June 2011 A/C & T Groupies Unite!
Comments
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I had the lump and then a PS came in and evened me out.... I stayed overnight (length of operation) and I was out of work for 3 weeks. No lifting after surgery,....
Take the time off. Seriously, you are getting operated on....
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Michelle, from what I read about DIEP and rads, it would be to your advantage to wait until after rads to have the DIEP. After my DIEP there was question as to whether I would need rads, due to the surprise tumor, so I had to dig in a little. Ultimately I don't need rads. If you had rads after DIEP there is like a 15% chance that the flap could have serious necrosis, plus the possible damage to the skin. I'm pretty sure there is always flap shrinkage from rads so docs will 'over stuff' the side to be radiated (if DIEP before rads). If the rads damage your skin, there is always skin that can be used from DIEP. You've already got the TE's in; my docs would rather put in TEs (or implant on temp basis) rather than radiate the flap. If you want to hear more on it, check out http://www.breastcenter.com/ and click on either the audio or video under 'know your options.' Both docs talk about radiation and flap reconstruction.
And I hope you don't need rads!
Hang in there everyone! My doc had me take pepcid days 1-8 each round. I took a probiotic throughout chemo and will continue. I like to switch them up so I get different strains.
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When I first started the taxol 10 weeks ago at first I thought I was in heaven after crawling thru glass with the AC. but as it accumulated in my body it has been difficult because the pain in my bones starts pretty much on the way home from my infusion. I take oxycodone with low dose tylenol twice daily for 5 days now. Its the only way I can stand and function. I also have to take twice the miralax ick ick ick.
Thats only the pain. my MO had to reduce my dosage by 20% starting last week for sores in my sinuses which caused bloody noses, neuraporthy in hands and feet.
My heart is with you all... this disease sucks, SE suck too and we are some tough women to survive them and still have the compassion to support each other here.
More of my journey at....daisiesarebetterthanroses.blogspot.com ~Laura
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There is no question that I need rads. I talked to my first RO today and he told me that my risk of recurrence without rads is 90% And it's still 40% with rads. So it's gonna happen. The question is which parts, how much, and when. I have an appt with the head of RO at Dana Farber on 10/14. I also have the appt with the DIEP surgeon on 10/5 and a PET/CT on 10/11. So with all that, I plan to go to Florida on 10/17 for a week and mull over my options, whatever they may be. It's so damned complicated!!! Yes, Beaglesgirl...you can say that again...this disease truly sucks!
I have done a whole bunch of research in the last few days. And believe me, there are no easy answers regarding radiation first, or DIEP first, or implant exchange first. I have partially filled TEs, which means that things will move around in there. Radiation planning needs to be precise and relies on things not moving around; otherwise, they don't get the geometry correct. If it's not correct, they can't radiate precisely where they are aiming, consistently. If they don't radiate correctly, you get no benefit from radiation, no reduction in your risk, no additional disease-free survival. I suspect that's one of the reasons that the PS usually overfills TEs before rads. That was an interesting research article, believe me.
Radiation can compromise some of the vascular system required for DIEP, thus adding to surgical complications. It's possible that the "cosmetic" damage from DIEP then rads is easier to correct.
Where's my magic wand when I need it???
Beaglesgirl - so sorry you're having such a hard time with Taxol! The end is in sight, if you can hang in there for those last two treatments. Hope you feel better!
Michelle
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Laura, I'm sorry your journey through this has been so tough. You're almost finished. You hang in there. Glad to know I'm not the only one with the severe constipation! My doc prescribed me a laxative today. Just took my first dose, so we'll see how it goes. I just hope I don't have bad stomach cramps. I hate those! I had to have iv fluids today, first week out from Taxol # 1. I was seeing stars, had low blood pressure, constipation (which has been a constant issue), everything! All signs point to dehydration. I hope the fluids help. Gotta remember to drink, drink, drink!
