January 2016 Chemo!

Paxton29

Just wondering how everyone is doing. Anyone have any lingering problems attributable to chemo?

Wendiwithani

Hi, Paxton! Checking in here...doing well. Finally feel like I have normal energy levels again. I am 22 weeks PFC. Still undergoing Herceptin treatments every three weeks until January. Had a bone scan recently...clear. Had a colonoscopy last week...clear. Exercising daily and eating well in the hopes of having my flap reconstruction scheduled ASAP.

The only lingering problems I have from chemo at this point is one watery eye (ANNOYING) and toenail falling off issues. Other than that, I feel good.

How are you?

Frill

Hi, all. I'm only about 9 weeks PFC, so I'm still in the midst of it. I start rads Monday, which I think I'm looking forward to less than chemo. Chemo seems like it will all go away, at least eventually. Rads just sounds like its forever. *ugh* My hair is growing, although not as fast as I'd like, and the whole nail stuff....but I just keep tea treeing everything. They probably look better than I think they do. I'm not used to seeing my nails without a perfect mani pedi, so this is a super shock. My eyebrows are filling in!

Tomorrow is my DX date. I think I'm in shock. It's my mom's birthday today, she passed away two years ago. The past two years....my grandfather passed away, two close friends (one from cancer, the other suicide) died, and then my favorite great aunt. I ended a ten year relationship. I was working 100 hour weeks for I don't even know how long. Then I reconnected with a guy and moved out of state. Lol - all the things you're not supposed to do after a death.

I just keep thinking about Halloween last year, what I wore. I can't wear it this year. This Halloween I'll still be in rads, I won't even be home. Just weird.

What a difference a year makes.

LifeAloft

Doing well here, I believe I'll be finished with rads at the end of next week. (Frill, believe it or not, it goes pretty fast!). Still have a tiny bit of neuropathy in my fingers and toes, not enough to bother me too much, waiting for my thumb nails to grow in. Hair is doing ok, growing slowly but surely.

I've been in a pretty good place now that rads is almost done. Really looking forward to getting on with my life, I'm sure the worry will always be there, but I'm going to do my best to not let it stop me. I'm looking at this as a new lease on life, looking at a career change that I've wanted to do for years and always made excuses...no more excuses!!

Love and hugs to you all!

Kelly

mltdd

Last chemo was March 24. Still have neuropathy in fingers and toes (but it's getting better), insomnia and joint pain. Nails and hair are starting to go back. Rads were so much easier for me than chemo. Approaching the 1 year anniversary of the day I felt my lump.

DFWFLYGIRL

Hey ladies....so good to see how everyone else is progressing into 'new normals" and getting to great milestones. I am trying to get settled into hormone therapy (ALs) .....working out....working and flying again for work. I am doing pretty well...mostly joint pain and mild lymphodema but grateful to be at this stage almost 1 year later like many of you!!

LoveMyVizsla

Saturday will be my diagnosis anniversary, but I knew before then. Last chemo was 7/14, still have 9 more rads to go, including 5 boosts. My first three month MO follow up is on the 20th. I am now on a different chemo, pill, for my lupus flare up. Thankfully, no noticeable side effects, other than some tingling spells in my feet.

My lifted nails have mostly grown out, except for that one toenail that still looks the same. I still have a tiny bit of neuropathy in my thumbs. I'm still down 8 pounds from chemo, but happy about it.

Hope everyone is doing well

Valstim52

Hello All

Checking in. I'm 24 weeks PFC and though treatment was tough, it seems now to have flown by. (can't believe i'm saying that). Had a mild stroke. That has really set me back, but getting good therapy. Have some neuropathy in fingers, hair is growing like crazy. Lost 3 toenails all within a week.

Overall, I can see light at the end of the tunnel and I refuse the recurrence elephant to take over the room. So nice to hear from you ladies.

my dx anniversary is december.ugh for that.

