Chemo in July 2015

Mary, Congratulations! That is awesome news. You are going through so much, but are still such a positive inspiration. You go girl!

JillyB and Suzanne, congratulations on your last treatments. My last TCHP is tomorrow, too, then H til June (I think), I need to get clarification on that tomorrow. I also have managed to hang onto my lashes and eyebrows, though they've thinned a bit, which was much more important to me, too, than losing my hair!

Peabrain, i met with RO last week, but was not too impressed. I had two biopsied nodes that were positive initially, but they're now clear with chemo, so the MO said she wasn't sure if I'd still need rads. The RO said "it's up to me." What? I'm looking to him to give me his recommendation, so I can completely kick this sh*t! I'm sure I'll do it, not that I'm looking forward to it, but I want to know I've done all I can.

Gargengirl, it is very strange that you have not had any scans? Once i was diagnosed via mammo and ultrasound, they also did a MRI, echo and PET scan. After my 4th treatment of TCHP, MO ordered another round of MRI and PET to see how the chemo had worked and another echo to make sure Herceptin (H) had not damaged my heart. I'll now have an echo I know for sure every three months til June while I'm on H.

Sharazhad707, big hugs for you and wishing you a negative BRCA test!

Inkster, after my 4th tx my finger nails started to ripple some, and some of them turned a weird purplish and white color and a piece of my right index nail peeled off. I have been nervous to put any polish on even though I bought some Sally Hansen strengthener, but they do still seem pretty hard without it. Now, my toenails are turning colors some along with more neuropathy in my toes.

Big (((hugs))) for you all! You ladies are all such a wealth of information, strength and support. It so helps to know that I'm not alone and that together we will get through this journey!

all, re: the neuropathy/nail changes–my fingertips throb nonstop, now; my fingernails are ridged with numerous white striations across the nail bed, almost like a tree's growth rings, if that makes any sense. They're also starting to curl down in the corners. I've got definite neuropathy in my left big toe, and the area behind the toes on both feet (where they join the ball of the foot) gets numb intermittently. When I'm sitting with my feet flat on the floor, I always have the urge to tap/slap my toes on the floor because I can't stand the numb feeling. Bleurgh! Anyone else experiencing this?

I've noticed that my "ring finger" toes even 6 weeks out from my last chemo are still numb feeling. No other toes or my feet just those 2 toes.

Hi all...

Suzanne - Yippee for you - congrats on last chemo day! Hope your se's are not too bad!

For those suffering from neuropathy - just curious since I am just starting my Taxol journey & not looking forward to the neuropathy - are you all taking B6 & B12 vitamins & what dose? And have you tried L-Glutamine Powder as well? My MO advised can take 100mg of B6 and 500mcg of B12 twice a day. I have been only taking that dies once per day with food at lunch. During my 1st Taxol I had immediate painful neuropathy in my right thumb the day after treatment. I started both the B Vitamins & L-Glutamine that day & got relief within 24 hours. I just had my 2nd Taxol on Friday & sticking with B Vitamins first to see if they work & will add L-Glutamine only if needed.

Question for anyone that has had the Taxol immediate reaction .. On my 2nd one yesterday had bad reaction about 15 minutes in - severe lower back pain to where I could not move my legs! About 10 nurses swarmed in & added 25mg of Benadryl & Pepid and 100mg of Solucortef steroid - this all on top of the pre-meds of 20mg of Decadron & Pepcid & 50mg of Benadryl... I am feeling it today .. It worked within 10 minutes & I was able to finish the Taxol without issue. My question is for those that had a reaction - has it happened more than once ???

Thanks All for the Congrats & well wishes - the Rock the Ribbon event was amazing - wished I had felt better as I bailed before it ended ... There are some amazing people who work behind the scenes on this site & the things they want to do more for the future are an inspiration... Dr Marisa Weiss is just amazing - she is in the pic below ... Below are some pics - they took us to hairdresser who did something with my ugly wig that I actually wore it 😜 For the 1st time... Bottom pic is my taxol day yesterday - my boys were off from school & came for support & of course were scared to death when I had the reaction.