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Sleep!!! Formula 2 0.5 ativans at 10:30, then 1 7.5 temazepam capsule at 1 a.m. equaled sleep until 7:45. I feel so much better this morning!
Stephanie - drink lots and eat juicy foods! Get your favorite fruits and indulge! Melons, grapes, oranges, whatever. And don't forget soups - pretty much any kind adds to that fluid intake! It will make a ton of difference!
Michelle
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Hi Laura,
I agree with you! Taxol is not as easy as I expected. I'm on dose dense for 4 rounds so I thinkmy dose is higher than the weekly schedule! I had neuropathy, losing my eyebrows and eyelashes, extreme lower back pain, skin rash (despite 20% dose reduction at second round) and elevated liver enzymes although they went down. Because of the liver irritation with taxol my doctor told me not to take any meds to relieve side effects
I cannot wait to be done as well. By the way I love your blog! You have some very inspiring entries:) hang in there!!
Michelle- I hope everything works out for you with the radiation regimen! -
Just wanted to share some good news. I went for a run today! It was more like a "wog," about half walk and half jog... but I got out there and pushed myself (gently) and am so glad I did. I have been sick of all these beautiful days that have passed me by because I was too crapped out from chemo. And I'm still crapped out from it (PFC 9/15) but I have been so bummed to miss out on enjoying beautiful days like today to let another one go by. Now it's naptime!
Oh, but the neuropathy is my complaint of the day! I went about six miles and was aware of my feet every step of the way. Lost two toenails last night and thought that would be a problem, but surprisingly I am still able to wear heels and run so....whatever, I'm over it. The bone pain has lessened to the point I only need to take narcs at night (tylenol during the day). That's the update here.
Hope you all are doing OK this weekend. ***HUGS***
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Michelle, I think your research puts mine to shame! It sounds like you are in good hands and good for you planning a little vacation to mull over your options.
I can also share some good news like Kat: I spent the day yesterday at a Girl Scout camp with my daughter. It was set up like a fair with a few thousand people. I left the house at 8am and I got home 6pm. I had a great time! I slept about 10 hours last night, though. Just on Tuesday I was feeling so down: would I ever feel OK again? I've got a long way to go, but I feel better the last few days than the week after infusion. Once that aching muscle and bone pain is greatly diminished I am able to have a better attitude. I guess I'm PFC 9/14-----but I keep forgetting what PFC literally stands for! I still have tingling in my feet all the time, but it looks like my toenails are OK.
One day at a time!
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Paula, PFC stands for post final chemo. So you are now almost two weeks PFC! So glad you had a good time at the camp. Sounds like it was the kind of day that would wear anyone out! One day at a time indeed......
How's everyone else doing?
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What were you girls told about the neuropathy? I have my last treatment tomorrow and my hands and feet have gotten worse each time. After 1st time it came and went, second time stayed a little longer, and third time it has never left. My dr. told me that if by time I'm ready for treatment it hasn't decreased or just stayed the same he would think about changing my last one. He also told me that it could take months for it to go away and chance of some of it staying forever.
Also question about port. Last night my port (or should I say line from my port - just above circle) started to bother me and I can feel it under my skin, like a long bump (creepy) I am afraid I slept on it funny or did something to make it come out from whereever it was? Now skin is all red (been touching) I have always felt area where they stick needle but never anything else...
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In 24 hours I will be on my way to my infusion center for my LAST chemo session!!!!!!!!!!!!!!!!!!!!!!!
PFC can also stand for post f$#!&ing chemo...lol...depends on who you ask!
Dsnydawn - everything I have read about neuropathy seems to indicate it can disappear right after chemo, it can show up a few weeks after chemo, or it can be permanent. I have had just slight tingling in my feet, nothing in my hands. I have been taking the supplements that are supposed to help, but who knows if that has saved me or if I was just not destined to get it. I've been diabetic for 11 years and never had a problem. It's another one of those things where I don't think they know or can predict who will get it, why certain people get it, and what might actually prevent it. I've heard of someone on chemo getting neuropathy in the digestive system (gastroparesis) and required a stomach pacemaker to fix the problem. That is the extreme, of course, but it just demonstrates the variability of the side effects.
