Starting Chemo March 2015

Jackbirdie

thanks guys. Especially you, Lee. Here I am complaining and you're still in the hospital! Are you still? Thinking of you and hoping you're staying ahead of the pain.

Swimming......

slothabouttown

Katy, dang girl, that sucks! It took 4 weeks PFC for me to start to notice that I was feeling better. I would just be going about my day and then realize suddenly that I hadn't had a bloody nose blow in a couple of days, or my eyes weren't crusted shut when I woke up. The little SEs disappeared before the big ones. I think Lee's suggestion of writing it all down is a good one, then when SEs start to drop away you can appreciate that. I felt pretty okay for about 5 days before starting rads which brought another load of fatigue and irritating SEs. I've read that it can take up to a year to feel normal after chemo. I'm guessing that means things like sleep issues, fatigue, etc. might linger for months? I haven't started to test my energy or endurance yet except for upping the pace of my daily walks. I have a camping trip planned in a couple of weeks and I'm a little nervous that I won't be able to hoist up my tent like I used to. I think it was ninja who said she's working on becoming obsessed with getting fit now instead of focusing on the BC. I'm going to try that plan too. We're supposed to get a break from this Portland heatwave today. The high temps add an extra level of craptaculousness to the radiation burns (I guess technically they're not called burns but try telling that to my left armpit.) Really sorry that this is so rough for you, and sending along some of your own medicine, a pic of fluffy Helen after a long day of gardening! How would you like a nuzzle from that muddy muzzle? She has a grooming appointment today so ill send you an "after"pic later on.

Jackbirdie

Sloth- "craptaculousness" omg. Roflmao.

Helen is fab- will take a nuzzle with or without the mud. Adorbs. Make sure to post the after pics, tho.

ksusan

Katy, I hear you! I'm so sorry you're still having gastro problems from top to bottom--that's rotten.

One of my strategies is that when people said, "You're done!" I'm replying, "Almost--but remember that the chemo side effects are the hard part. I'm still 'in chemo,' but I've had my last infusion." This seems to help. My mother and her husband gave us a little money to celebrate being done with chemo, and after I explained where I was physically, agreed that we should celebrate when I felt a little better (port out, more weeks PFC) and could actually, you know, celebrate.

I'm 5 weeks PFC and still have all manner of significant SEs. I'm intermittently losing body hair, my incisions are zapping and pinging, I'm tired, weird bones (like my cheekbones) hurt, my eyes ache, and I feel stiff. What's been good is that my nail pain has generally improved (though I still think I'm going to lose both big toe nails, which are still developing new areas of lifting). And I do have head hair growing, especially in the back where I can't see it.

I hope you get a cooler day. I'm hoping for a little rain to wash the pollen out of the Willamette Valley. And it looks like we might get a little on Saturday, too, which will make my students come to class rather than sunbathing!

Trvler

Katy: I am so sorry you have to deal with all of that. Yet you continue to be here and inspire and support all of us. The ONLY thing I might suggest is trying a nightly dose of magnesium for the hot flashes. It can cause diarrhea too so watch that. I know for the constipation (which I have struggled with my entire life except now) if I go a day without going, I am going to pay for it. I was going to say something like what K said…can you hold off a little for the Tamoxifen?

slothabouttown

Susan, are you almost done with rads? how are you holding up?

ksusan

Alas, just about to start what will probably be 33 treatments.

pboi

Katy - I'm so sorry to hear you're feeling so awful. My side effects got worse PFC, for about two weeks, then slowly they started to get better. I'm 4 weeks PFC now, and still with lingering side effects. Just try to take it one day at a time, I know it's so hard to be patient, you just want to feel better right now! I agree with keeping a journal of your side effects. It helps me keep track and see things are improving.

Feel free to vent...we're all here for you.

PB

KBeee

Katy, Last time I had my worst vomiting after last infusion and everyone just kept up the "but you're done" cheerfullness. Finally I said that when you get out of the OR having a major surgery, you are "done" too, but your body is not done healing yet. My body has been through a worse onslaught that that and I am "done" when it's finished healing...which is not yet...but I am getting there. That was my canned response for a few weeks because I remember how absolutely craptastic I felt. I do hope that you start to feel better and better each day. My butt cracked when on TC too and my horrid former MO did not address it. My OB/GYN gave me a script for a creme which is a steroid/anti-fungal. It worked like a miracle and literally I felt better within a day or 2. I had my routine year this time a few days before chemo (had been scheduled for months...just happened to fall then). She wrote a script for it this time so I'd have it, and I have used it at the first sign of a rash or cracking down there with the same good results. Maybe your MO can call in something similar for you. ((((HUGS))))

IndyGal35

Thanks for the furbaby pics. Those sweet little faces make my day!