Cathytoo

Hi Everyone....In eight days it will be one year since I found the little lump that turned my life upside down. May 18th was my last chemo. I finished rads in July. I've no lasting effects from any aspect of treatment. I have energy, sleep well, no nail lifting ... AND...my hair is growing, but not as fast as I would like. Still wearing my wig. Bought a new one on QVC, of all places. It's the most natural of any I've been wearing all these months. i'd love to ditch the wig, but it will be some time before I feel comfortable with my new hair. Breast cancer and recurrence is on my mind constantly, even though I am keeping busy and living a full life. The days are flying by which makes me think that soon it will be the two year danger point. Wish there was a pill that would get rid of those thoughts. But, bottom line is that we are still here...much different, but still here. I feel strong, brave, confident and worried all at the same time. I am looking forward to hearing good news from everyone in our group. I feel like you are all "family". We've shared a life changing experience. I'm sending each one of you a big cyber hug. ❤️ STAY WELL, STRONG AND HEALTHY‼️

FLBuckeye93

Your updates are encouraging! I feel good overall, but am trying to figure out what to do next. I had a surgical biopsy on my right breast, which confirms I have no cancer (Yay) but I do have atypical lobular hyperplasia. I enjoyed a week of feeling free from cancer being a black shadow, and am now back in the process and anxiety of the increased risk of developing cancer in my right breast.

I'm frustrated because I can't find much information about these cells being present after a person has had chemo and is taking Arimidex.

I'm curious about a few things that maybe some of you would know about:

1. What is a double mastectomy with reconstruction really like?

2. Has anyone been to MD Anderson for cancer treatment or a second opinion?

3. What other cancer centers are well known for their breast cancer treatment/research?

My surgeon and oncologist are wonderful, but I feel I need another eye on what is going on to prevent further chemo treatments etc.

I am grateful for this forum and am grateful at how much we have helped each other.

This is my new favorite, kick cancer's ass, song

Bdmommy

Hello everyone! So glad that everyone seems to be moving forward from our chemo experience, whichever "moving on" each of us is going through!

FL Buckeye93 I can weigh in on a couple of your questions. I did actually contact MD Anderson in Texas to discuss getting a second opinion after my surgery when it resulted in a positive margin. The center was so busy and backed up that they said it would be at least six months before they could even see me for a consult. They were only trying to get patients in if they were stage 4. They did suggest that I could try the new one that opened in Jacksonville, FL; which is actually only 3 hours away from me. They said since that location was new they may not have booked up months in advance. I actually decided to just go ahead with the treatment suggested by my MO and RO as I trust both of them completely. It was just that like you, I felt I needed someone besides myself to "verify" they were continuing down the correct and inly path since I am triple negative. I elected to have a bi-lateral mastectomy with reconstruction even though I only had cancer on one side. I just felt I had to do absolutely everything to reduce the odds of a recurrence. I am very happy and content with my decision. The difficult thing for me has been having the tissue expanders for a long time because I have to now do seven weeks of radiation before we can do the permanent exchange. Without radiation I would be having the exchange surgery the end of this month. Radiation has postponed that until probably May of next year. The worst part of reconstruction are the tissue expanders, but I just keep focusing on them being temporary. For me we had to expand the cancer side fully before I started radiation which they wanted to start promptly after surgery. This resulted in expanding twice as fast as normal and it was very painful, but it was only painful for about three days after each fill. I have started radiation and after it's completion we will then fill the other side at a much slower rate. The positives of doing both sides is that when completed they will be a closer match to each other in size and orientation. I had always wanted a reduction so I am getting smaller ones than I started with. Also no matter how old I get, gravity will not take my foobs down with it! And no more bras to buy unless I want to!

I completed my chemo June 2, had my BMX and TE done on July 15. I have started my RADS and I have completed five treatments. I feel like I have not gotten one chance to get back to any sort of normal since I am going from one treatment to another. My hair is finally growing back but it was not gray when it fell out, but now ugh! Also my eyebrows are coming back which is great, but my goodness they are growing every which way, pointing here and there! I do have lingering neuropathy in my fingers and toes. It makes it difficult to hold on to the bar during RADS. Hopefully that will get better over time. Still can't sleep at night for any length of time without waking up, still have hot flashes and joint pain, still don't have normal fingernails that grow normally. It is so frustrating!

