Starting Chemo September 2015; join us!
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Although I have not posted in a long time I do spend time reading most of the posts. I always learn so much, shed a tear, emphathize and truly enjoy knowing others know what I am going through and how I feel.
In chemo right now, #4 of 12 weeks Taxol, Herceptin and Perjeta added every third week. I did learn a solution (almost) for mouth sores which were really causing me problems. I had done the baking soda salt water swish which did not help and have the RX for magic mouthwash. But now I dip my toothbrush into coconut oil (the organic solid version) then into baking soda and brush. I also use about a 1/2 tsp or more of coconut oil only as an 'oil pull' swish. I do this 2x a day for at least 10 mins each. Wow, what a difference! My taste buds are better and mouth sores minimal. I highly recommend trying this solution! Oil pulling is supposed to remove toxins. Search and read some of the good articles about this method.
I find myself more emotional and fatigued on this treatment round vs the AC round. I am usually very positive and upbeat but have had a couple of outbursts so unlike me and I hate it! so glad I am not the only one.
I won't finish this round until end of Jan. Then on to rads. thankful for so many posts about what to expect. Thank you all for being there!
Wishing all of you a peaceful weekend with naps
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Hi jlcl. We do care and invite your posts! I also mostly just read the posts but not as frequently as I might. So, when I do, it's too much to try to comment on all the posts made. I will offer an occasional comment or question but mostly learn from others and feel less alone with the process and with managing SE. I hope you will feel welcome to post. I would like to hear from you!
So happy for everyone finishing up their chemo! I have one treatment to go on the 17th and am so eager.
I tried acupuncture yesterday. What a strange and unusual experience. I visited a lovely older Chinese woman who practices traditional Chinese medicine and herbs. I went there looking for help with my neuropathy. The treatment went fine, but of course I started crying mid way through. 😩 I did not expect that at all. She responded very compassionately.
She said it will take three or 4 visits before I will see results. She also wants to help with hot flashes, getting rid of toxins post my last chemo, then building up my system again. No herbs for now but I believe she will combine them with the acupuncture post chemo. She advised me to drink dandelion tea (detoxifier) now and continue juicing - particularly with beets and carrots. When I left, 90 minutes later, she looked me in the eye and said, "I want to help you." and hugged me. Very sweet.
--Just thought I'd share.
Once again, I support you all and I pray for your strength and health
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Damn. I finally had to deal with the fact that my arm was swelling a bit. Started to notice something a couple of weeks ago and should have dealt with it right then. Was really hoping to avoid lymphedema but apparently no such luck. I had 9 lymph nodes removed when I had the mastectomy, 5 of which were cancerous. The surgery was on July 30.
Went to the physical therapist yesterday and my right arm is now wrapped in a cumbersome bandage, which I'm supposed to wear all the time for the next 2 or 3 weeks. At that point, assuming that the swelling has improved, I will be fitted for a sleeve. Hopefully, we are beginning this process early enough that it won't get too bad, but dealing with it at all is bad enough on top of all this other crap.
Meanwhile, I can't figure out how to maintain basic hygiene since the only things exposed are the ends of each finger. How do I wash my hand without getting all this stuff wet? Do I just do it once a day when we re-wrap the bandage? Just wear a vinyl or latex glove all the damn time?
5 more weeks/doses of Taxol to go. SEs still relatively minimal other than feeling tired most of the time and the runny eyes. A few aches and pains here & there but they're not excruciating.
Just seems like one thing after another and am getting quite annoyed with all of it.
Glad you all are here to vent to. I'm planning to stick around this place once I'm done with chemo and I hope most of you will stick around as well!
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Jan - I hope you post! As others have said, I have times I'm too fatigued (or too tied up at the infusion center all day!) to read and respond to every note. But I take a great deal from everything I read - many posts make me feel so much less alone, which I deeply appreciate.
Valerie - I finished round 4 of 12 weekly Taxol treatments this week and there are a couple of other brave ladies on roughly our schedule. Welcome! I am finding Taxol less difficult than A/C, but certainly no picnic. Thanks for sharing your success with coconut oil - we have some on hand, so I'm going to try that for my remaining mouth/throat soreness.
Shelly52 - Congrats on the fast-approaching final chemo!
A restful, SE-free weekend to all....
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hi Jan - I think I missed something, but we DO care! This board moves fast, it can be hard to keep up.
For those dealing with lymphedema, I'm so sorry. It's like, really? Something else?
I'm waiting for my blood work to see how the DD treated me vs. weekly Taxol. I'm the only person under 60 here, as always. This makes me feel like a circus freak.
Today, I'm going to work on gratitude. I have amazing insurance and yet I felt angry about my $40 co pay.
