's all a crap shoot anyway. I made the mistake last night of going on to the recurrence posts. VERY SORRY I DID THIS! Now I'm convinced I'm going to be dead in a few years from this disgusting disease. But, back to treatment and decisions... We are NEVER going to be given absolutes. My MO won't ever discuss statistics. You have to take all the information and just play the odds. Personally, I went the most aggressive route...even adding two more infusions. And, I always said I would never do chemo, no matter what. Back to cabbage...you put the leaves in the fridge and put them under your bra to calm the irritation. After you feel better you can certainly eat the cabbage or bend down and nibble while it's in your bra‼️ LOL I am using Miaderm while doing rads. Read about it. Formulated by a radiation oncologist and they offer a money back guarantee if it doesn't give good results. My RO raves about it. I'm applying it about four or more times a day. I have two weeks to go and so far so good. Hope you finally make a decision that gives you comfort. I know it's hard

Valstim52

Cathytoo, I made a similiar mistake going on the reurrences and the stage IV boards early on, and again just before surgery. It did a number on my mental state. Same with Dr. Google.

Treatment decisions are hard, but as with many other illnesses there is never an exact percentage or statistic, because we are so individual it's all a big guess in my opinion. because if it does not recur and you had all the treatment then your personal statistic is 100% not 1-2 or 10 to 10.

Cathytoo

Valstim52...I know what you mean about your mental state. I have myself in the coffin already

LifeAloft

Hi all! Doing well almost 5 weeks post chemo, may be losing a couple nails, other than that, feeling really good.

My lumpectomy is tomorrow, any last minute tips/tricks/hints? Not sure if I'll be having a SNB or ANLD since I'm part of a trial. Happy to be getting it over with but getting a little nervous.

~Kelly

Sheri64

Frill I just had my port out and it was so easy. Easier then it was going in.

DFWFLYGIRL

LifeAloft-I had my lumpectomy prior to chemo/radiation and did fine. I did have lymph nodes removed and actually the scars around the lymph area and drain area more painful 6 months later than breast. Everyone is nervous as was I, right before surgery but the medical staff help make it less scary. Hope all goes well for you!!!

DFWFLYGIRL

Ladies,

Finished chemo first of June and now doing radiation. Ironically, getting mouth sores and very chapped/cracked lips now.....didn't get them when I had chemo but getting them now. MO said that can happen....going to back to Baking Soda rinse and Biotin regimen. Anyone else have that appear weeks after chemo done?

LifeAloft

Thank you DFWFLYGIRL!!

Sorry about your mouth sores, I luckily never had to deal with them. Just nail issues for me, 5 weeks out. The fun never ends 😝

Valstim52

DFWFLYGIRL,, I too have very dry mouth and cracked lips during rads. Just finished #12/33. Back to Biotin and super hydration. Thought I was past the mouth thing.

LoveMyVizsla

LifeAloft, your underarm will hurt worse than your breast. Be careful of stretching your arm out reaching for I things. I asked for a scopolamine patch behind my ear before surgery because anesthesia makes me nauseous. Worked like a champ, but also worsened the constipation. Be prepared for constipation, don't let it get out of hand. You might want to start with stool softeners now. Good luck

LovesToFly

good luck lifealoft. I recovered very well from my lx SNB. Wear stretchy neck talk tops to avoid lifting the arm for a few days.

2.5 months poet chemo. I have brows and (short) lashes now. Yeah!

LifeAloft

Thank you ladies for the advice and encouragement!!

Jill, you look great!!! I swear I'll be happier when my brows and lashes come in then when I get my hair!! No brows yet, but I do have a few short little lashes.

buttaflydiva

jill you look amazing. ill be so happy when I get some brows and lashes back. I got some really bad inflammation in my eyes a couple weeks ago, and some infection along my lashline and was told to use baby shampoo to wash the last area with. it helped a lot

Cathytoo

LovesToFly