One thing I can't figure out is at what point do I say "I'm in remission"? I mean I had a BMX but am still in active treatment with RADS. I feel like I need some kind of test to say, there is no evidence of cancer, but being triple negative I just feel I will never get that confirmation. My one year DX anniversary will be Dec 15th. I am going on ten months of constant treatment and am really upset because I still don't fell like I can call myself a survivor, maybe after I complete RADS and my exchange surgery I will feel that way. Does that make any sense at all or I am completely crazy? Last week I lost my Aunt to cancer that I was very close to. It was a different kind of cancer, but still brings al those doubts and worry that I locked in the back of my mind back to the front and center. Also a young mother in my support group passed away from triple negative breast cancer after a three year fight a couple weeks ago and I can't get that out of my mind. Moving forward after treatment seems more of a challenge than getting through treatment itself!

LoveMyVizsla

Bdmommy, I'm a TN too. My MO told me I was cancer free after my first surgery. That wasn't true though, as I had a re-excision that found 2mm more of DCIS. I would say you are NED after rads.

Had my first of 7 boosts today. 6 more, and I'm out the door

Bdmommy

LoveMyVizsla how many RADS did you have? I am scheduled for 30 whole breast/lymph nodes/chest wall and then 6-8 boost. Did you have any skin issues and if so when did they start? Just not sure what to expect as I had a horrific time with chemo and surgery.

Myraknits

so good to see everybody on this end of things! Definitely light at the end of the tunnel. I have 3 more boosts and then all the big stuff is DONE! Chemo/surgery/rads. Herceptin till February but that's about it. The hardest part is remembering, usually too late when I'm exhausted, that I'm still not 100% back. Sometimes I wonder if I ever will be. I tried exercising but can't get more than 10 minutes done on the treadmill at a slow speed. Then I'm wiped out for the rest of the day. I used to do an hour. When I get frustrated, I remind myself of how lucky I am to be here, be cured and have survived this whole ordeal. Other than a watery eye and numbness from armpit to elbow under my left arm, I'm in good shape. I guess it will just take some time to regain some strength. Nice to have hair, lashes and brows again! Hugs all around.

LoveMyVizsla

Bdmommy, 23 whole breast, 7 boosts. I did have skin issues, but it was because of my lupus. My issues started on day two. If it hadn't been for the lupus flare up,I think I would have had pink-reddish skin and mild peeling. No blistering, which I half expected because I have large breasts. I was really freaked about before starting rads, but it really hasn't been too bad. Good luck!

sarah_sunflower

Hi everyone, glad to feel the positivity and its such a treat to come back here and read all your comments and see how far we have all come.

Like most of you, I have come to one year anniversary to when I first found my lump and next month is one year from when I got dx, they call it 'cancerversary' I feel mixed emotions,I can now fully understand what people meant when they said 'a lot can happen in a year'.

I found a small lump in my armpit couple of weeks back and it got me running to the doctor and thank God, after a scan they confirmed it benign. I suppose every bump and lump will have us on our toes.

My hair is growing back but its a totally different texture so I don't know how to style it but I am just happy I have any hair at all! Once you go bald I guess we are just happy with any hair on our heads heehee I have neuropathy in my finger and joint pains most days. Overall I am thankful and so appreciate having you all here.

xoxo

zinny

Hi Y'all. So nice to "see"you. Lovely words, Cathytoo.

I was just thinking to myself this morning how weird it is to be on the other side of treatment. People ask all of the time if I am now "cancer free" an that is not a very welcome question. I try not to think about it. Having to articulate that "you don't know until it doesn't come back" leaves me more uncertain/uncomfortable that I would like. But better than the alternative.

It is funny, going through treatment, I felt like I was in warrior mode, getting out "marching" through my daily walks, laying down my 30 minutes of meditation most days, ready to battle this cancer thing. Now that the treatment phase is over, I am finding myself so differently motivated, and I feel guilty that I have let the meditation slide, that I am not walking as much, that I am eating too many treats….I am trying so hard to live my life free of the" shoulds" and just do what is good and healthy and makes me joyful...

I was talking to my mom about it, and I was saying that it is like I am in a restorative phase. The only trouble is, I don't really know how to do that!! I know warrior. I am not back at work yet, partly because my brain is not good enough, and I would like to be back to a closer version of myself before I need to make important decisions etc. Maybe I have too much free time, lol. Anyhow, I know that if I am feeling this, others are likely having some of their own struggles with their new "stance."

FLBuckeye93, I had a BMX with immediate DIEP reconstruction. I had invasive ca on one side and DCIS on the other, with a mom with premenopausal breast ca, and disease not seen on mammogram, and so though my genetics don't put me as high risk, I chose to get rid of the breast tissue definitively. I had my BMX May 31. I was in hospital for a total of 4 days including the surgery day.