I think you should get the port problem checked out. You could have an infection, and it's something that you don't want to mess around with. I sleep on my tummy or either side, and my port hasn't been a problem. Mine is tiny, that may make a difference. But in any case, your resistance to infection is low so don't take any chances.
Hope everyone is having a good day!
Michelle
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kyroheal: I'm almost 3 weeks PFC, & I'm still losing eyelashes & eyebrows. I have almost none! My hair is starting to grow back, however. I have some soft peach fuzz going. I did go out & buy a super cute wig last week. I was so down in the dumps about needing a complete hysterectomy vs. just having my tubes & ovaries removed. I feel like after my surgery on 11/8, I'll no longer be a woman. I've had my boobs chopped off (no reconstruction) & now I'm getting my insides carved out. I'm so close to being a man that it's super depressing. The cute wig & a make up lesson from my local Bon-Ton store made me feel better. The underlying negative thoughts still remain, however. I'm starting to think that counseling may be in order.
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Bobbie Jo - So sorry your going through this..I thought you might be able to help me with a question regarding tamoxifin..I know that I'm supposed to take after chemo, but when I questioned MO about having ovaries out to take away estrogen (not sure if needed but have seen some women choose) but he told me that there is also a shot I can receive every few months to put my ovaries in "sleep" mode and than I would be able to take a less toxic pill (forgot name) usually for women post menopausal and with less poss side affects...I'm sorry to say I haven't been to gyn in few years and was curious who I should see to make an informed decision ..it's all so confusing and with my cancer fed 100% by estrogen I thought it was a no brainer but now I'm not sure ??? and afraid of any estrogen produced feeding any cancer cells and causing a problem in the future...UGH I am also loosing my eyebrows and lashes, I thought I got away with keeping them, but I have my last taxol tomorrow and guess not..glad to hear your getting some hair growth..and as far as counseling..I think we could all use it ...sending you a hug
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I have "0" eyelashes, a couple of brown eyebrow hairs and a crop of transparent eyebrow hairs that can only be seen close up in a mirror if I look to the side. Their only use is to help me figure out where to fill in with the lash powder or a pencil. And I have transparent hair on my legs, now, too. It all closely matches the transluscent hair on my head...lol
Bobbie Jo - counseling really is a good idea, or a support group. What we've been through is a whole lot like PTSD, and therapy can help. Many people questioned why I would get reconstruction at my age and my answer has been that I wanted to look and feel as "normal" as was possible despite having breast cancer. It's such a personal decision, and what's right for one person is not necessarily right for someone else. But in the end, neither breasts nor ovaries nor any other body part make you a "real woman." It's what is in your mind and heart that matters. {{{Hugs}}}
Michelle
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Dawn, I am also still experiencing neuropathy - about two weeks PFC. It's funny, it's kind of like it has continued to build through the Taxol treatments; I don't remember it being this persistent in August when I first had the T. Unfortunately I'm not very kind to my feet. I wear heels almost every day and go out for walks and runs daily too. I am praying the neuropathy isn't permanent but beyond taking supplements as Michelle has mentioned, I don't know of anything else I can do....
And ladies, I too am still losing eyelashes and eyebrows. I figure I didn't start losing hair until about three weeks after the first chemo, so it will probably be at least three weeks *after* the last chemo before I could expect for that to lessen. Bummer. I was talking with one of my nursing home residents yesterday about her food likes. She from Italy and said something about some kind of Italian food she likes... I asked her to describe it for me, saying that as an Irish girl I am not altogether familiar with all kind of Italian food... she kind of squinted at me and I realized that without my red hair (and not my red eyebrows), it wasn't as obvious as it used to be!Michelle, I love your new picture. Good luck with your LAST CHEMO!BobbieJo, it's totally understandable that you would be feeling blue about all these changes. I don't really know what to say but your post makes me think of a therapist friend of mine who said something along the lines of... it's practically impossible to experience something this devastating without needing some kind of psychosocial support. That support might take different forms for each of us and if for you, it includes counselgin, by all means explore that option! Big hugs to you!Big hugs to ALL of you. Hope everyone's hanging in there OK.
