Starting Chemo in October 2015

Jclc83 · January 2016

Even if you try to explain, most people have no idea of what you are going through homeschool.

igay1ord · January 2016

I know when I was first diagnosed my MO said I would be on Tamoxifen for 7-10 years...but that was before I ended up being triple positive, with a greater chance of recurrence, and am now doing chemo/radiation. I have an appointment this afternoon, and I believe I'll ask him if that's still going to stand.

Posting a pic of all my new "hair" growth in the last 4 weeks, but now my eyebrows are starting to thin out...go figure!

MDW1967 · January 2016

homeschool4us:

I really hope there is a chance for you to have another baby, despite all of this mess. I didn't realize you'd lost a child in October, and dealing with that loss while also dealing with a cancer diagnosis seems almost unbearable. It's inspiring that you're putting one foot in front of the other and getting through it all.

I have noticed that folks' sympathies have started to wear off a bit. Coincidentally, I just argued with my husband about this yesterday. He admitted that he's become a bit complacent about it all at this point. It's such a long haul, and over time, it started to fall off his radar to ask if I needed anything, or to step up more with things that need to get done. Other than a couple of friends, the dropping off of meals has mostly dried up, too. I still get occasional cards and emails, and offers to help if we need it. But I think there's a kind of natural drop-off that's probably to be expected as one's illness becomes a bit routine for everyone and falls into their background. In some ways it's hard, but I also found the inundation of help and offers of help to be overwhelming at times.

I also think you're onto something in terms of how people see you. I don't wear wigs, but the beanie-type things I usually wear can kind of mask that I'm bald--especially at this time of year. And I wear a little makeup when I go out or anyone stops by. So it's pretty common for people who see me to remark that I look good, healthier than expected, etc. It's a bit deceptive--what you're actually going through is not apparent.

MDW1967 · January 2016

igay1ord: congrats on the new hair growth! That looks like a lot for 4 weeks!

MaineRottweilers · January 2016

I am starting weekly Taxol tomorrow. I am coming off two doses of Taxotere which took me so low that i have been unable to work. I took a short break over Christmas to recover from pneumonia and rebound from the effects of Taxotere. I had great response to the Taxotere, even on two doses but QoL was just not there. I am feeling quite a lot better and ready to pick up the fight. I'm nervous that I won't tolerate Taxol any better than the Taxotere (which I did fine with at initial Dx), especially since it seems to be working so well. Reading back through to see what I can expect for SEs but if you have a quick run down, that would be great. Are all Taxanes the same, efficacy and SEs? Hoping that this will do the trick, not so happy about the weekly investment of time in the chair though.... Hard to believe I started chemo in October with you and many of you are close to finishing and I have only managed to take two treatments (and a solo Herceptin/Perjeta before Christmas). I am so excited for you to be done and moving forward but I hope you will check in on this thread periodically. I feel like I know many of you.

BellaV · January 2016

Rats! Chemo was delayed a week because of my cold. I am so ready for this to be over!

As far as people understanding my situation -- I agree that most do not. We can smile and put on a happy face and everyone thinks we must be "doing so well". Even though we are achey, fatigued, mouth is burning, fingers are numb and skin is peeling, etc, etc. On days that I work I go home and collapse.

At work the other day I had a customer try to "cheer me up" by saying "It can't be that bad, come one, you'd look so much better if you smiled". Ooooh I wanted to punch him. haha

Kimmer33 · January 2016

Hi Ladies!

Homeschool, I have always found, since my diagnosis, that aside from the amazing support from my close family, extended family and friends just haven't been there - I just feel they don't know what to say. A lot of my family tend to ask my mom how I'm doing, even though we all live in the same city, friends on Facebook, etc. I really don't understand it - however, I'm not sure if I would be any different. I hope and pray that this experience will change or improve how I react/respond to family/friends who may be diagnosed with this awful disease in the future, because I sure haven't felt the love.

MaineRottweilers, I have had 3 dose dense Taxol treatments, so I don't know if SEs are the same as with weekly Taxol, but my experience has been a walk in the park compared to my first 4 AC treatments. I've had a slight bit of bone pain which is alleviated with Advil but that is all. Hope you have smooth sailing with Taxol. Sorry to hear about pneumonia, I too had a bout with it just before Christmas, still recovering.