I chose DIEP as I was really worried about capsular contraction with implant surgery. For me, I think this was a really good choice, as about 4 months post radiation, my irradiated pec got super tight and contracted, and post op, that "breast" has acted differently. ( I did radiation and chemo in reverse order, hence longer time between rads and surgery.)

That being said, the recovery from DIEP is no small matter. I was pretty fit and strong going in. I did well mobilizing post op, and was doing a slow lap around the nursing unit prior to discharge. I slept on a wedge for 4 weeks, and was not allowed to lift my arms above shoulder height for 6 weeks. I wasn't allowed to drive for about 5 weeks. I was worried about self care etc - but I never needed help in the bathroom, which was nice for the dignity. I was able to get out of bed on my own as well, though it wasn't lovely!

My pain control was good and I was off all narcotics within a day of getting home, took a little Toradol for a few more days and then Tylenol for a few more and then nothing ( by about a week.)

There were 4 drains in when I came home. Two came out after a week or so, and then it was another 10 days or so for the other two. Life was much much better after drains out.

After about 2 weeks after getting home from hospital, I was making meals and stuff, slowly, but resting a lot. There was a "white dinner" 3 weeks out that we usually love going to, and there was no way that I could have managed it, even if highly motivated.

It was a few weeks before I was even walking comfortably. First you are bent over because your abdomen is so tight, and then it is just harder to get to upright. I think I took my first trip to the corner store at about 3 weeks. The slowness of getting to walk down the street and do normal things was a real challenge.

It was about 4 weeks or so before I wore pants with buttons and only for special occasions:)

I have been working hard with a trainer twice a week and doing pilates with a teacher on the reformer for 6 weeks now, and I am slowly getting my core back. It is a bit shocking to me, since they only take a little bit of your ab muscle on each side, and I really didn't appreciate how slow that healing would be. I had a cold a week ago, and the coughing was terrible and I felt like I was going to blow out a hernia. I still have to roll on my side to get out of bed, but less so now. However, I have regained almost full range of motion in my arms, and am lifting weights and building my arms and chest and have no discomfort there!

And my foobs are flat and funny looking but my tweaking surgery will hopefully make them look more like I would like.

Hope that is helpful in getting a sense of what the recovery is like…. and thanks for the song, have the hook in my head

Maya15

zinny, thanks for the recovery timeline! I am 10 days out from the DIEP surgery myself. I can get up from sitting but can't yet stand up straight or get out of bed. I'm very much still in the "warrior" phase. It looks like I have 2 more surgeries on the horizon when I recover from this one, and 5 more months of Herceptin and Perjeta infusions. I will have the DIEP revision surgery and then it looks like I have earned myself a surgery just for the side effects of chemo. Taxol burned my insides and left me with a fissure that won't heal, and I've exhausted all other options.

My main lingering effects from chemo are fatigue and joint pain. Before this recent surgery I could walk long distances but I couldn't climb more than one flight of stairs (apparently Perjeta is to blame. My MO says the joint pain is from chemopause.

FLBuckeye93

Thank you so much for your replies! Having information helps to wayleigh the emotions. I'm going to meet with MO to get his opinion along with two plastic surgeons.

It is weird to be on the other side. It's a cautious sense of freedom.

I hope you all have a good weekend. Xoxo

LifeAloft

What the heck! I've lost both big toe nails in the past 2 days! My thumb nails are finally growing in and now this, 4 months post chemo. Well, at least sandal weather is pretty much over here.

Again, the gift that keeps giving...ugh

LoveMyVizsla

LifeAloft, my fingernails that lifted have mostly grown out. I looked at them this morning though and they were darker colored at the tips. I had one toenail left, so it wouldn't surprise me if that one fell off, it hasn't grown out like my fingernails did.

Cathytoo

ACHES AND PAINS!...my last infusion was May 18th. I had no side effects but now I have shoulder pain that has progressed to waking up feeling stiff and in pain all over. I was fearful of a recurrence but saw a physical therapist who discounted this because the pain does lessen and/or disappear. He said pain from bone mets stays the same. But, my question is...have any of you experienced aches MONTHS AFTER chemo?

