Chemo starting December 2018
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kber, glad insurance approved of neurogen. I’m certain if I had a boost for wbc, my immune system would get that extra help to get me out of this cold/flu. But, the onco nurse stated that my blood counts, be it in the low range, is still at acceptable range; therefore not getting any kind of immune boost shots.
Anxious, congratulations on finishing chemotherapy, and a well deserved vacation is in order! Everything you’ve described is everything I’m going through. Terrible stomach cramps, followed by diarrhea (sorry, tmi), low grade fever of 99.1-100.4 degrees with night chills. And constant feeling of having the flu. Body aches, muscle pain, weak legs and a hardy chest cough. Taxol is definitely a test of physical and mental strength.
Nanette, sending you lots of positive vibes for upcoming mastectomy.
I really miss my sauna sessions. MCBaker, I know you mentioned about not sweating out the necessary chemo. Generally I go at the very end of treatment cycle a day or two before next treatment. I’m sure by then, it’s already circulated throughout the body and getting rid of the remaining toxins really felt healthy. The concern with PiCC line is that the moisture/sweat could cause infection. If I could figure a way to keep the PICC line dry, then it would be okay. Currently, showering is a challenge. But, I usually dry everything off immediately. Taking a nice hot bath also sounds great, but have been told that’s also off limits.
I understand undergoing chemo isn’t supposed to be fun. But if the little joys in life are also taken away, how are we to keep plugging on? I guess, knowing that I will keep fighting through no matter how challenging or difficult it is, will give me a sense of accomplishment that only those of us who’ve gone through this will ever truly understand. And that in itself is empowering.
Lots of love to all my BC sisters.
xx
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Angie, glad you had already thought that through. I was worried.
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Angie, McBaker, I am barely researching about detox after chemo, is there really a difference between infrared and steam sauna? How long should I stay in sauna and how often should I do it in a month? What do you think about Chiro, too?
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The infrared sauna people said infrared is better.
I think as long as you can stand it. I intend on only doing it once.Chiro is fine, and they know some things about BC.
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Anxious, infrared sauna is supposed to be more effective for detox sweating. It seems to work deeper than on the surface of the skin. For me personally, I enjoy all of the different sauna methods. Steam is great for skin. Finnish or dry sauna heats up the air to a very warm temperature, therefore; sometimes it may feel a bit too much. Since infrared is more direct, the temperature to begin sweating is at a lower setting and is more effective and easier to handle if you’re not accustomed to saunas.
At my gym, we have dry and steam saunas and for the dry sauna, I usually would only sit for about 5-6 mins at a time with quick cold shower to cool down and then repeat 2 more times. Onco nurse advised limiting each sit to 5 or so mins.
During AC treatments (2 weeks cycle), I usually sauna on day 12 of treatment. And now that I’ve been on Taxol, I’ve only gone once after the very 1st treatment. Have been so sick that I haven’t had energy to gym in past 3 weeks.
I do believe sauna helps me to feel healthier and better. I’ve heard that some people, will go every day. Though, that seems extreme. I think going 2 or 3 times a week is a great way to detox especially after chemotherapy.
I’ve read that keeping the body at a warm temperature helps to fight off cancer. Not sure how much of that is backed up with science. But if it doesn’t hurt me to sauna, and because I do feel so rejuvenated afterwards, I find it worthwhile
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Hey all, I checked out for a few days and sounds like some of you are having a rougher than usual time of it. So sorry to hear that! Angie, I agree about missing the little things being harder to tolerate some days than the big ones like hair loss. Kber, it's like adding insult to injury when you have to fight the insurance company! Anxious, I hope you enjoy a well deserved vacation!
I'm here to give you the light at the end of the tunnel bit. I'm half done with my radiation - two more weeks. Then I will just be taking an estrogen blocker pill daily. No more treatments!
