Starting Chemo June 2017

hhuey

Hapb- thanks you for the advice..I appreciate all you give

Kim- I have one that is very prominent when I put my arm straight up..I can get my arm up all the way but the tightness is really something and I just dont want it to get worse..I have tightness all the way to my elbow sometimes and even down to my wrist on occasion..I have been doing one stretch where I almost hang from the doorway reaching all the way to the top..It is helping with the range of motion but the cord is still there visible to the eye..Maybe they come and go because I had trouble at first then it went away and now its back but seems to be in a different spot..I just keep stretching

PeachyJeanne

hhuey I hope your rads went well and the cording wasn't too uncomfortable. Good luck!

Kim good to see you and hear you are busy. FISH is just the type of test. When the original 'stain' test results equivocal, a sample is sent for FISH which looks at the actual cell make up and will give a definitive answer if there is HER2 amplification. If your initial test came back definitively negative, there is no reason to send for FISH. Good luck with your upcoming rads.

Tomorrow I go for an echo cardiogram. Thursday I'll have a port put in followed by my first treatment. I will have a combo of CMF chemo, Herceptin and Perjeta. After the 4th, it'll just be Herceptin and Perjeta every 3 weeks to round out a year. 17 infusions. Anxious to get started so I can be moving closer to the finish.

Hope you all are doing well.

JuliaJazz

Yesterday I went to my first caregivers support meet up.  A friend started it.  I think it is really going to be helpful for me to have somewhere to talk about all these feelings that come up around dealing with my parents and stress relieving.

At my oncologist yesterday they explained my bloodwork to me which included tumor markers for the first time.  They tested for two of these and both were within the normal range.  They said not to look at how close to the top of the range one of my markers was but to find over the next few visits (usually every 3 months) to find what MY range is (it will vary a little bit) and then only to worry if they start spiking up over that range.  Very interesting indeed.  We are lucky.  I bet they didn't have all this knowledge in the 70s when my husband's mother died of breast cancer.  Knowledge is power.

All of you who are still dealing with treatment are inspiring me with the way you are keeping on keeping on.  You go. girls!

JuliaJazz

An interesting post by one of my favorite cancer bloggers about changes to the staging system.  Wanted to share it here for you dear friends.  This is my favorite of the 5 or six forums I am on on this site.  I appreciate how we have kept the support going.

http://nancyspoint.com/confused-ajccs-updates-breast-cancer-staging-system/

Anonymous

Julia, I am glad you are participating in a caregiver's group. I am part of a support group for women with cancer (all kinds), and I do think it is helpful. Thank you, too, for the article. You alleviated some of my concerns about LCIS. I discovered both DCIS, which I remembered, and LCIS were on my pathology report from my lumpectomy. This article makes me feel better about that. I never got any genetic testing, I think mainly because I had no family history and no children. I guess that is a good enough reason, but the Onco score would have been interesting to note for likelihood of recurrence. As I also understand, because I had such extensive lymph node involvement, mine wouldn't have been staged lower, anyway. So, I have what I have. That doesn't mean all I am doing won't knock it out of the park for good. I am praying for that. Looks like I will have 33 rad treatments, and I finished 3 today. I am tired when I get home already. Ha. I think it can't be the treatment so soon, just a culmination of it all.

Take good care of yourself as you continue to care for yourself and your parents.

JuliaJazz

Glad you found the article helpful, Kim.  I love Nancy's blog.  She has some very insightful posts. She has a facebook page as well.  I am thinking of you with those rad treatments.  You are a warrior! I didn't have an Onco score but I had a mammoprint which did give me a percentage for recurrence at 5 years - which is pretty low - but not 0.  So we all have to do the best we can to kick this thing.  Sounds like you are doing just that.

PeachyJeanne

Julia thanks for that link. It's a lot of info. Makes sense to incorporate all the variables when staging and treating. Amazing to me that HER2 readings have only been looked at since 2010.

Kim glad the rads are going well. You'll be at the finish line before you know it.

I had my port put in this morning. The procedure went well. I'm just now starting to feel a little dull ache but not too terrible yet. Unfortunately, I was not able to get my first infusion since my insurance company did not approve yet. Grrr..

Slight chance it may come through today and I can go in tomorrow. I hope so. I don't want to push out a week.