Wendiwithani

Cathy, I was having a lot of aches and pains, too. So much so that my MO ordered a bone scan last month (clear). The bone scan did show arthritis in my ankles, knees, hips, spine and shoulders. I recently started exercising everyday and it's made a huge difference in my aches and pains. As in...they are virtually gone. Perhaps yours is arthritis related, as well?

Cathytoo

Wendiwithani....did your pains come after chemo. This is so strange to me because I went through my entire treatment with no pain at all. In fact I felt better than I had in years. And now, out of the blue I am achy. I just don't want to do a bone scan (scares me to death!). I'm hoping that PT and exercise in a hot therapy pool will help.

LoveMyVizsla

Hi Cathy, I try to subscribe to the following plan: has it hurt for more than two weeks? If it has, get checked, if only for your peace of mind. If it hasn't been two weeks or it went away, then I don't worry about it.

DFWFLYGIRL

Cathytoo.....I am ER+ so the hormones post chemo and radiation deplete your estrogen and causes bad aches and pains. However I had them in August and September as well prior to starting hormones and MO said normal. Walking, exercise..stretching and PT all recommended and helping. I am also doubling up on tumeric. Hope you get relief.....

The gift that keeps on giving...cancer after effects

LovesToFly

some of my toenails are still bumpy and lifted, I hope I don't lose anymore.

I do have a lot of aches and pains, particularly in the morning, but I believe it is because of the tamoxifen and Zoladex and not chemo. Once I start moving around it usually gets much better, so I'm not too worried that it is metastases… Although of course occasionally that worrydoes creep in but I was also told that if it was it wouldn't come and go, it would be constant and eventually get worse .

Valstim52

Just to chime in, lots of aches, especially in the morning. As I go along during the day they get better. Seems they didn't start till after surgery and chemo. Rads made them worse, but nothing that lasts or is persistant longer than a week or so, or it goes away

DFWFLYGIRL

Valstim...how are you feeling? You had a double whammy with BCD and a stroke.. Hope all is well!! Jill.....your hair is coming in great!

Frill

FIrst I want to answer FLBuckeye's question: I am currently being treated at MD Anderson. Now, I do complain here and there about frustrations with administrative baloney, but I believe that I am at the best place (for me). I'm not sure about BDMommy's experience with MDA, but mine was completely different. I contacted them online, they called within a few days, and I was seeing my surgeon 2 weeks after I emailed them.

It is busy, but frankly, I've never complained that I had to wait an inordinately long time to see a doctor. The only time I lost my mind about having to wait was when I was scheduled to have chemo in the "main" building rather than the breast cancer building and I had to wait hours. While you're waiting, you can go to the hospitality center and hang out with people, or they have a quiet room with recliners and couches, warm blankets and pillows. I usually go there if I have a long break between appointments and work.

As for me, well, it's business as usual. I spent Thursday in the ER. I have cellulitis in my arm and my foot.

I finished chemo Aug. 4 and then Aug. 17 I was in the hospital with neutropenia, sepsis, and cellulitis

I started rads Oct 13. It's the most anxiety producing experience of all of this. I'm completely on edge 24-7. I refused to let them tape over the marker marks and literally almost screamed when someone suggested tattoos as an alternate. I've had 7 of 30 treatments.

On a positive note, I saw a doctor about the lymphovenus bypass procedure and he said I was a perfect candidate. Then I can have a lymph node transfer when I have reconstruction. That's if effing insurance will pay for it. Please, please, please.........

My fingernails didn't fall off, they just broke up super close to the quick. They're a normal lenghth now, but the cancer affected part is still there. I lost one whole toenail, boy that was weird. I wouldn't be surprised if I lost the other one, but I'm just trying to keep it cut, tea tree oil, and hope for the best.

Oh, one thing one of my PTs mentioned is that I (we) should make sure we're lotioning our feet very well every day. That peeling, scaliness on the feet from chemo needs to be lubed up, lol.

My only issues with aches and pains is my back but I imagine that's because my backpack is way too heavy.

Not doing the hormone business after. I've tried to talk myself into it. I managed to talk myself into and get my butt to rads, but I just can't do hormones. My instincts just say no.

Hair, eyebrows, lashes coming in, although of course not as fast as I want! I've been rubbing peppermint oil on my head, it's supposed to make it grow back faster. Idk if it does, but it feels good.