Bad news: I'm 6 weeks post chemo and still feeling some side effects. While fingers and toes don't hurt, they still feel funky and my nails look kind of yucky. I'm still tired and weak. Not as tired and weak, but surprisingly still feeling it. I've been walking daily, up to close to 4 miles a day - but my legs feel like jello all day after my walks and they're sore! Like if you haven't been skiing for a year and spend a day on the slopes kind of sore all the time. I probably need to ask someone about it. . .
Good news; Although tire and weak, I don't feel "bad." I didn't realize how constantly just bad I was feeling until it was gone. I'm happier, peppier in mood (don't have the energy to back it up for long) and generally feel like me until I try to do something that takes stamina. My eyes don't water at all, at least no more than normal. That is a huge relief. And I'm starting to see little bit of hair growth on my head. No eyelash growth and my eyebrows are pretty sparse, but some hope on my head. All taste is normal now too.
So you all can do this. You will reach the end of your treatments then start to feel better. It's a lot slower than I hoped, wanted or anticipated, but slow improvement is better than feeling like crap all the time.
Last observation. I've been measuring time/life in cancer increments - how many weeks to surgery, how many weeks to chemo, how many weeks between chemo, how many weeks of radiation. This is how I've planned for what feels like almost a year now (closer to 9 months but feels like a lifetime). In two weeks, I'll have to find a new metric to measure life as I'll be done with the cancer metric. I'm looking forward to that very much. You all will get there too. Hang in there, cry, laugh, break a few plates, whatever it takes. There is a light at the end of the tunnel.
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HI Becky - thanks for the words of encouragement. Your observation about measuring time in cancer increments hit home, and you're absolutely right - that's how I've lived my life for months now. I'm not even sure what "normal" planning looks like, but you know what, I'll cross that bridge when I get there! For now it's still head down, face against the wind, one foot in front of the other. (Add in whatever cliché works here.)
My insurance woes got worked out. I've worked with an "advocate" since I was diagnosed and honestly I didn't think to call her right away. My bad, because once I remembered I had that resource available to me, she got it straightened out within 5 minutes of getting her on the phone. (Plus she was completely aggravated on my behalf, which made me feel vindicated. Seriously, listening to her dress down insurance bureaucrats is actually a pleasure.)
I've just come to accept that the next 5 weeks is just going to be a slog. Everything I've heard, read, and researched tells me that the side effects, exhaustion, and general yuckiness gets progressively worse and that's just how it is. Maybe if I expect the worst, I'll be less likely to be disappointed and maybe even pleasantly surprised on occasion.
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kber, glad the insurance woes were resolved and quickly it sounds.
Slog sounds like the word for it all. My sympathy. I hope the weather turning nice can mitigate some of the feeling of yuckiness. Wish I had something better than that for you, but, looking out the window at sunshine right now and thinking "Ok, recovering my health is like spring. It takes a while and here in Michigan, spring is really a season of muck - rain and mud. But then, finally, it's beautiful." You'll get through and then you will be enjoying the summer!
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Hi kber and Becky.
I too feel like I will just slog through these next 6 weeks of chemotherapy. Meeting with MO this Friday after bloodwork (3 week cycle). Will ask her for referral to pulmonary specialist regarding cough/ lung issues. I believe I may be experiencing Pneumonitis. All symptoms point in that direction.
I do recall when meeting with RO regarding radiotherapy, she mentioned that in some cases (15-20%), one of SE is delayed Acute or radiation Pneumonitis (inflammation of the lungs). Which could occur 1-6 months after radiotherapy. Flu like symptoms of low grade fever, body and muscle aches, headaches, and general malaise with chest cough.
I've also done some research recently, and read that about 15% of patients who have received radiation treatments are prone to acute/ radiation Pneumonitis and especially those who've received a taxane (Taxol or taxotere) are at high risk.
Hopefully seeing a lung specialist will help alleviate the flu like symptoms and cough. Have already been feeling so sick for 5 weeks. And I'm certain, it will also take some time to recover from this.