Kim

ncsue927 · January 2016

Homeschool....I have found the same response since I went back to work this week. Everyone is telling me how great I look. I wear a wig and put on some make up, too. I have lost a good bit of weight, which I needed to lose, but again, everyone says how great I look. It's hard for them to understand what I went through to lose the weight. I still get some offers to help and I have my small group of close friends that I know I can call if I need anything. But for the most part, it's like everyone just expects me to pick up where I left off and be my old self again. They don't understand that I am still going for chemo every week and getting poison pumped into my body!

MaineRottweilers.....I did 6 dose dense AC treatments and have done 2 of the weekly Taxol. The Taxol is nothing compared to the AC. I still have some lingering side effects from the AC; my hands and feet are dry and peeling, my mouth still tastes funky and my taste is still off, some aches and pains. But for the most part I feel soooooo much better than I did with AC. I don't know if all of this drug class are the same, but I hope you have better luck with the Taxol. Good luck! It may seem like you are far behind others, but take heart that there is a light at the end of the tunnel and you will feel better.

Jclc83 · January 2016

Maine from what I know Taxotere is suspended in propylene glycol which makes it stay in the body longer and makes it stronger ( because it lasts longer)than Taxol. (More side effects too) But it is also the same reason that Taxotere can only be given at three week intervals. So they are the same but different.

homeschool4us · January 2016

Igay1ord, sorry you have issues with your port as well. That's great that you only have to use it twice more! I have 9 more chemos and then every 3 weeks of herceptin until next December still. 😕

Kimmer, the frst 2 rounds of taxol I had extreme exhaustion and aches all over 3 days of each week. The big D started on week 2. This 3rd round I have only been tired, not exhausted and the aches were minimal. The big D is still around. No other se's that I can think of other than eyebrows and lashes falling out and hair starting to grow elsewhere. Check out the weekly taxol thread on here too!

homeschool4us · January 2016

Andra, how are you feeling today?

Bellav, so sorry.your chemo got postponed.

Igay1ord, my hair looks just like yours!

homeschool4us · January 2016

MDW, thank you. Yes, I was 7 weeks pregnant when I was diagnosed. We saw the baby so many times on ultrasound and he was doing so well. He made it through general anesthesia for my mastectomy just fine, but all along I was having bleeding issues related to a subchorionic hematoma that they thought would reslove. No one is sure, but it is thought that there was a big bleed that interfered with the baby's oxygen or nutrients and he passed away at 13 weeks. I delivered him and we got to hold him and take pictures and then I started chemo 2 days later. It was horrific.

MDW1967 · January 2016

BellaV, I'm really sorry about the delay in your chemo. Once you're getting closer to the finish line, it's hard to have something slow you down. But then if you did the chemo when you weren't fully over the cold, it might be a rougher-than-normal ride. Even so, I know it must be frustrating.

I can't believe the customer who told you: "It can't be that bad", and "You'd look so much better if you smiled." What an insensitive jerk! I applaud you for not punching him. I want to punch him on your behalf!

Homeschool, Kimmer, ncsue...

it sounds like there are a lot of folks here struggling with a lack of support, lack of empathy, lack of understanding from others. I feel very fortunate in some respects because I do have some die-hard friends who are still checking in with me, offering to bring food or help in some way, or just letting me know they care. And I'm also not in a position where I have to be physically present at work right now--which would be SO hard. But I've also clearly been picking up on how some of the people around me are kind of checked out and fatigued about my situation. The thing where they want you to be back to your normal self...and it sucks. I mean, I get that people don't *get* it. How can anyone imagine what it feels like, physically and psychologically, to have this horrific toxic crap pumped into your body, and then cycle through the parade of side effects--unless they've been there? And yet, it's still surprising that people can be as clueless and unsupportive as they sometimes are.

Andraxo · January 2016

My legs (really all my muscles) still feel so crappy. Stiff, sore, achy. Hard to get around. Day 5 no exercise except a little walking 2 of the days. Sucks.