Anonymous

Peachy, I replied on the other link to you. In case you don't see it, as there are a lot of posts (I get lost), they made me wait a week before they would access my port. ?? Mine took a few weeks to settle down. My nurses told me it was because I was thin on top. ?? Who knows, but it did finally. Sleeping was a whole different issue. I was a tummy sleeper. Not anymore. I have now gotten used to my back (best anyway) and sides. Did you not have a port before with the A&C? Honestly, I still think chemo brain lasts beyond the time it is over. Did they take out and put back in? I am confused. Sorry.

PeachyJeanne

Kim I did not have a port for the ACT chemo. They didn't recommend it at the time because I was getting dose dense and would only be getting 8 infusions total. However, by the end of that, finding good veins was getting a little difficult. Now that my left side is not an option, I didn't want to have difficulties on the right side since this is a year of treatment. I was told they could use the port same day and that was the plan. It came as a surprise that I was not getting the infusion. Darn insurance...grrrr. I called my doctor's office and told them to keep calling and if by chance the approval comes through today, I would like them to try and squeeze me in tomorrow. I had already arranged to be home today and tomorrow - not next week. I'm frustrated but I can't do anything about it so I won't let myself get too worked up over it.

Luckily, I can sleep on my back so sleeping should be ok. It does feel like it's time for a Tylenol or something. Whatever they gave me is definitely wearing off.

moodyblues

Peachy, When I got my port, I did ache a little bit but, had no problems in general.  I, like Kim had to change my sleeping position.  I had a tiny pillow that was sent in a care pkg from a BC group that I would lay on top of my port at night in case my husband would accidently roll over and sling his arm.  This tiny pillow really helped me when I would roll to my side, it lessened the feeling of the pulling sensation I would get from the port. ( I had the port on the opposite side of my MX)

Hoping you get your treatment soon!

Anonymous

Peachy. I hope you get good news today that you can proceed with treatment. They never had issues accessing my port for treatment, so that was a very good thing. I hope the aching has calmed down for you. The pillow is a great idea. I still use mine on occasion.

HapB, I am sorry chemo brain has plagued you. How are you doing? I feel a bit tired today. Day 5 of Rads. Ready for the weekend break.

JuliaJazz

Hope everyone has a good weekend.  Following all your posts but too busy to reply individually at this time and don't have anything too important to say except that I am thinking of you gals.

PeachyJeanne

My port is feeling better. It doesn't ache anymore but I know it's there. Hard not to know as it looks like a little marble under the skin. The steri strips are still on and I have a little bruising but not too bad. I'm anxious to get moving again with treatment. I got a call with the insurance approval late Friday afternoon.

I picked up Scar Away silicone strips for the scar under my arm from the lymph node removal. Seems silly to worry about the breast scar since I still have an exchange to go through. Has anyone used these? The box says to wear for 12 weeks. Not too concerned right now about scars but thought I'd try them. It was an impulse buy while I was picking up band-aids.

I am 4 months post chemo and have a very dense crew cut. Nothing long enough to part or style but it is becoming long enough that I wake up with 'bed head.' I'm not complaining. I hope growth will continue while on Herceptin.

LTWJ

Peachy,

I have my 3rd Herceptin on Tuesday, I finished chemo in Sept, had BMX and recon in November. My hair is also a dense crew cut but I have 2 areas that are pretty thin( where my head rests when I sleep my husband says. I also get bed head 😂. I still wear a wig while I work, as a sub teacher in an elementary school but in 2 weeks I have asix week job at a high school. I’m going to drop the wig then. My hair has been great growing fine with herceptin and no side effects

Anonymous

Peachy, So glad the port has settled down. Mine always looked like more than a marble, meaning much bigger...like the size of a quarter. I know there are many different kinds of ports. That may be why this thing has taken a while to heal. I am finally seeing improvement, but it was not the quickest thing.

I haven't used anything on my scars, though I have thought about it often. Because of rads, I wouldn't be able to at this point. Maybe I will after that is done, though at that point will it be effective?

I get bedhead, too. Ha. I don't mind! I also have what I think is a cowlick, where it wants to stick straight up in front in one little section. The part is way to the left (naturally), and there is nothing I can do about that. I tried using mousse before church yesterday and actually used my hairdryer for the first time in many months. I was laughing, but it felt kind of normal.

LTWJ, Sounds like you are doing well!

JuliaJazz

Ladies  I can also relate to the bed head.  I have been googling that hair grows 5 inches a year so it will take me 2 years to get back to my old "do".  Much patience will be required.