Becky, you've put it so well about seeing life in cancer increments of time. How many weeks or months this journey has been and still is. Last Thursday was 6 months exact post surgery. So, Friday. I took a selfie of what they looked like. (To spare everyone, won't post it.)
Kber, I too am still kinda in somewhat of denial. I go about with the routine of hospital visits, but never giving any thoughts to the consequences towards the future. So, I'm not sure how I'll be feeling once active treatment ends and then I'm left with time to really soak up the whole experience. But for now, I can only focus on taking it one step at a time. Love your quote,“face against the wind, one foot in front of the other."
Be well, my sisters.
xx
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Angie - keep us posted. Experiences like yours are why I’m not on the “avoid Dr Google” bandwagon. You’ve clearly done your research and are bringing your concerns to your doctor in an informed way. You’re taking charge and demanding answers and care, which would be harder without the internet, for sure.
I hope you get some relief soon!
Be well everyone. Take care of yourselves.
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Angie,
I hope this gets resolved more quickly for you now. Sounds as though you've taken control of as much as you can, so good for you!
I found a thread here on radiation starting in March of 2019 which I've also found to be helpful if anyone else is there yet.
Radiation is a cakewalk compared to chemo. But the fatigue is different. With chemo, it cycled and I knew it would go away a bit after a few days. This is a gentle downward slide towards, I'm not sure what it's towards - maybe becoming a bowl of jello on my couch? Everyday I feel a bit more tired, less strong, less stamina. It's frustrating because I had just started to feel "right" again. Bright side - only 7 more treatments to go counting today. By next Friday I'll be "ringing the bell." (I don't think my dr office has a bell, but if not, I'll be ringing it in my head.)
I posted part of this on the other thread, but wanted to share it here too. So I feel as though I'm getting off fairly easy. It's all relative isn't it? I feel like I got off easy because I didn't have a mastectomy, just a lumpectomy. I got off easy because my chemo was ONLY a 4 course over three months. And now I'm getting off easy because I only have to have 20 sessions of radiation. Compared to many of my warrior cancer sisters, I have a cake walk. But to those who haven't traveled this road, I'm a badass, lol. Anyone else having these type of thoughts? Perspective is an interesting thing.
Wishing you all joy, strenght and ultimately, good health. Stay strong warrior sisters!
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Hi Becky - I've heard variations of guilt from a few folks and it sounds like a flavor of survivor's guilt to me, common but unwarranted. Thinking about my worst day ever in this wild ride - it was the day my doctor told me he suspected I had cancer and needed to do a biopsy. It was worse than getting the actual results a week later, worse than chemo, worse than anything.
No matter the treatment plan we are "lucky" enough to have, everyone starts with diagnosis day, and whether you "escape" chemo, or a mastectomy, you don't escape that one day, that one conversation. As horrible as this sounds, however, it unites us. We understand each other in a way few will be able to at a gut level.
Thanks for pointing out the Radiation thread - so very helpful to get a preview of what comes next! I have 5 chemo sessions left, including tomorrow, and I'm just now starting to think about "what now". For the immediate future, I've started researching flights to California - I am feeling more confident that I'll be able to finish up chemo, give myself a 3 week rest, and go and enjoy my son's graduation. Not hitting the "buy" button yet on the tickets, but will in a few weeks!
I absolutely need to start walking to rebuild my stamina, but honestly I'm so tired it seems like a daunting task. Basically, I work and I sleep. But I've promised myself I'll start after chemo is done. The weather is just starting to turn nice here in NJ and I'll take advantage of it.
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I had my first Herceptin today. It was so easy. My eyes and nose are drippy. I entertained myself watching the birds on the lake and reading. So much better than being knocked out with that IV benadryl. I am never going to take benadryl for the rest of my life.
This was at the local hospital, and so much better than in the city. I told the cab company last night that I needed a ride to an appointment at 9:00. They delivered me at 8:30.
My blood pressure was 150, anxiety at something new, I think. If it wasn't back to normal by the time I got home, I just took my bp pill, so should be OK either way.