MDW - I went from running 6-8 miles at the start of my Panama vacation to barely being able to walk the day I flew home. I had other symptoms too that are consistant with fluoroquinolone toxicity. I don't believe the Taxotere round 4 did that to me. Sure the Taxotere was taking my exercise down a bit every cycle (it does for most people), but that meant not working out twice per day like I used to before chemo, not running 10+ miles anymore, and not running faster than an 11 min/mile the last 2 cycles, not exercising more than 2 hours at one time on weekends. I still have exercised (run, hike, cycling etc) at least an hour/day every day since chemo started early October no matter what side effects I had (and 30 min on actual chemo days) - it always helped me feel better. I even snowboarded at 10k elevation during round 3 which was my worst cycle for feeling sick the entire time, and I still work in between chemo or from home doing admin on chemo weeks. I had been fortunate to not have a lot of fatigue with chemo, but I've always been a very high energy person. My energy has certainly been much less with chemo (I crash every afternoon when I'm working, also having a lot of chemo brain issues now), but after that antibiotic my legs feel like I ran a marathon and just won't recover. It is day 9 of stiff painful muscles, difficult walking, hard to move in bed, and trouble getting up. My general energy is great, but I can't use it for what I want. I am very sad and scared about it, but trying so hard to stay optimistic that it will get better.

Agree with everyone about the lack of sympathy issue. People see me at work smiling and acting goofy or they see me exercising (up until now) and think I'm just fine - despite being bald. I'm not fine. This is so freaking hard. I feel sick and everything tastes bad. I'm scared. I don't let people know that though or I am dismissive about it except for people I am truly close to. I also have to say though that I have never felt so loved in my entire life!! I'm in the best relationship of my life and he is so supportive...especially now when I am struggling to love myself because all my muscles are screwed up and I can't live life the way I have been even with chemo. He reassures me that I will get better. Wish he didn't live 5 hours away, but I see him often now since my medical/cancer treatment is where he lives. This cancer has also brought me closer to my mom and siblings even though I have difficulty sharing my feelings with them when things aren't going well with treatment. Of course, they all live thousands of miles away so their support is from afar. My few close friends have been great too! Not sure how it will go at work tomorrow though. I'm pretty miserable right now and I can't mask it well.

I was a Colorado resident where marijuana is fully legal, but the plastic surgeon who recommended the marijuana back in September when I had surgery really thought I needed medical, not recreational. I changing my state residence to NM where I get chemo and then applied for a medical marijuana card issued by the NM Dept of Health with a lot of paperwork from my doctor (it took a couple of months to get). Marijuana has been so fine tuned for strains and what you want from it in terms of relieving specific symptoms. I just wanted something to help me sleep and not to feel buzzed/high/stoned (or get vertigo and the giggles and the munchies!)....which means more CBD, less THC. The person in the dispensary spent over an hour teaching me about it and reviewing my options because I was clueless. There are types that are better for day (Sativas) and night (Indicas) based on what type of buzz/feeling you get and symptom relief. He also said there is specific research for breast cancer and use of CBD but I haven't had a chance to look it up yet. So I bought a tincture that is 50/50 125mg THC/CBD oils and another high potency 400mg tincture that is pure CBD (which you don't even need a medical card to get...you can just buy it OTC). I have to experiment by trial and error how many drops of each will do what I want (help me sleep and maybe take the place of melatonin). Last night I did 3 drops of each and it hit me in 10 min and it was a wave of sleepiness like I get from melatonin. I didn't stay asleep for more than a couple of hours though - part because of the hot flashes and part because I'd start crying because of how my muscles felt every time I tried to move and thinking about it possibly permanently affecting my quality of life.

Thinking about having my uterus and ovaries removed next year. I'm higher risk for other cancers because I didn't have children. Since chemo put me in early menopause, and I was never planing on having children, I'm likely better off without them and to decrease the fear that I'll have cancer in one of those organs next.

I'd better get to bed. Back to work tomorrow. So thankful to have my dogs with me so I'm not totally alone here - they are super!

Good night my beautiful and amazing sisters!! Love and hugs and restful/peaceful sleep to you all!

Andra xo

Jclc83 · January 2016

At least we get it and we're here for each other.

I have to relate something that happened to me that I shared on another thread. Two days ago, I stopped at Sam's Club to pick up a few things. You know how they have little booths set up to taste things and sell different products. Well on the way to the register, this woman stops me and shoves this box towards my hands. (Mind you,I am about 6 days post chemo and not eager to touch just anything. I'm also bald as a baby's butt).

Well she starts her spiel and I notice she is trying to sell me A CURLING IRON! I said "Do I look like I need a curling iron?" Inside I was laughing but I told her how insensitive she was and she said "Have a nice day!" I swear some people are stupid. Still shaking my head lo

MDW1967 · January 2016

Homeschool,

The loss of your baby was devastating to read about. I am so very sorry. To endure that loss and have to grieve it while soldiering forward with these awful cancer treatments...that's more than anyone should have to ever go through. Big, big hugs.