Dr Weiss with the 3 selected Ambassadors

Me & my family

NBC10 Newswoman Tracy Davidson was the MC (survivor)

Taxol #2 yesterday with my boys

Hope everyone is having a good weekend - hugs to all with crappy se's 😘

Mary

Happy Sunday. re: neuropathy, mine was very mild in my toes after the second tx of Taxotere and would come and go. It started in my fingers after third tx and was mild, but then has hung on in my finger tips and nails after the 4th tx. I'm taking B-complex twice a day which seems to help. I also took L-glutamine, but that didn't really seem to help me, so I stopped. Now, that I'm done with tx, I'm curious to see if it goes away and how quickly. My MO is confident that it will go away.

Re: nails, mine have become ridged, and purplish with white streaks. Yesterday, they really hurt with neuropathy, but today feel much better. My daughter couldn't stand to look at them anymore because they were becoming so ugly, so she asked to paint; them; much better.

My best to you all.

hi everyone. You are all in my thoughts and prayers. I'm doing pretty good. My last chemo was August 31. It was a long rough one but, I'm so happy to be done. My stomach issues and butt issues are trying to resolve themselves. My hair is starting to grow. Looks awful grey... Haha. My energy level sucks. I think I push a little too hard, but am back to work. Had a few customers give me a hard time about working bald. Assholes! I just want you to all know you are all on my mind every day.

Mary, super congrats on your ambassador nomination. I'm sure you were great. We had an event in September, and I couldn't hang around. I'm having some anxiety issues. Too many people, I only stayed an hour. It's getting better.

Thanks for all the info, everyone. I have so many questions still, and my group just doesn't have the answers. I have the whiles lines on my nails. Read on line it can come from chemo. No one else knew....

I finally got my correct sleeve for the lymphedema. Well, I'm swollen again, and it's almost impossible to get it on. So, I have to go back for more therapy. Wish my insurance would pay for the machine, but no luck.

Other than that, my life is slowly getting back to normal. I wish this for each and everyone of you. My docs are also not giving me any scans. Just watching blood work. Scares the shit out of me. But, I'm just going to keep fighting.

Love and peace to you all. Ruth

@ruthelizabeth, seriously? People gave you a hard time about being bald? How incredibly insensitive. I hope you made them feel bad. Glad some things are getting back to normal for you, though.

Ruth, it sounds like you need the shirt I ordered that says, "My Oncologist Does My Hair" I wore it to my last appointment and had my doctor chuckling

Finally the end is in sight. LAST treatment Thursday Oct 29. I have not been on computer because of internet connections. We live on Cape Cod until all the treatment is over and then will go home to Florida. If the wind picks up here, the towers go down.

I was a wreck with the Taxol. Bad neuropathy in fingers and toes. Im taking B6, accupuncture, using capsicam jel, and praying this isnt permanent.As a quilter this has stopped my work.

I will see surgeon again on this Wednesday before treatment to get on her schedule. It is a team approach at Dana Farber and they have been incredible. Hoping surgery is November.

My husband is able to walk now. It was a spinal stroke, very rare, but he is able to go on boat, play golf, walk, but has issues sitting. Despite the craziness of our health, we are so thankful we were here when everything happened and had excellent medical facilities available to us.

Hello fantastic women!

Twinkle - you definitely need a front zip because you will have TRex arms and can't lift them for a while. I got a front zip sports bra by Champion off Amazon. I liked this one best because it came down a little lower on my rib age so it didn't rub the scars under my implants while they healed. I was a 38DD and got the XL and it fit well after surgery.

mdoc - I have had a lot of joint pain with the TC, but not quite like you are describing. I am also having head flashes (hot flashes but only on my head). Are you combining these two somehow?

Ruth - I Love your shirt! I go bald or just with a little beanie to keep my head warm so I get a lot of looks and some comments. Most are fine, but some people definitely don't think

So check this out. Before surgery, they were certain I had no node involvement, but Surprise they were wrong and I had two micro tumors on the left side. All along they have told me no rads. But then I noticed that all of you with similar dx are getting rads so I asked my MO today. He looked a little embarrassed and said that rads are definitely recommended for me. They will add another 10% to no recurrence and a small maybe 2% to my five year survival chances. So I will make an apt with the RO and rearrange my thinking. I would not have known to ask this without you all.

Have I mentioned lately that I am super happy to have you all in my life?

On another note, I came across this study on a different thread and thought it was interesting. Adarkadept, I thought of you on this one - don't you have the auto immune dx mentioned?

http://www.geneticliteracyproject.org/2014/04/08/b...

Had my sixth TC treatment today and am riding my steroid high. Only six to go (and then rads. And then an ooph surgery. And then deported. And then a trip to the tropics. ) keeping my eyes on the end game 😀

Hugs to everyone in the chair or struggling this week!

