Starting Chemotherapy March 2018
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Hi All,
It was great to find this board. So much support!
I received my 1st chemo treatment (TCx4) on March 9th and am making out well one week into it. This week has been a bit of a side effect a day but mostly manageable. I haven't experienced much nausea, but am discovering the new tastes of food. Everything tastes sweeter to me. I have been drinking a ton...more than I ever had. It's truly the unquenchable thirst.
Days 1-3 weren't bad. Days 3-5 were harder - achy and felt like I had the flu but managed to work from home for most of the day. Yesterday I experienced muscle spasms but thankfully they subsided. I am hoping that next week there will be fewer side effects.
Getting a little nervous about hair loss, but am well prepared with 2 cute wigs, hats , scarfs...
I really appreciate you all sharing your experiences. Stay strong!
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GBT1LADY-
I'm wishing you smooth sailing on the chemo. We are all in the same boat here and it sounds like you are doing pretty good so far......
I am scared to death. I won't find out my treatment plan until March 26th. Please let us know how you are doing......I'm sure you will look great with your hats and wigs....
Hugs
Joanie from Jersey
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Day 3 post chemo for me. The neulasta hit today - everything aches. As much as I didn't want to do it - got on the treadmill and walked 30 minutes. Did actually make me feel better. My sweet little chihuahua has been keeping me company. Worked half days Thursday and Friday. I am a healthcare provider myself, so hoping to stay healthy through all this. I think I could manage a full day the day after chemo, but today would not have been good. Just trying to figure out my new normal. It helps to hear of others going through the same thing and doing OK, makes me feel that I will get through this. Planning on laying low over the weekend. My 14 year old has a swim meet - hate that I don't get to see her swim, but think it is best to sit this one out.
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Hello Ladies
Day 16 after first TC infusion. Hair coming out in clumps. Had my daughter cut my long, curly, hair into a short bob. Will be buzzing it all off in the next day or so. In case anyone is wondering when it will happen.
Hugs and luck to all ♥️
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Hello everyone and Happy St. Patrick's Day!
I'm day 5 after my first TC infusion. First day my stomach was upset but no nausea...thank goodness. I have been drinking lots of water and walking daily. I do have a job that allows me to work from home. I have been able to work as my energy level has not dropped significantly.
The one side effect that I have is acid re-flux. Tums helps a bit, but I really need to change my diet to eliminate foods that are acidic. Thanks for all the good advice in previous post about this.
I have an appointment to try on wigs next Tuesday in preparation of hair loss...ugh. My daughter is going to go with me to make sure I do not select the wrong wig for my face. Ha! Glad her employer allowed her to telecommute to be with me for the next two months. She has been so helpful and the best walking partner.
All the best ladies!
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Hi March Ladies,
It is so comforting to read your posts. I had my first Taxol and Herceptin infusion on 3/15. Mostly I feel spacey, foggy, and tired thus far, and kind of out of my body. I will have weekly infusions: 1 down, 11 to go! Then Herceptin every 3 weeks for a year, along with radiation and hormone therapy.
It sounds like many of us are in the fear of baldness stage. I bought a wig, and am getting my hair cut in a few days. I think I will wear hats and scarves much of the time but makes me feel better to have a wig on hand
I hear many different port experiences here. I'm getting one on Friday and hoping all goes well.
As some of you have mentioned, it is so weird to have to get sick to cure a disease that we didn't know we had when we felt just fine.
One day at a time...
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Hi Ladies! Welcome to all new members of our growing community. Together we are stronger!!
For those on TC X 4 regimen, I am now 2 1/2 weeks post the first Round, and can say that for the past week I have felt really good - lots of energy, appetite and taste back to normal, and able to work (telework, actually from home, but at a full pace), use the treadmill, and get out and about regularly. Hang in there, those early into their first round of TC! Days 3-4 were the worst for me, and then gradually over the next week things improved. The big thing after day 5 was still weird taste, and tiredness, particularly at the end of the day. Listen to your body - rest when it says rest. And know that after about 10 days you'll start to feel like you again. I go back this Thursday for Round 2 and will be tracking everything in my journal again.
Practical tips or observations from the TC world:
Nails - Fingernails looking good so far - I have changed polish myself only 2 times, and am using OPI Nail Envy as a base coat with a dark polish on top. Keeping them quite short and trying to obey the rules of no using them as levers
, and staying out of hot water and using rubber gloves for all kitchen tasks. When I change the polish (non-acetone remover) I have massaged olive oil into my nails and cuticles - it really seemed to have helped keep them soft. Toenails - had a pedi yesterday. My manicurist used all new files and sanders and then bagged them up for me to take home so I can bring them back next time. Also used the Nail Envy as a basecoat and then a dark polish. I have to laugh about the dark polish to keep out UV - we've had so little sun here in New England lately and it surely isn't open toe season yet! I have been rubbing Egyptian Magic onto my feet and toes before socks or hose (you can get it at Costco) - it's worked really well. In fact, my manicurist said the skin on my feet was amazing. I used to rub Egyptian Magic onto my son's hands when he was into gymnastics and getting all kinds of rips and ugly blood blisters from the bars and rings, so I really can vouch for it.
Hair - I guess it's day 18 for me and it's falling out but still not in clumps (although I already buzzed it). I got some shampoo and conditioner with Argan oil in it, and then after patting my head dry I am patting pure Argan oil into my scalp. It has kept it from getting dry, and I haven't any pain with hair coming out. Been wearing a turban in the house and that catches strays.