--Meara

MDW1967 · January 2016

Andra,

I'm blown away by how active you've managed to remain throughout treatment. I've tried to keep some sort of exercise going, but if I go for a 1 mile walk, I feel like I've conquered Everest. It's no wonder you've been struggling so much since the antibiotics wiped you out--it sounds like ability to keep running, cycling, hiking, etc., has been a huge part of what's been getting you through this. I hope better days are coming for you soon.

I'm glad you have a loving, supportive partner, and your dogs to keep you company since he lives pretty far away. Do you have to commute 5 hours for all of your treatments? That's kind of mind-blowing. I live about an hour and a half from Stanford, where I'm getting my treatments, and I thought *that* was far.

Thanks for sharing what you've learned about the medical marijuana. When I was first diagnosed, but before I started treatment, I actually experimented a bit with the high CBD oil that my husband had. It was a Sativa strain, so I would spray a bit under my tongue in the morning and then eat a spoonful of almond butter to nullify the taste. It did seem to help me a lot with anxiety. Interestingly, too, by the time I went for my first consult with my MO and my oncological surgeon, I had been doing the CBD oil for a couple of weeks, and when they examined me, the enlarged axilla was difficult to find. I know that high CBD oil is being used to treat cancers, and there are some early indications of strong response. The struggle in this country is getting legitimate some studies done so that more focus can be put on it. I asked my MO if it would be all right to take the high CBD oil throughout my treatment, and he kind of balked at it. His main objection seemed to be that they just don't know enough about the interactions with the chemo drugs, and there's some suggestion that it might interfere with liver function. So to be safe, I stopped with the oil. But now, as I'm getting closer to the end of the chemo road, I'm thinking I might re-introduce it to see if it helps with any of the side effects.

Jclc83:

That curling iron story was nuts! It really makes you wonder what people are thinking sometimes!

igay1ord · January 2016

homeschool...I will be on Herceptin until October 2016. My MO is almost of the mind to give it to me by IV instead of through my port. He said that since Herceptin isn't toxic to veins, he almost likes that option better for me.

Found out yesterday that after all my chemo/radiation/Herceptin is finished, I'll be taking either Tamoxifen or Arimidex for at least 5 years. Will this never end?!

Andraxo · January 2016

Meara - I do travel 4.5-5 hours for all my treatments, but I get to stay there for a few days and work form 'home' there. In late November/early December I was back and forth every few days which started to take its toll. I work in a hospital in the middle of the the Navajo Indian Reservation in Arizona and we have to send all our patients hours away for chemo and radiation, so the closest I could have chosen was 2.5 hours away. I went with where I had support and where I could also take my dogs back and forth with me. I travel far for everything. Even a haircut (when I had hair!) is hours away. And you're spot on in that exercise was what was keeping me feeling relatively "normal" during chemo in terms of quality of life. I may not be able to do as much or as fast or as far, but just doing it in some manner gave me the mental boost I needed every day to tell me that "I got this!" - I can get through it all.

I agree there needs to be more research on use of CBD for breast cancer tx (and other cancers too). A recent study was a lab study but it showed that is killed cells. http://mct.aacrjournals.org/content/10/7/1161.full I'm not worried about the little bit I just starting trying to use for sleep interfering with chemo, but it sure would be nice to know if I could use more and exactly how much and have it be beneficial for killing more cancer cells or preventing reoccurrence.

A friend told me this past weekend she has another friend who opted out of chemo/radiation and is treating the cancer herself using diet, herbs, and CBD. I don't know what kind of cancer she has but I know I would never be comfortable with that for my Stage IIA IDC.

Does anyone know for sure how soon after chemo should radiation start? I meet with rad oncology Monday after chemo and will have an answer for sure. I think it's about a month. Not sure why I want to start planning it out since chemo has shown me that I can't depend on any schedules staying true. It's still hard to give us that kind of control!

Andra xo

igay1ord · January 2016

Andra...I met with my breast surgeon on Tuesday for my 6 month check-up after diagnosis. At that time, he suggested a radiation oncologist and even set up my appointment for me in 6 weeks (when my last TCH treatment is scheduled). It's my understanding that my radiation will start 1 month after my final chemo treatment, which should put me around the 10th-15th of March. And since my IDC was on my left side, I have to have an echocardiogram done on my heart to check and see if the Herceptin has done any damage before they will start my radiation. Radiating the whole breast will also catch my heart, which could possibly have ill side effects...oh yay.