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Still down and had my last taxol last wed. I am getting a 99.5 fever/my feet and hands horrable/very nauseated /sore throat. Extremly tired .COME on when will get over this last one??
The doc called me in a antibiotic yesterday.
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Justme - congrats on the last Taxol, so sorry it's got you down and out...did you get Neulasta at all? I'm hoping my last one tomorrow will be relatively uneventful. But it's getting to be "cold" season. Both my daughters have had colds but have stayed away from me until they were past the contagious stage, so I've managed to stay healthy so far. Really hope you feel better soon!
Hugs,
Michelle
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Glad to see everyone here are still doing okay...I have had 2 Taxol treatments with 2 more to go...they were not kidding about the bone/joint pain. I now know, for me it will last from day 2 -5. I still managed to go to work yesterday and today..(since my last round on 9/23). I was suprised today at work by several co-workers who bought me a heating pad for my legs. I thought it was so nice of them - We are all currently in a training session so I ususlly sit with my legs stretched across another chair in front of me to help relieve some of the pain. The heating pad helped immensely! I am amazed at the small acts of kindness that have been shown to me lately, and am grateful. I'm tyring to think of a way to thank them, but need some ideas. I don't want them to think it went un-noticed.
@LuvRVing - i'm so excited for you for your last round of chemo! I hope everything goes smoothly.
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Dawn, what you are feeling is the threading of the catheter from the port through the internal jugular vein. I could always feel mine. My chest, arm pit, back and neck hurt the day of infusion, and sometimes when I sleep on that side. It shouldn't be red though.
Michelle!!!! You need a big celebratory weekend!!! I love your avatar picture as well.
BobbieJo, I'm right there with you. I had a total hyseterectomy last year, and now struggling with what's coming. Mentally, it's so difficult. I started some alternative/complementary healing modalities this past week. It hasn't stopped the thoughts, but it sure has helped the effects the thoughts have had on my body. Acupressure helped me relax my mind and my muscles. I see counseling in my future. If you can, look for one that deals specifically with cancer survivors.
My hands were like sausages and so difficult to bend my fingers. The edema is finally going down, but my eyelids still look like Angelina Jolie's bottom lip! Had to go back for labs today, and needed neupogen. Going back again tomorrow for another.
I feel better than last week, so I'm grateful for that!
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Angelina Jolie's bottom lip - ROFL, Rose!
So, apparently, I've had the wrong hair color my whole life
I've gotten so many compliments on that picture, with that $25 costume wig and the black hair. Gonna have to give the really dark color some serious thought when I have enough hair to think about it! -
Well went for my last taxol today and Dr & I agreed that we will skip it today as my neuropathy is still pretty bad. I will go in next week and if it has gotten alot better I will have 4th and final treatment. If not I will be done!!!!! He advised me that of all things I have done or going to do ,that taxol is last on the list. 1. surgery 2. AC 3. tamoifin/rads 4. taxol So feels that the chance of permenant damage is not worth it. I totally agree. Update on my port issue...I had blood drawn from port & arm (sent to lab to see if any infections) haven't had any temp . Dr thinks looks sort of like poison ivy?? very strange place, but I do remember scratching it that area..who knows..I am taking an antibiotic just to be safe ....not sure if I'm gonna celebrate just yet, but Dr feels I'm done. I was a little upset, because the nurses blow bubbles to signify you finished and I know it's childish, but damn I really wanted my bubbles LOL so on the way out of the office, the receptionist gave me a small bottle of bubbles...they are all so sweet and have become friends..Hope you get your bubbles today Michelle!!!!!!!!!!!!!