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aww southern. Maybe try melatonin for sleep? I think it's supposed to help with the hot flashes too but I could be wrong.
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Sad mommy moments last night. We had a power outage and the outside of the stored breastmilk bags smelled like they had all spoiled. Thankfully it looks like it was just a smell carried over the from the nearby sausage package; Michael drank his milk happily. Looks like I need to pick up the pace in using them up if we keep having outages. Later, he woke up because he lost his pacifier. I retrieved it and cradled him in my arms, wishing I could nurse him one more time. All I could do was sing him to sleep...
Song of choice: Tomorrow (Annie); also Maybe, Oh Holy Night, and Silent Night
2 days post infusion #9 (5 of 12 Taxol). Hematecrit was at 31 (Yay!) - climbing 2 points every week. My neutrophil count was at the bottom range of "normal human" - nice change. Face was flushed red yesterday. Today a little morning nausea that passes with food. Less than 8 weeks to go. Hangin' in there.
Lymphedema doesn't sound like fun. *hugs to everybody dealing with it*
Favorite sleep aid: Lorazapam, best known as Ativan. 6 hours of guaranteed sleep.
I'm intrigued by the DD Taxol; but weekly seems to be keeping the SEs to a minimum. Trust me, you're not the only one under 60 there - we just all look old without our hair; my eyebrows are gone and I look WEIRD. I'll post pictures shortly. My 25 year old cousin getting treated for testicular cancer got it double - young and the only male in the infusion center. I tend to take stock of the waiting room and take the long way around to my infusion bay. I run into girls younger than I am with some rare disease; the last one was ~24 and getting a full week (8 hours a day) of transfusions and she had been getting treated since Christmas 2014. Done by Christmas 2015 was sounding really good to me - as soon as I said that (And had told her my 5 year plan), she said it sounded good to her too.
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Jclc - We do care I know I read ALOT and post 50% of the time. Sometimes I don't respond because I have no idea what to say. (which i find happening more lately
)luzeelu - I don't have Lymphedema but I am getting a sleeve to travel with me or keep with me in case my arm swells. Do you have to keep the bandage on even when you sleep? I heard differently but each person and PT is different.
CajunQ - HA the ordeal of all the doc apts and sitting in all those waiting rooms, I too felt like a freak. 60+ yr olds would stare at me like I was waiting for my mom to come out of her apt and then they were shocked when my name was called to come back. Oh and the radiation waiting room, that was the worse, Even a man waiting to get zapped left to take a smoke break! Really? you are here for that reason ( I presume) and you can't wait.
I do find myself wondering what others have where I get infused. I see alot of guys get infused and assume they are colon cancer. Then I see women under 30 and they have their hair so i guess it's lymphoma. Since this started people have told me that someone they know is going through it. I can't believe how many are under the age of 45. The numbers are climbing and someone needs to solve this b*tch!
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I was given a sleeve for free as part of my post op sx kit. If you fly or go to high altitudes, you need to wear the sleeve on the arm where nodes were removed or you're at risk for lymphedema. So if you had nodes removed and don't have a sleeve and will be flying at some point, get the sleeve to help prevent it.
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Yeah!! Congrats!! Shopgal!!
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Southern I didn't take my last steroid, I felt so sick I forgot all about it. And nothing was different it was all the same . Same s$iting feeling .
Anyone notice there nails changing shape color? Mine seem wider like I'm not getting enough oxygen?
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congrats to you also aga. I see you finished the day before me.
For those who still have to finish taxol whether DD or weekly wishes for no bone pain or neuropathy. I will say I didn't miss my nasty neulesta yesterday. I hope my counts stay high and I do not get sick before my deportation on the 21st. I can't wait to give back this damn port. I figure it came from the hospital so it can go back there. It did its job. I was grateful to have it, but I am so ready to sleep on my right side and give up the discomfort in my neck.
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aga my fingernail beds seem bigger too. I think it's from the cuticle not growing maybe. I am doing my own nails and keeping them painted dark so I don't see the weird banding nod dark blue/black lineson them from the taxol.
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my nails seem drier, but I'm only on my 2nd dd taxol. I can see how the cuticle is not growing like the nail itself. I get itchy hands every now and then with this 2nd dose. They act up when i wash in hot water or exercise. It goes away when i take claritan and when my hands are exposed to cold water or cold weather. Anyone else have this?
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Aga, I've had some problems with nail discoloration on my thumb. It seems to be getting a bit better now than I am PFC. I do intend to ask MO about it at my next followup appointment next week, but in the meantime, I am applying coconut oil twice per day...which is supposed to help.