Well, I kind of got the poop scared out of me Tuesday, too. My surgeon's assistant did a mammogram on my left side since it had been 6 months and proceeded to pull the shots up on an ex-ray machine. She told me that something didn't look right, but that they would have to send the shots out to a radiologist for reading. Then my surgeon actually came in and looked at them...he said that there was quite a bit of scarring and a little fluid still left from surgery, but he was so reassuring to me that everything looked fine. I could've killed his assistant!

Also, I talked with my MO yesterday about Carboplatin, and his stance is he wants more long-term results than just a 2-year study. He wants to see patients studied for at least 10 years before he'll suggest stopping Carboplatin. He went into a long spiel about it and it was WAY over my head so I kind of lost track of what he was trying to tell me! I do know his main concern was about the long-term effects and congestive heart failure.

KellyAnne13 · January 2016

Hey Andraxo,

Just a comment regarding muscle pain... I finished chemo last July and had ridiculous muscle pain. I, too, had been very active prior so it was pretty tough to stumble around like I was 90. With each Paclitaxel treatment I got slightly worse and the last 2 were just awful. Then I remembered I had worked with a physician at one time who highly recommended Magnesium to patients for muscle recovery, not to mention it calms anxiety and helps with sleep. I started taking 300mg Elemental Magnesium Glycinate (not the mg listed on the bottle label, but elemental listed in the ingredients) and wow... within 3 days my pain was gone. I still take it every day and am totally active again

Kelly

Andraxo · January 2016

Thanks igay1ord - glad to know the timeline is about a month as I thought. Yikes - now you have me wondering about cardiac stuff. Scary. My IDC was also left but I had a mastectomy for a <1cm tumor that was in the lateral breast. I'm not sure what will get radiated. I would think just my axilla and maybe just the lateral chest wall since I had positive lymph nodes, but I guess I find out on Monday. Fingers crossed my heart is not affected. Funny that I keep thinking chemo is the end, but I still have a long way to go. If I reconstruct that would may start in late summer or early fall and I'll likely have to put on some weight for fat grafting.

Thanks Kelly for the tip about magnesium. I may pick some when I drive back to chemo town on Sunday (no drug stores for over 100 miles) and I can ask on Monday if there is any concern with interaction with chemo. I have not had any muscle pain or stiffness until this antibiotic. So wish I knew the cause of the pain and what it did. Am I not clearing lactic acid and why did it build up? Did the drug break down actin and myosin? As a PT, I wish I knew what was going on at a cellular level and I've been brainstorming with other PTs about....it would help me treat it. None of the physicians I work with had any specific recommendations if it was caused by the drug, but I hate just waiting. Mentally I really need to go for a run soon. Thankful my quads are feeling better today - that's just one muscle group and maybe the others will follow. Hopeful I'll be able to snowboard again in February and/or March.

MDW1967 · January 2016

Hi all,

This is a general question that's been on my mind now that my final round of chemo is on the horizon at the end of this month.

I'm generally skeptical about herbal supplements and anything that promises cleansing or detox capabilities. That said, I'm so eager for my body to purge all of this chemo sludge as soon as possible that I'm wondering if there is anything that will actually help with that--aside from just time and patience. I've read that it takes months for the drugs to be fully out of my system, and that is just depressing.

Does anyone know if Milk Thistle can actually help as a liver detox agent, or is there anything else that helps? Milk Thistle is one thing I've read about that seemed to have some legitimacy, but it's hard to get good info.

Really fallen into the chemo hole today--which is par for the course. Three days in is where it usually gets tough. I just want this to be over.

DurhamGirl · January 2016

MDW1967, I was just talking to my acupuncturist about detoxing the other day. It was part of a larger conversation about anti-cancer dietary changes that I might want to make in the long term. My acupuncturist works with many cancer patients (mostly on a pro-bono basis with a local cancer support center), and I really think he knows this area well.

He recommended a homeopathic detox because he feels it's effective but not too harsh on the body. We didn't talk details, but he did recommend waiting until after chemo and radiation are both finished. Although he is knowledgeable in this area, he did recommend that I meet with someone specific in my area (Durham/Chapel Hill) who has a strong research background and specifically works with cancer patients on healing and recovery. Here is his website: http://selfhealingoptions.com/category/cancer/. I haven't looked at it at all, but he said that this guy will set up a very detailed detox and healing/recovery plan based on your specific situation, type of cancer, etc. I don't know if he works with people in different geographic areas, but the website itself might be helpful as a starting point.