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My mom went to chemo with me for the first time last week. About my mom, she's got my back 100%. If I ever needed a kidney, ransom or bail money, or wanted someone whacked, I'd call her first. She's been there and more since I was diagnosed (actually, since always). However, I think she was picturing a worst case scenario and was afraid to see me in distress, like a chemo session was akin to a dark ages torture session. I told her if she saw the reality, it could not be nearly as bad as whatever her imagination was conjuring up. So she finally went with me and discovered that no one is putting bamboo under my fingernails, that the room is comfortable, airy and light, that the nurses are warm and friendly, and the worst parts are 1) getting a finger stick and 2) it's a bit boring.
I think she was somewhat relieved.
She's said a hundred times that if she could somehow do this for me, she would. As a grown ass woman closer to 50 than 40, I think that's silly. As a mother of a 13 year old girl, I totally get it.
Love you too, Mom!
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Wish I had mine to carry me through this. 0 -
Hi MCBaker - I hear you. We need our friends and family now, as many of them as we can fit.
Glad to hear your Herceptin was easy, at least relatively. What lake are you near? As a kid, I spent the summers on Lake Michigan - on the Michigan side tho.
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It is just a community lake. I live on the Mississippi side of Wisconsin.
My brother called yesterday. I can be honest with him.
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Personally I don't think there's such a thing as "just" a lake. I'm a fan of them in all shapes and sizes. I suppose, as a transplanted Jersey Girl I should have transferred my aligience from fresh water lakes to the ocean, but I haven't.
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I had trouble transferring allegiance from the Mississippi to the Missouri, LOL. I am comfortable with 40 miles from the Mississippi, but not much more.
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Hi everyone!
Thank you for that pneumonitis information Angie. Now if it happens to me, I won't panic.
I wish I had my mom too.
Last chemo was Feb 3rd. Hair is finally starting to grow back. Whew!
Hang in there ladies. My feet are tingly still, but otherwise, I feel back to normal. Radiation is much easier than chemo...although my skin is pretty fried! Almost done with that though.
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Thanks kber, I think perhaps you're right. You made me cry though, so now I'm "mad" at you. I hate, so very much, getting emotional.
I miss my mom too now. But I have such a strong support group, I feel very blessed.
My boob is red now and starting to feel a little painful. Only 6 more treatments to go though! Fatigue was actually a bit better today - no clue why. The only thing I did different was I didn't walk until the afternoon because it was raining this morning.
Lillian, my hair has just started to grow again too. My last chemo was Feb. 8 so I'm just a few days behind you. I have a bit of fuzz!!!! My toes still tingle too, and my fingernails look awful. Apparently some of the nails are partly separated from the nail beds. The nurses say I just need to let them grow but it kind of freaks me out. Anyone else having the same thing with fingernails?
Lakes? I live minutes from Lake Huron, but grew up (mostly) in Missouri. I had no problem switching allegiance to Lake Huron from Lake of the Ozarks - no comparison. Ozarks, while nice, is brown and full of venomous snakes (my grandparents had a place on the lake). Lake Huron (where I live is called the Blue Water Area) is as blue and clear as the Caribbean on a summer day. It's gorgeous. And no venomous snakes!
Here in MIchigan, we like to say "Four out of Five Great Lakes prefer Michigan!" :-)
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My fingernails are becoming desperate. The pain has subsided, replaced by bruising under the nail and they are lifting in a few places. Not much to do except keep them short and wait it out, I guess.
Toenails ok so far.
I’m starting to get a little fuzz on my head. It looks less like hair and more like goose down. Perhaps I’m becoming part bird! Funny thing is that even with such thin, fine growth, my head is noticeably warmer. I can sleep without a cap now.
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Glad your hair is coming back kber and Becky! I'm a goose too! Only my hair appears a lot darker than I remember it being before chemo. Maybe as it comes in more, I'll see my old friend medium brown with red highlights. I'm not picky though - just glad it's returning. And it's itchy to have a hat on now, so I'm much relieved when I get home and can go a la natural!