I'm still hurting today, but that's normal. Pain is very manageable as long as I keep up on the meds. I'm hoping to be able to wean off of them soon. I'm home now. They released me yesterday morning less than 24 hours after surgery. I can't say enough great things about my care there. It's was a hospital wide team effort from labs, radiology, and OT to the nurses and docs. I'm overwhelmed and very grateful for their kindness. I think it has already impacted my recovery. :

Jackbirdie

Karen- A great response. Canned or not, I like it and I'm gonna use it. It's nice because it's "educational", but not as hostile as say, a junk punch. Which is what I'm tempted to do sometimes when people say this particularly stupid thing.

Craptastic. Another great word today!

I happen to have my MO's head nurse for a follow up today. I'll ask about the cream. Thanks.

Thanks to everyone again for your support today. I was close to the end of my already frayed rope this morning. I "accidentally" took a second oxy after an additional hour of burning butt pain and feel a bit better now. I just can't put up with any more pain.

Jackbirdie

Lee-So glad you are home safe in your own bed. I am happy to hear that your hospital experience was so positive and your attitude is so good about your recovery.

Please remember that all the stuff they give you with anasthesia will be in your system for a bit. As it leaves your system you may be taken off guard by an increase in discomfort. Totally normal. Just stay with the pain meds, don't try to get off of them too fast, and please don't try to do too much toofast. Listen carefully to your body and don't judge yourself if any of the above happens. This is hopefully sounding pretty familiar since you gave me some pretty similar advice only hours ago.

I'm still with you. Still holding your hand, friend. And Jack and Tutti sending their bestest softest fur your way too.

Lovemylab

Katy ...so sorry to hear you feel so bad. Just wanted to say that when I couldn't walk across the room and breath at the same time my lungs were full of clots. You may want to get that checked if that is not your normal. I'm still on the lovenox shots to keep them from coming back.

Also that tent went back to the store today. My daughters can be adventurists, I need a bed right now. No camping for me! My puppy Oliver was so happy when I gave it up to come inside after a few hours ( a few hours too long).

Hope everyone has a good day. 6 more weekly Taxols for me.

Maureen

Beachbum1023

Jackbirdie, I hope the second dose will help get you through the day. Sending hugs!!!

Lovemylab, save the camping for another time. Creature comforts are needed and helpful now. Good choice!

Meme117

Katy sorry to hear your feeling so awful, I hope you get some relief today. My MO said I'd start feeling normal maybe in 6 months, argh!!

Tired today and now food has started to taste like crap, boo-hoo. I'm making myself rest but I really want to get up and do stuff... Forcing a nap.

Beachbum1023

Meme, I finished DD AC/T on 11/25, did your MO define "normal"? But I also had surgery and rads so maybe I'll be a little slower to normal.

Jackbirdie

Lee- your furry afternoon update. In color and black and white.

Carrie37

Katy, I'm sorry you feel so awful. We are all surrounding you with positive thoughts and virtual warm hugs. I know you can feel it!

Finished 11 of 12 Taxol today. Since I skipped the dose last week my legs and fingers feel better so my MO and I decided to go for it today and next week...I am DONE! The other news?? My scans were all perfectly clear!! Yahoo! I know this can't rule out microscopic cancer cells but it helps to know that no other tumor is anywhere in my body.

My DH went with me today for the first time. He kind of made it fun. He makes me laugh which I love about him. Then we went to lunch. As we were finishing up a woman came up to me and said "You don't know me but I wanted to ask if you are in chemo right now." When I told her yes she told me she is a BC survivor and wanted to give me a hug. She gave me a real tight hug and then told me "I have to tell you that there is life after chemo. Your hair will come back, you will feel better and you are so strong." I got all misty eyed and so did DH. We chatted a bit more and then she was gone. Like an angel. There to tell me it will get better and that rads is not so bad. I needed that. And as soon as she walked away I just thought about how I couldn't wait to tell you all!

This group is awesome and has been helpful beyond words. I know you all get it. Even today as I read your suggestions to Katy about how to handle the people saying "you're all done." Because I am already getting that and I still have surgery and rads! And the lovely Tamoxifen.

Thanks for being awesome! xoxoxox

Carrie37

Also, the furry baby pictures are so fun to see! Love them! Helen is adorable!

rleepac

Carrie37 - Our stats are very similar but they are telling me that rads is probably not in my future. Did you do lumpectomy or MX? I'm doing a BMX so that's why they tell me I shouldn't need rads. If I had opted for lumpectomy, I know I would have had rads for sure.

Bekah

Jackbirdie

Carrie- so happy to hear about the clear scans, and that next week is the last one,

Your story about your angel literally filled my eyes with tears. It was as if she was telling us all through you. I really appreciated hearing her message. Thank you for the honor you bestowed on us all by wanting to tell us right away. So many things make this group so very, very special. You are part of what makes it special.I am filled with gratitude to be a part of it too

Carrie37

Thanks Katy!

Bekah, I had lymph node involvement so my rads will actually be on the lymph nodes and not the breast. I am having a BMX on August 20. 😬😬

Did you have lymph node involvement?