Regarding dietary changes, my acupuncturist feels that the biggest cause of inflammatory response in the body is sugar. His recommendations for an anti-cancer diet would be 1) low/no sugar 2) low carb 3) high protein and 4) lots of vegetables. None of this is earth shattering news, but it does seem like sugar is considered the major offender these days.

Hope that's helpful...it all seems hard to do right now, especially when all I want to do is get back to something "normal." But I sure don't want to go through cancer again either...

homeschool4us · January 2016

Anyone have a dye study done on their port? I am not getting blood return on my port consistently so they want to do one in 2 weeks. I am wondering why they need to sedate me.

Kimmer33 · January 2016

hi ladies!

Just reading thru some posts from today and so much good info! I too would like more info on detoxing my body once i am finished chemo and will do some research online. I am also going to look into natural ways of combatting these hot flashes - possibly acupuncture.

Andra, my RO said I would start radiation one month after my last chemo - 2 weeks to recover from chemo, then my SIM, then they need 2 weeks to "map" my rads - mine is also on the left side and my RO said that heart and lung location definitely play a factor in risks of future damage. I will have a CT scan so they can see exactly where these organs are in relation to their mapping of the radiation rays in my body specifically.

Kim

Jedrik · January 2016

Hi Ladies,

trying to catch up here.

I, too, felt a bit unloved these days because everyone seems to get so used to this new reality they're not even cutting me any slack once the dexa gets out of my system an my mood crashes. It helps a bit to see this is a common problem, so thanks for bringing it up, homeschool4us. I am so sorry to read about the hard road you had to walk. My heart usually goes out to all the young women with young children dealing with cancer, but loosing one while dealing with a cancer diagnosis seems next to anbearable. If it was up to me you will have an easier path and more children in your future.

That stubble looks cute, igay1ord, so much nicer and even than the weird fuzz that is forever falling out and regrowing on my head. BTW: I had a bit of a panic attack when I found out that the surgery will most likely be followed by RT and definitely by month of herceptin since up to then I thought I could resume life as I knew it sometime in april. Those five years of further medication you face put that into perspective. I hope those won't have uncomfortable SEs for you.

Seeing your continuing struggle with those pesky antibiotic SEs makes me feel a bit guilty about my lack of motivation to work out some more, Andraxo. I was scheduled to finish the year with 10 000 miles on my bicycle and at least 500 miles run when I was diagnosed and I should get out more if I want to get back on the road as fast as possible. Also, I am getting depressed and cranky fast if I don't ride. But the oncologist was like: "You should work out as much as you can, but keep your heart rate below 120 bpm". That is incredible low and no fun at all. Acutally, I would never even get out of the basement carrying the laundry to the second flour if I adhered to that. Anyway, hope the rest of the legs is following the quads and you can get out today and feel better. In return I promise to take my favourite bike out and maybe feel better, too.

Jclc, thanks for the info on taxotere vs taxol and the story about the lady with the curling iron. If that woman could ignore you being bald I should not be suprised about my dear ones ignoring my inner turmoil while I keep up doing my chores without complaining.

MDW: Good luck dealing with the worst days of chemo. I hope you're not feeling too bad.

Yesterday I went to the breast center for a checkup. They had to search for both the IDC and the DCIS, found some narrow streaks and concluded that there's probably just scar tissue left and were generally pleased. We hat a bit of a talk about impending surgery and even set a date for it: Three weeks after last chemo which would be february 22nd. Although nothing much really happened it does feel like progress.

All others: Hang in there.

Andraxo · January 2016

Wow Jedrik! That's a lot of miles. You're an athletic rockstar! I'm sorry they capped your HR at 120bpm during chemo. That's so low. Thankful I wasn't given any restrictions, but doesn't matter at the moment anyway since my muscles still don't work right. Still feels like every muscle in my body was overworked in a big event and won't recover. So freakin' stiff and sore when I move. Even typing hurts. If I stay still I'm fine, but they it's harder to get moving again....like my muscles are being replaced with cement. Worried about what chemo will bring on Monday. Aside from that I'm feeling great! Plenty of energy, trying not to let my muscles bring me down mood wise (the big challenge). No other side effects at the moment. Worked 2 10hr days in a row at work, and 6 hours today. Of course, my love is out skiing in fresh powder while I am sidelined. Putting on weight quickly without my usual exercise, but could use a few pounds now. I just need to make sure I don't gain so much that they recalculate my chemo to a higher dose. I have a 12# window.

