Starting Chemo March 2015

DavisD

Hi lovely ladies! Just popping in my big bald head to say hello and I'm thinking of my chemo sisters.

shaz101

susan. Anytime you or any other BC sister wants to visit you are very welcome to stay here.

Katy,so nice to hear jack and tutti feel at home already. Just Remmber there is no rush to get unpacked. Take it slow and enjoy it.

Sue. Wow the countdown is on. I will be thinking of you.

shaz101

hi Diane. I'm very pleased you popped in. I've been thinking about you. I hope you're doing well x

shaz101

has anyone got their period. I haven't but I was wondering if I should be expecting it to come back.

SpecialK thankyou so much for all your help with my lymphoedema. I've been doing self massage and exercises as well as getting laser and pt massages and wearing my compression bandage and I've just started dry body brushing a few days ago. This morning I have noticed that my lower arm isnt as swollen. I think the work is defiantly paying off.

avmom

Hello, all.

Whitney, you have sooo much hair! I just started to have a light fuzz late last week. Here's what it looks like today.

I'm not great at taking selfies, but I think you can see that I'm a bit fuzzy on top. It's really just a shadow on my scalp right now, but it was nothing at all ten days ago. I was talking to my DH one day, and told him I was bored with being bald. A couple of days later, I had just the beginnings of hair visible. And I didn't even have to rub frogs on my head (lol)!

It's wonderful to see that everyone is finishing up chemo and radiation, and some are moving forward with surgery. I have an appointment with my reconstructive surgeon on Tuesday,many we will be setting the date for my prophy mx and reconstruction - likely in early September. I am quite impatient to get it done, though I know it won't be an easy surgery.

My port removal site is progressing.

Katy, your new place looks lovely. Hugs to all.

ninjamary

avmom you have kept your eyebrows! Lucky girl.

SpecialK

shaz - so glad you are seeing progress with the lymphedema, and that I could help. It seems to be a condition you can keep fairly well controlled once you figure out the best combination of treatments, which can vary from person to person.

Jackbirdie

I see no difference from last week. I am goingcommando almost all the time now. Don't give a shit.

Meme117

Never made the walk today - argh!

Woke up at 10, yikes. Checked on my little garden, tomato and peppers plants not producing much. Sat outside for a bit then made big breakfast and cleaned up kitchen, seems to take hours. My arm starting aching so figure I did too much and rested the remainder of day. Talked on the phone a lot, totally not like me. Having tons of family drama right now which I was avoiding. I have 3 sisters and now none of them are speaking to each other, so ridiculous. I'm trying to remain calm and neutral like Switzerland.

Sharon what a lovely group to walk with! And great goals for the year. Do you have the color runs there? I've awaited to sign up for one but will need some trainng first.

I'm in for next March or April. And my left eyebrow hairs disappeared last night not all but quite a bit, wtf

SueH58

Shaz - So glad to see you around more. You're getting your life back! Yeah!!!!!!!!!!!!!!!!!!!!!!!!!!!

avmom

hey ninja, my eyebrows have disappeared and are coming back already, though they are very light. I became pretty good at using a pencil while they were gone, and I darken them up every day. They started to grow back along with the "fur face" others have mentioned. While I didn't welcome the chin hairs back, the eyebrows really help my face look more like my normal self. My skin feels much better now that it has a bit of hair - when it was really hairless, it felt almost like plastic.

Jackbirdie

Diane- nice you popped in! Hope all is well.

Avmom/ good to see you back too. I also have some peripheral N in feet. Im close to 6 week mark so found your MOs comment interesting. I am not supplementing. I was waiting t see which SEs go away and which hang around in order to minimize how much STUFF I still have to take! And now, having adddd Tamoxifen into the mix, even harder to keep them separated. I wonder if the Tamox could be the source of muscle pain. I'm getting head sweats and hot flashes, mostly at night. Otherwise I can't point to anything specific.