Anonymous

Julia, That's an interesting fact to know. Looks like short 'dos for us all for at least the first year. I'm ok with that.

JuliaJazz

Kim and Peach and all, , here is a short article I enjoyed about growing out hair

https://www.bustle.com/articles/118731-7-hair-hacks-for-growing-out-short-hair-when-it-seems-impossible

moodyblues

Julia, thanks for sharing the link.  Cute ideas in video!

Anonymous

Julia, Definitely love the idea of scarves and headbands. Not sure I can justify barrettes at 50 years old, but I might!

PeachyJeanne

Thanks Julia! I guess some folks at work and on the commute didn't know I was 'wiggin it' for months because when they saw me with the new 'do' they said "Hey, you cut your hair!" I just say "Well, wasn't exactly my idea but here we are!" It's filled in enough that I guess I could have done this on purpose. Maybe. Good thing is, I don't really care.

Anyway...I know some are just being nice, but there are definitely some that are really clueless which is a nice surprise.

moodyblues

Peachy.  Recently I had a girl at Walmart say "I love your hair!",  I think she was just being nice because really it is too short to even call it a hairdo!  Hey, I'm just glad to have some hair now.

pink_is_my_colour

You are all so lucky that your hair has grown back. Mine is coming in at the sloth rate. I might have 1/8 of an inch at best after four months. Leg hair is coming in good and strong. Could probably braid that stuff! No armpit hair which I can do without permanently. Went for blood work yesterday and things have improved by a very small bit. Blood sugar has gone up by almost a whole point. Not happy about that part. Been exercising and watching the diet but I guess this cancer really knocked the stuffing out of me.

Peachy: I love your attitude!

Hap: At this point I'd take owl feathers for hair. At least I have enough fuzz that my hats and scarves don't slide off anymore.

Julia: Five inches a year???? Ohhh, I don't have the patience. I really didn't expect it to take this long to grow back. I'd even settle for a short hair doo at this point.

Anonymous

HapB, I think owls are so cute and most definitely wise. Don't worry about it. Mine is definitely softer to the touch thus far.

Peachy, How are you feeling? One day at a time.

Pink, It does seem like all the other hair is coming in way too fast (the kind we would have gladly said good riddance to). You should see my right armpit. I cannot shave because of Rads, and it is like a forest on that side. I had to apologize to the new guy today...haha

Hugs to all!

pink_is_my_colour

Kim: 😂 Thanks, I needed that laugh!

Hap: Eight months!!!😩 Good thing they didn’t tell me about this before chemo. I know it takes time and patience is not one of my virtues. My grandmother always said my impatience would get me introuble.

JuliaJazz

I agree that many of us may take longer than a year to see 5 inches. Five months after my last infusion. mine is about 3/4 of an inch but my receding hairline is showing and I was mistaken for a man when I went out without scarf/turban and earrings.  Some days I do my own hair,but if I want to look really nice, I still do the turban. Patience is called for with my eyebrows as well.  Still drawing those on , although I think they are filling in a little. Hugs to all.

Luwusu

this is how much hair I have now. My last chemo was 10 months ago, my last Herceptin was.........yesterday! All done, except having my port removed next week. My hair has been slow growing, but I can finally style it a bit. I think it's about 4" long. My eyelashes came back first. Then brows, though they're still sparse. I still have to fill them i

moodyblues

Pink and Kim, you guys are too funny!

Luwusu, your hair is lovely!

JuliaJazz

Looking good Luwusu.  I do hear some people on AIs have thinning hair so I am a little worried about that although I had thick hair to start with and so far my hair is growing in thickly (except for my receding hairline.  When my hair is as long as yours, Luwusu, I will be able to cover that up.  Hugs to everyone and good wishes for hair growth and prayers for those of you still on treatment for healing and speedy recovery.

Anonymous

Luwusu, That's a fabulous head of hair! You look wonderful - healthy and happy! Congrats on finishing Herceptin! WOOT WOOT!

Julia, Whoever did not recognize you as the beautiful woman you are clearly needs their eyes checked. (I am hoping it was a complete stranger, since I just put that in writing.)

I am on Letrozole, but I didn't realize it could thin your hair. I guess I could transplant what's under my right armpit if things stop growing on my head.

Day 9/33 rads complete, and I have felt tired this afternoon. It's not chemo tired, but I will be going to bed early.