I see "ridges" of dark on my nails and they are super thin. Not one's separating from their nail bed though ~ ouch!!
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My hair is about a 1/4 inch long. It looks like I will be losing three toenails, but no problems with fingernails.
I saw Lake Michigan from a distance several years ago, and saw it up close in a visit to Chicago as a child. Saw the ocean in San Francisco. Other than that, the biggest body of water I have seen is the Mississippi, but you can't get the idea of the immensity of it with just your eyeballs.
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Its amazing....everyday of this journey is different from the previous day!
So, my last chemo was Feb 5th, and today was 13/33 of radiation. My hair...or I should say salt and pepper fuzz..is starting to grow. The top started two weeks ago and now the back and sides of my head are just beginning to come in. My scalp still gets itchy, and I think its in the areas where the hair is trying to come in. Last week I had my pre-chemo energy back, and this week I am a little more tired and less energic. So far my skin from the rad is doing okay, but my nipple is very sensitive! The tips of my fingers still tingle, and I was fortunate that my nails are okay (I do use OPI nail envy on it every other day-a recommendation from a nurse).
Just this week, two people called me saying they know someone who was just diagnosed with BC and they want to know if its okay to reach out to me to talk about my experience. It felt so good to share with these people and hopefully give them at least one piece of info that could help them! It was just six months ago that I was contacting people to hear their experiences-what a crazy half of a year we have been through!!!
I miss my mom too...but she is watching over me!
Wouldn't it be nice if we could all meet for a cup of coffee!!!!
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We could mother each other!
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It's so good to "see" everybody again.
MCBaker, you are winning the hair contest I think. A whole quarter inch!
Flower! Radiation can make you tired. I bet that's what it is. As far as support, I bet you'll be great at that for others. I now know why BC survivors were so kind to me in providing their experience. Once you've been through this experience, you know how hard it was when we first started learning about all this.
I went for a short hike a few months ago - in my chemo hat so it was obvious I was going through cancer treatment. Plus I was huffing and puffing up the hill because well...you know chemo. A total stranger came up to me to say that as she was following me up the hill, she had this really strong feeling I was going to be ok. She said a few words about how it may seem that I was weak now, but in the days ahead, I would be strong. And she said the feeling was so strong, she felt like someone was in her ear and wanted her to tell me that. Seemed like a nice, normal person without an agenda. My sister expressed almost the same words...that when she thought of me, she just got this sense I was going to be ok. Not even worried. Anyway....I really think that was my mom, who passed away 10 years ago from cancer. Don't know how legit all that is, but I'll take it!
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Coffee sounds great! And I do believe we are all mothering each other, lol.
My hair growth is different from yours, Flower. I never lost it all on my crown, always had sharp stubble, hence the velcro head. The sides and temples were quite smooth from hair loss though. Now, the sides and temples have noticeable fuzz but the crown doesn't look like that hair stubble is growing. I have no idea about the back, haven't really checked. I thought I could detect a hint of stubble on my legs, but not enough to even think about shaving yet.
I like how you described your nails as "desperate." That pretty much sums it up. I don't think I'm going to lose any, but 5/10 nails look dead starting halfway to the tips. I've always had good nails - don't do manicures or much polish, but they are strong, grow nice, good shape, cuticles,etc. So this, along with all the other fun residual SEs kind of blows. But it, too, shall pass.
Lakes, rivers, mountains, forests, plains - it's all beautiful. It's nice to just have a place to rest your eyes sometimes.
Have a great day all.
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Hello beautiful warriors! I finished my 6th and final TC chemo today! Overall, I handled the treatments really well and I'm sorry I haven't posted more often....been more of a lurker and have SO enjoyed reading all your posts and keeping up with all of you!!! Sending tons of hugs and support to each of you!!! Have a wonderful and relaxing weekend, sisters!!!
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congrats! You are beaming!
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