avmom

Katy, my neuropathy is better than it was when I was on paclitaxel. At one point, I could barely hold a pen, and my handwriting was completely unrecognizable. My hands are much better -only my thumbs and first two fingers are numb on each hand. I was taking some morphine on an as needed basis, but that just made it easier to fall asleep, rather than providing much relief for my poor, aching feet. I hardly take anything now, because my MO doesn't hold out much optimism that anything will help much. I'm still napping a lot, some days more than others. I'm planning to spend a couple of hours at work tomorrow, then on to my sister's overnight to see my reconstruction surgeon Tuesday. It's a two hour drive to the city where my sister lives, so I'll travel the day before rather than stress about getting there on the day.
My feet feel like they are frost bitten all of the time. Walking on them just makes them worse. One of my neighbours went through treatment about 4 years ago, and her feet are still not back to normal. That said, I did paclitaxel, dose dense, and that seems to be highly associated with chronic neuropathy. You did a different regimen, so your mileage may vary.
Hugs to you.

so-she-did

I had my last wbr on Friday! 5 boosts to go and I am done with rads! Super itchy nipple. I want to find a good tree and rub against it like a bear.

I would love to meet all of you in person so continue to count me in on the get-together. School break for me this year is the last 2 weeks of March. March 19 - April 3. We are talking March 2016, right? I won't have any days off otherwise but a weekend could work since I'm just over the hill.

My girls are HOME! I enjoyed the time alone to get myself back to more of a normal, but am so glad to have them back in my arms. They didn't exactly come back in one piece but close enough!

wpmoon

Amy - can I use that tree when you're done? My underboob is SO itchy! 5 more WBR, then 5 boosts for me. Ughhhh. Does this ever end?!

AV - I used cold caps, so I kept most of my hair. Just ended up with a bald spot that was reminiscent of male pattern baldness. SO HOT!

I noticed A TON of chin hairs earlier today. Made me want to cry (even more than I was already crying).

Trvler

Oh, right, Whitney. I forgot you were cold capping.

Question about rads: Can you tell me why each of you had it? I know if you had an lx why, but if you had an mx, can you tell me why you ended up having it? + nodes? I am still hoping I don't have to. I had 1 + node and one iffy one that wasn't biopsied.

ksusan

I had a positive node.

Think of me when you rub against our trees--I itch but have no breasts associated with where it seems to itch, so there's nothing to scratch directly!

Trvler

So Ksusan, you had a mx and one node and they gave you rads? I am hoping SpecialK will weigh in here. Isn't the standard 3-4 nodes?

ninjamary

I have 0 node involvement and am having 33 rads.

SpecialK

There are a lot of variables with a recommendation for rads with a mastectomy. Original tumor size compared to original breast size, proximity of the mass to either the chest wall or the skin, and margins after mastectomy. Number of nodes, size of involved node(s), and extracapsular extension might all determine whether rads is recommended. NCCN guidelines for stages I & II breast cancer indicate that after mastectomy (radiation after lumpectomy is always recommended, regardless of nodal involvement) if you are node negative, with good margins, and a mass smaller than 5cm that no radiation is recommended. For patients with the same stats as previously mentioned, but a dirty margin - consider radiation. For those with dirty margins or a mass larger than 5cm consider chest wall and inframammary and supraclav. For those with 1-3 nodes strongly consider the aforementioned. For those with more than 3 nodes rads is recommended. Remember that other factors such as age, hormonal receptors (since TN have no other adjuvant therapy alternatives currently), and/or other co-morbidities all play into a rads recommendation. Also good to note that if you seek a consult with an RO, they may say you need rads since that is what they do. I think the tumor board recommendations, and opinions from BS and MO are important in determining whether rads is necessary, not just what the RO says. Both my BS and MO said I did not need rads - the multiple times I asked - I had a BMX for a 2cm mass with excellent margins, ALND for 2 positive nodes and intense chemo and targeted therapy. A casual mention of my stats in conversation during a consult for my friend with her RO and he said he def would have recommended rads for me, so....

SueH58

AHHHHHHHHH!!!!! So I was having a good day--then my mother called. I told her I was reminiscing with my sister-in-law about the day back in April when I decided to do chemo. I cried--she held my hand. And now Wednesday I will finish my last treatment. My mom (as is typical) brushed it off and said "it's that darn message board that gave you all kinds of unnecessary fears." I said "don't you think people soon to undergo chemo have fears? Don't you think many have worse SEs than I had?" Well she basically said we will have to disagree. I said "Well I have to go" and basically hung up. I think what bothers me the most is that chemo is probably the most significant emotional event in my life, and she brushes it off like it's nothing. She will never understand. To her, it was just a medical procedure. All those worries for naught. I'm mad as a hornet (as if you couldn't tell.) Had it not been for this board, I still would have investigated possible side effects. And if it weren't for this board, I would have never gotten the pleasure of all of you there to support me, share SE treatments, etc. I'm just about in tears. Arggghhhhh....