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Dawn, Take a probiotic and rinse your mouth with baking soda and salt mixture! The antibiotics I took gave me thrush! Hope you get lots of relief this week!!!!
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I have my 3rd Taxol yesterday (9 to go... Yeah! I am in single digits now) . WBC and hemoglobin went up and after reading all your posts I have to count my blessing because definitely weekly Taxol is much more easy than AC (if you don't add Herceptin). So far NO SE's, life is almost normal
BobbieJo - Do you have any studies about the benefits of having complete hysterectomy and/or tubes & ovaries removed? My MO, who is brilliant, travels around the country speaking in seminars and trainings proving that there is not need to remove them, because with or without surgery you will have to have a hormonal therapy. She always presents case studies of women that removed their tubes & ovaries follow by hormonal therapy and they have the same survival and recurrence rates of those that just use hormonal therapy. Well, she is a breast cancer researcher and she needs more than one study to convince her and she adds "facts" and long time results. If your MO has those could you please provide the names of the studies or info, so I can do my own search? Thank you.
Congratulations to all of you that are ending your chemo! I still have 2 more months, but as long as I do not feel "uuuggghhhh" I will be more than fine!
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Nice to read up on how everyone's doing. Dawn, I love the idea of the bubbles!! Hope you get to see yours
Rose, the heating pad idea is awesome! I agree it's hard to know how to thank those people who have been just incredibly supportive throughout the journey... Michelle,yippee on your last!I've had a few really good days and I finally feel like I'm back to myself. A few chemo brain moments and running, climbing stairs, etc. has left me feeling a bit wiped out... but otherwise I'm doing not too shabby. Hope that gives the ones still trucking through it some hope. Signs of life from the other side!
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My DD turned my chemo suite into a Parisian bistro serving a continental breakfast.
Fresh fruit and eclairs
DD with the rest of her fare - an assortment of French cheeses and baguettes along with some dark chocolate and sparkling apple cider to wash it all down
My "movie star" look ready for a culinary trip to Paris, followed by the real deal next spring!
One last time!
Done, finis! Had to shed the wig, it was getting irritating!
My DD, myself and DS - we left to the sounds of Pomp and Circumstance, playing on DD's phone. These folks don't have a "ceremony" so we made our own, and every one of the staff came to hug me. We taught them a few things - they won't forget us.
And I do have to go back tomorrow for a Neulasta shot, WBC was only at 5 and I have been dropping at least 9 each time, so gotta do it.
I go back to the MO in six weeks for a followup. In the meantime, I've got a host of other specialists appts and the PET/CT scan.
Happy news - my liver enzymes seem to have fully recovered so I'll be enjoying a couple of those umbrella drinks on the beach or by the pool next month.
Dawn - you deserve your bubbles!!!
Hugs to everyone! If you are not already there, the end is near and you can do it!
Michelle
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How fun Michelle! Thanks for sharing. You are beautiful
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Loved it, Michelle!!! What a great way to celebrate!
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I got my report back from the mamagram ultra sound and MRI. The mamgram didnt even see anything. The ultra sound and MRI 2.6cm x 2.1 down to 1.0 cm x 0.4cm my onc. said it was a 75 % shrinkage . He was happy with it. I was so sick at the time i didnt really respond i was hoping for a 0 left i guess but i was sick.I got some fluids /steroids/nausea meds and was better after the 2 hours of letting that get in my body.I am better today my feet still hurt but i guess theres nothing we could do bout that . I go see the surgen monday to schedule the surgery .I am excited and nervous i dread it but look forward to it. OH meee
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I love the pictures!!!! I wish i knew if i got 6 more to go or not i might be done i might not so i didnt do anything my last of the 6 but pray . I dont want to go back to that chair but i will if i have too.
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