Carrie37

Bekah, now I see that you had 1/1 nodes? I should say that I have yet to meet with the RO and for all I know he may think I don't need the rads.Hopeful!?!

Meme117

thanks for sharing your angel story Carrie, so nice to hear good things. And I'm sooo happy about your scans, sounds like a really good day - 😄

Italychick

Carrie, awesome on the scans! So happy for you! From what I have seen, a mastectomy with 1 node usually doesn't warrant radiation. It used to be they only radiated at 4 positive nodes, but now 1-3 falls into a gray area. I am sure SpecialK will pipe in here and let us know the current standard of care.

Katy, sorry you are having a hard time. Sounds like you need to watch that meditation video about 50 times. Why is there something cathartic about saying the "F" word?

Lee, hoping you are doing okay today.

I had a lady at work come up and ask me if I was through with treatment, she is about 62 I think. I said I am done with chemo, but have Herceptin until March, and I was impatiently waiting to have enough hair to ditch my do rag. She said she grew her hair out and was donating it soon to make a wig for some lady who wants natural gray and white hair. She said take that damn do rag off, come to work without it, we will all support you. I told her she was sweet, but I wanted to wait until I had enough hair to cover up the few scabs I still have. But I really did think it was very sweet of her, and for some reason I didn't mind her comments.

And in the meantime, still on the bike! Feeling my leg strength come back, so that is a positive sign! I rode 130 miles last week and climbed about 4900 feet. So feeling hopeful, just hope Herceptin tomorrow doesn't get me. Last infusion I felt flu like for a few hours, and the nose is still a little drippy, but that has been about it.

SueH58

Katy, healing thoughts coming your way. I think it's so cute that your kids stick side by side. So cool. You mentioned you will get tamoxifin. I am 57 and was thinking I'd go on an AI. How did your MO determine Tamox--did they do a hormone test?

Hope you feel better day by day.

Hugs,

Sue

eheinrich

I'm jealous of Jack & Tutti. My 3 cats hate my dog. She only wants to eat the cats. When I moved out I took the cat that hated the dog the most. She's such a happy kitty now. I would love to get a buddy for my kitty but I'm not sure she'd be open to the idea.

Jackbirdie

E- go for it! All those poor kitties with no homes....my vet actually said this only worked because she was a kitten. But I am so pleased at how things are working out and so proud of Jack for taking the high ground.

Sue- yes, the first thing my MO did when I had my first appointment was order two blood tests for estrogen. A hair follicle and estradiol I think they were called. I had told him I was sure I was through menopause because of my age, and since I hadn't had a period for almost 5 yrs! He said, that's fine, but I'm going to test it. Blood tests don't lie.

At first I fought him on it, since the studies definitely show AIs have the edge when it comes to protection from recurrence. But there are some advantages to Tamoxifen, such as bone strength and cholesterol lowering, whereas AIs can cause joint pain. They all cause something. In the end we decided I will do Tamoxifen for somewhere between 2-5 years, if I tolerate it, and when we are sure I'm through menopause for good, not just chemopause, which can be tricky, and also depending on any furthere trial data or new drugs available, and the remainder of the ten years on an AI.

There was a study that showed ovarian suppression could be done so a premenopausal woman could take an AI. But the SEs are hard to ignore, and when you drill down into the data, this practice only benefits women much younger than me

In summary, he says, if I can tolerate it, some combination of the two for a total of ten years. He suggested that by the end of that time there might be evidence to support continuation of hormone therapy beyond the ten years.

A lot of this I'm sure comes down to quality of life. And as we have learned from our vastly different reactions and tolerance from and to chemotherapy, I won't know until I try.

I have also read that if you are not tolerating whichever HT you are on, it is worth talking to your doctor and pharmacist about changing drug manufacturers. They all have generics now, but they are not all compounded the same way. You might have to switch pharmacies in this case, as they don't all sell the same brands. So better to try all the Tamoxifens in the marketplace first before you give up and go to an AI. Some people decide their QOL issues are too great and they stop taking them. But you must take into account that each person's case is different (what a surprise) and what might be a loss of a 2-3% benefit for one person could be way more for another. In my case, Tamoxifen for five years was estimated to reduce my chance of recurrence from 30% to 20%. So I will be highly motivated to find a way to make it work.

littleblueflowers

Katie, I just love your pix of your furbabies! I hope you feel better every hour!

SpecialK

Rads is a sticky wicket - there are some factors like number and size of positive nodes, being TN and not having adjuvant hormonal therapy available, narrow margins, proximity to chest wall or skin. My understanding of current NCCN guidelines are definitely rads after lumpectomy but which fields is dependent upon the particulars. For stage 1&2 post mastectomy no rads for less than 5cm, node negative with good margins. For masses less than 5cm, node neg, bad margins should consider rads, less than 5cm and 1-3 nodes strongly consider rads, more nodes or larger than 5cmrads recommended.