Thanks for the info about radiation Kim! My consult is on Monday and I had no idea how detailed they map things out. Fingers crossed your (and mine!) heart is far enough away from the path they determine.

I finally posted my 2015 photo summary on Facebook. It's my year in pictures since I usually don't post anything during the course of the year....I just sit back and read everyone else's stuff all year. The word is out that I have cancer...pretty obvious from my baldy pics and captions. I must say that 2015 was absolutely fantastic despite cancer! It ended really rough though with this muscle problem, but I left that out. If anyone wants to see it on FB - just friend me (Andra Battocchio - I'm the only person with that name on FB, but you have to spell both my first and last name correctly...a challenge! haha)

Hope you're all having a super weekend!

- Andra xo

Jclc83 · January 2016

Andraxo if anyone can overcome the problem with your muscles I know you can. You have determination, strength and the right attitude . Dont let it get you down . I can't take Statins because they cause me muscle pain and weakness. Some rare reaction called rhabdomyolosis ( not sure if that's the same as you)

AmyBeader · January 2016

I will friend you, Andra! And anyone else-I'm Amy Sims in Georgia

igay1ord I have new growth too, but I wonder what will happen to it since I have 2 more rounds to go. I lost my eyebrows several weeks back, but my eyelashes are still (mostly) hanging on, yay! I can't imagine why they would not use your port for Herceptin? Is your MO suggesting that you just have it removed after your TC rounds?

I briefly saw my RO the week I started chemo. We made my next appointment the week before my last chemo, so I am assuming I will start about 3-4 weeks after that. So March is probably Rads month.

DurhamGirl-I was pretty much off of sugar before BC, but it seems that the only things I can eat that actually taste decent have either sugar or salt. I had a BC survivor friend tell me to eat what I wanted to during treatment, so I do! I will try to get back to a healthy diet after round 6.

RE: Magnesium: My MO suggested 800mg of magnesium for my hot flashes. I got this brand from Amazon and have started out with 200mg in the morning and 200mg before bed. I have not had an gastro side effects so I'm pretty happy. Still having some hot flashed but not nearly as bad. And I've read that magnesium is also good for leg cramps and anxiety, so bonuses there.

I have to have echocardiograms every 3 months while on Herceptin, and I had my 2nd on Monday. it was normal-yay. Saw the MO Tuesday and got a B12 shot to try to help with the CIPN. I don't notice any difference though. I still have a weird numbness in the tips of my fingers, and now my toes. He will probably drop my Taxotere dose again on Tuesday, and if I am still having problems he may drop it altogether the 6th round. I saw my breast surgeon this week too, and she said that it wouldn't hurt her feelings any if he did, that it was the Herceptin that was the golden drug. I just really wish they could give that by itself!

RE: endocrine therapy: I am ER+ and pre-menopausal, so I have Tamoxifen in my future as well. Another thing that my breast surgeon agrees with me on is that it should be unnecessary to remove my ovaries, yay! I guess it depends on if my periods come back after chemo, but it's either Tamoxifen or AI.

BellaV-so sorry your chemo was postponed! I know you probably just want to get it over with asap, but it's good to let you body rest before you beat it up again. Hope you are feeling better.

I'm definitely with you all about the sympathy/attention. I do think people mean well, and some just don't know what to say. I am actually getting weary of people asking how I'm doing. Fore some reason I feel the need to be positive, and tell them about only the good things (like, only 2 more "bad" rounds to go, or my echo was good!). I just don't think they want to hear about my diarrhea/constipation, hemorrhoids, hot flashes, body aches, fatigue, nausea, CIPN, etc! I think even my husband has had enough, so I try not to complain. I had a calendar that a friend set up for me that I could post days that I needed things, mainly meals. It's nice, but a bit weird, so I don't think I'm going to put anything up for next week. I told my kids that they would each be responsible for dinner one night next week-they get to decide what to eat, and prepare it. My son wanted to know if he could order a pizza! I may just let him...

Starting Chemo in October 2015

Comments

Categories