SueH58

Amy, other than the itchy nipple, how are you doing with rads? Much fatigue?

Jackbirdie

Avmom, thanks for your input. I hope you don't need to buy a cane but if you do you should get s beautiful one. I have seen gorgeous wood ones, still very feme.

Amy, so glad your spirits are up, your girls are back and you are taking a little more time off. I definitely notice my brain isn't quite right yet either. I think since yes we were talking about March 2016!!!! Yay!!!!

Let's run with your two week window.

Eileen can you confirm any 3 day weekend or just 3 consecutive days at your Arrowhead house during March 19th-April 3rd window?

Can others weigh in on whether this works?

Sue- so sorry. You don't need this this week.

Sorry about the itchiness to all experiencing. You must feel like angry mama bears.

Trvler

I am sorry, Sue. It's hard when your own mom gives you more grief than support. Hugs. I can't imagine having gone through chemo WITHOUT you wonderful ladies. If there IS a silver lining, you all are it.

Special: Thanks for weighing in. I am also linking your post to a FB private group from NOLA about it. Someone on there was asking too. I prefer to use research and stats when making my decisions but I notice many doctors don't even mention numbers. But your post goes to show that even doctors vary in their recommendations. You said what I was trying to say…sometimes that if you are a hammer, well….everything is a nail.

Amy: I am happy your girls are back. I know how much I miss my girls when they are gone.

Just as an FYI, I have been reading about eyebrows and lashes a lot lately and it seems like people often lose them AGAIN every three months sometimes for a year. Don't hate me for saying it.

ThePrincess

I don't think family members understand the value of this board - and it is a REAL value - not only for emotional support but for information. But being able to talk to other women who know and understand what is going on in our heads and bodies, that is INVALUABLE and has made such a huge difference to me. My family doesn't get that part either, fully, but they totally support my looking for support here.

ninjamary

if you are node negative, with good margins, and a mass smaller than 5cm that no radiation is recommended

Of course I am node negative, clean margins less than 5 cm and I'm still getting radiation. I'm not going to complain on this one I'll take it, Though I wonder if they are doing it to line their pockets with cash or it's just the cancer center's protocol. Then again, I'm triple negative so that's probably why I get radiation.

KBeee

ninja, some very recent studies have come out showing benefits for women with smaller tumors, etc, but they have not yet been adopted as guidelines.

Sue, sorry about your mom. That sucks. My mom went through this in 1992 and cannot understand that things have changed. She questions everything and tells me to just "treat it like the flu". Um... No

ninjamary

Sue - I feel your pain. When I talk to my father about BC he ignores me and then discuss' his medicare, billing, health appointments. I find it very frustrating. Though he hasn't told me I'm over reacting. I had him drive me to chemo once and he discussed the above during infusion. He wasn't invited back. Not that I want this all about me, but hell if I want to discuss how much medicare paid on your last eye exam or that you have to pay $20 for something and that's unfair.

wpmoon

Ninja - I think it's because you had a lumpectomy that rads was recommended. I'm triple positive, node negative, with a mass smaller than 5cm, clean margins.. but had a lumpectomy. When I asked my RO to remind me of what rads drops my recurrence rate to, he said without it, I'd likely have 35% chance of recurrence. With it, only 5% chance. I don't know how they calculate those numbers, or if they pull it outta their asses, but my RO has also been through cancer, so I trust him more because of that.

I agree, all of you ladies have been a saving grace. No one understands the way you do.

ksusan

BS and 2 ROs recommended radiation, and I trust BS's judgement. He was less happy about chemo. I did both, though each only gets me a few % decrease in recurrence and longevity, because I want to do everything I can to be sure the cancer is gone, and while both have potentially serious side effects, they're less serious than metastatic cancer.