Hey ladies,

Because of my genetic disorder, I'm now eligible to have regular breast MRI's done - I just had my first one (first MRI of any kind actually) yesterday. If you've never had one done, here's what it looks like:

It was an hour of holding that exact position and not moving a muscle while the machine made REALLY loud machine noises around me. They gave me earplugs and headphones to wear over them, and they piped in whatever I wanted from Pandora - I chose Howlin' Wolf, but the volume was so low and the MRI machine so loud that I could only occasionally hear strains of the blues in between all the clicking, banging and whirring. Having my arms over my head for that long was just starting to get really painful when the tech said "you're done!" I'll have results Wed or Thur and will use them to decide if I'm having a mastectomy after chemo. They're recommending it regardless, but I can't bring myself to do it unless it's absolutely necessary. I have a LOT of soul-searching to do.

My final Taxotere and Carboplatin are this Friday! I can't believe how excited I am, it feels like I can literally see the light at the end of the tunnel. Trying to think of some photograph I can take that will commemorate the occasion. I've taken a couple selfies during infusion (haven't shown them to anyone). It's tempting to take one last one with the caption "FINAL CHEMO!" but I don't want to jinx myself!! Continuing to go in every three weeks for Herceptin is going to be weird.

Speaking of head coverings (and the lackthereof) upthread, I've always been pretty low maintenance and, really, low-style. It has to be a pretty special occasion for me to even put on earrings, and when things are "normal" I never wear hats or scarves and rarely even ever tie my hair back or do anything other that dry and brush it. For chemo I have five wigs (three are cheap silly color wigs from eBay and two I got for free from the American Cancer Society) but it's been so hot and humid in Southern California and I've learned I hate wigs, so I haven't worn them more than a few times each - I have just worn my flatcap everywhere throughout chemo. I'd say 80-90% of random strangers don't even pay enough attention to realize I don't have any hair under it, and the rest don't mention it. Very occasionally I'll see someone looking at me for a little longer than usual but that's pretty much it. I was at a street festival the other day and a lady passed and said "hey, I like your style!" I almost said "it's chemo style!" but instead I just smiled and thanked her

Even my family and friends don't seem to notice or care much, just so long as I wear my cap and basic makeup (drawing on eyebrows and wearing mascara for sure!) That's also made it a lot easier for my husband, who I'm almost certain will cry tears of joy when he sees the first signs of hair regrowth. I've warned him it's likely to be very fine, white, and may even fall out before he sees anything like the real thing!

Mama26 - so glad you are doing well with Taxol - what's your secret LOL! Hope it stays mild for you. 👍

Peabrain - can't believe you were not told 2 nodes were involved - I was told that 10 days after my BMX... And ooph surgery - are you having ovaries removed - I am planning the same & making appt with OB after chemo ...

Cheesequake - love your pic & description of Breast MRI... I had one after my biopsies due to very dense breast tissue .. When they came in to tell me the test was over & I could not move my arms as they were dead asleep I asked them if a man made that machine - Holy Crap on a Cracker most uncomfortable test ever...

Hope everyone has nice/fun Halloween week .. My 9 year olds always excited for the mounds of candy & we are getting our new member of the family (Puppy Stella) on Friday - pictures to come 😜

Mary

when I had my MRI, the technician would tell me when I had a couple seconds' break-i guess it's a series of short tests. Every time there was a break, I shifted my arms just a little. During the tests, I counted sheep to pass the time!

mdoc - before the surgery, they were very certain that the lymph nodes were clear. During the ultrasound, the tech told me the nodes were in such good shape that she couldn't even find them. When I asked my surgeon what would happen if they were positive, he said we didn't need to discuss that because they were clear. So all my medical team made plans for my care based on that. After the pathology came back after the surgery, my MO adjusted the amount of time for chemo to reflect the nodes, but no one doubled back and rethought the rads. But being on this forum, I started to realize that everyone with similar dx to me is getting rads, so I asked, and sure enough...I will be signing up for 25 days of rads.

I will be removing my ovaries since I am BRCA1 positive. I already had a hysterectomy, so it will be a relatively small surgery to take what's left...Full on menopause, here I come!

adark - while it's good that you don't have the mutations, it's frustrating to feel like you probably have a mutation that they don't know to test for! How is your treatment going

Getting my last chemo right now!