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I've been ripping my toenails off because they're gross. They were gross before, though. Not allowed to use anti-fungal cream or pills while nursing. Not really allowed to use them while on Chemo either. Weeeee!
Ok, pics! What an old lady I am now. It's scary. A smile makes all the difference, I think.
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DLcygnet - pfftt you look 20 with or without hair
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ElTigre, I have to wear this compression bandage all the time (rewrapping once a day) for the next 2 or 3 weeks until the swelling goes down. My arm isn't badly swollen, but it's noticeable if you look closely. Once the swelling is down, I will get fitted for a sleeve, which the PT said I would wear during the day but not at night. My poor chemo brain can't recall the reason for that at the moment.
The bandage is awkward but not awful. I was able to sleep OK last night with it on, which was a bit surprising. Sure would hate to have to wear this in hot weather!
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encountered this cake as we checked into physical therapy today
Hungry?
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lisa you have a great shaped head like me and rock the bald gal. I can't stand my no or little brows. The eyelash thing I can get past with eyeliner but I can't seem to get the rightamount of eyebrow pencil lined on my brows. It's either too dark like Joan Crawford or too light. I just hope what I have up here sticks around.
I'm a happy camper this afternoon. Cleaning for a reason came this morning, my house is clean, and I am vegging on my couch day 2 post last chemo watching white Christmas.
And thanks southern.
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Southern - Yuck - Sorry you had two awful days and hope you have a much more tolerable weekend.
Aga - Yes - I had weekly round 4 of 12 of Taxol last Tuesday and my thumbnails are getting discolored. PA looked at them and said this was a common Taxol SE.
ElTigre - I've also had severely dry fingers, tips and cuticles cracking and peeling. PA thought this was a follow-on SE from A/C. I've been moisturizing once per day or night using lotion and food prep gloves and they are healing. I'm also being more careful about using either food prep gloves or heavy dishwashing gloves when washing fruit, prepping food, etc.
DLcygnet Lisa - You smile is gorgeous! Love your look
Shopgal - I'm far behind you and have surgery after chemo. So my soonest de-portation (heh) would be April-ish. But I'm with you - I HATE this thing. I'm always uncomfortable and aware of it. Hope I get the green flag for having it removed.....
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Dlcy you look great both pictures!! First picture makes me smile!
Well I guess it's chemo giving us all a nice manicure lol
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Home from the hospital, yay! But 50,000 more appointments scheduled now...
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luzeelu, I did several weeks in the compression bandages. There was no washing of hands, although I got pretty good at the single hand wash. It's really annoying. I've had the compression sleeve for a couple of weeks, and it's much better. The BS removed all of my level 1&2 nodes, and it ended up only being 7. But it was all of the nodes in my armpit. Apparently I needed them. So far, lymphedema has been a pain, but manageable.
I have DD Taxol #3 on Tuesday, and have some nail spreading and discoloration. More attractive every day
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Hi Scotland
More attractive every day made me smile. I miss my eyelashes and brows and my feet toes and all are blistered. I have not given up my heels however I start the day off in them and take flat shoes for arvo because of the swelling. Struggling to feel human let alone feminine.
Can I ask you if your lymphodemia will impact on flying. My husband and I had started travelling and I would like a holiday after this. We are in Perth Australia so flying to Europe is like 24 hour trip. America is off the list now Im so sad but travel insurance will be difficult impossible really. Vegas would have been perfect.
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Lisa, you are adorable!
Southern, that sounds like hell. What is AD?
Skittle, so glad you are home. I know you were missing your munchkins.
I really am the only one under 60! I live in an area with a ton of snowbirds and they all at my infusion center, lol.
I am so mentally foggy. I can't remember anything and I have to look up how to spell things. Chemo or menopause?
Doctor gave me some Percocet. Going to sleep tonight! Counts were so great!!!
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lisa, I only moved to DD because i wasn't tolerating the weekly without neupogen, which they won't give prophylactically. So I traded much worse SE to get Neulasta so I could be sure there were no further treatment delays. My ANC hit .1 and I was refused trx.
My doc says same prognosis either way unless triple neg, which is better off weekly. My friend who just finished neo adj for triple neg also did weekly. I'm getting an extra "dose" of Taxol now.. One weekly + 4 DD. Fortunately, no neuropathy. Just excruciating bone pain and headaches. 0 -
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jabe, I almost spit out my coffee!!!! Love. Morning, ladies.
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I'm right there with you SouthernCharm except one day ahead of you. I hardly left the couch all day yesterday. Watched a bunch of cheesy Hallmark Christmas movies and slept off and on. I'm hoping to crawl out of the hole today which is my normal routine. The best part is ONLY ONE MORE CHEMO! We can do this!
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