Skin - I am moisturizing like crazy, but I always had dry skin so it's kind of second nature. Overall, seems to be helping and my Day 6-7 underarm rashes are all cleared up.
Wig update - I had ordered one human hair wig (yes, these are a splurge, they are more costly) - and it came light brown, nothing like the auburn color I had thought. I took it to my stylist to see what he thought and after reading the insert he said "we can dye this your color," and so he did. I've been coloring my hair for 15 years now for grays, and so he used the same formula, and then trimmed the wig. This one looks and feels like "Me," and I really like it. So if anyone is thinking about a human hair wig and your hair is darker, a light wig can be tinted to your color - and the bonus is no root touch-ups ever needed!
Now hoping that Round 2 kind of follows the same pattern (except maybe for the rashes
and waiting for the snow to melt. Please keep sharing the experiences and recommendations. So helpful as we navigate these waters!
Sunday Mocktail - Ginger Beer with splash of cranberry and squeeze of lime juice, with raspberries floating on top.
Hugs to all!!!
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All the posts are so helpful! I'm curious if any of you are doing the TC chemo continuing to work. That is the regimen that was recommended for me although I have not made my final decision to do it. (Oncotype 29, high Ki67 ). I'm not eligible for FMLA (new job) and want/ need to minimize time away... I need to work . But worried about how I will feel. Of course also worried about getting sick, blood counts- the usual. It seems like most feel ok day of infusion? I was thinking of just driving myself. Is that crazy
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Wild, thanks for all the nail specifics. I just washed dishes in hot water😱. So much to remember!
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Thanks for thebtips Wildcolonialgirl girl! I start round one of TC this Thursday. I’m getting anxious
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Scheduled to have port put in tomorrow, I am still apprehensive about taking 4-AC and then 4-Taxol prior to surgery - When I met with the Oncologists my markers had not come back. I am Triple Negative. Does anyone know why you have chemo prior to surgery? And then will there need to be chemo after surgery too? I have decided I will probably opt for a bilateral mastectomy. I am terrified of Chemo which is scheduled for 3/28. I was diagnosed on 3/8 everything is moving sooooo fast.
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BonnieML, I'm sure it depends on individual specifics, but one friend of mine had chemo prior to surgery in order to shrink her tumor, as it was too big to remove safely. She is two years out and doing well
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BonnieML, I think there can be several reasons for that. Especially if you are considering lumpectomy. I wouldn’t stress over that though.
Easier said than done with BC I kmowv0 -
Hello, all! Welcome to the new folks on the thread. I haven't posted since the beginning of the month, because my husband is ending his chemo for lung cancer with a "double-blast" the same week I had my first chemo on Feb. 27, so we were both dealing with side effects.
Last Tuesday was #2 of 4 for my AC chemo. Wednesdays are okay although I stay home, because I have the Neulestra OnPro unit attached to my stomach, in order to increase white blood cells (it's done injecting meds by the next evening), Thursdays I usually go to work, and I'm discovering Friday-Sunday I'm feeling not so great, usually uncomfortable, like having the flu and no energy. I'm just now starting to feel a little better, and if last time is any indication, will be able to go back to work Monday or Tuesday and feel pretty much back to normal, except for feeling tired. I'm looking forward to that! The routine was pretty similar to the first time, except I was prepared for side effects with better countermeasures and they were fewer this time, though still tough.
The steroids make me really uncomfortable during the day at the worst times, so I'm using cannabis edibiles to calm the feeling of not being able to find a comfortable resting position sitting or laying down anywhere. We are in a state where that's legal, and it has helped me. Then at nightime, I take a small dose of Ambien, 5-10 mg, and that's helping me sleep through the night.
I was told 14 days for my hair to fall out, and I still had my shorter hair (from cutting my long hair for the wig) at my second chemo, with no signs of falling out yet. Then POOF the day after my second chemo it was falling out in huge clumps. Very annoying! So I had it shaved on Saturday, and am now trying on the wigs and hats I bought, including the wig made out of my own hair from ChemoDiva.com, which turned out nicely, I think! They had it back to me in the 7-10 days promised, and with a hat on, it really looks like my own hair (which it is).
I'm mainly wearing a comfortable slouchy skater girl type of hat though, although I don't look much like I'll be doing any skateboarding tricks anytime soon! I just ordered more of them because they are so comfortable. Soft on my head, and breathable. Here's a link if you want to see what they look like.https://www.amazon.com/gp/product/B07517MX57/
I'm sorry for those of you who are so anxious about the upcoming chemo and hair loss. You are strong, you can handle it, and it WILL become your new normal. Plus, it's temporary, keep remembering that! I found it helped to focus on a chemo kit, including one I carry with me at all times in case of side effects, and gathering all the over the counter remedies my doctor told me to have on hand in case of a side effect, so I didn't have to run to the store at the same time I was dealing with it. I put it in a big clear acrylic box and labeled it Cancer Stuff, so I didn't have to dig around to find what I needed.
I just ordered a variety of eyebrow templates and pencils, and small baby lashes, to be prepared for the eyebrow and eyelashes to go next. I have a couple of occasions coming up I'd rather make sure I have the illusion of hair for!
vball10 After my first bout of reflux, I've been using OTC Nexium once a day in the morning, and that cut the reflux completely out, much better than Tums did for me.
I've been using ointments for dry skin, cuticles (Sally Hansen Cuticle Massage Cream with Apricot Oil) and rough skin on my feet (Kerasal ointment), and it's more effective than lotions for me.
Hang in there, everyone, we're all in this together!
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Morning ladies!
Loki, I am on TC and working from home, mostly because our teams travel a lot for conferences and at this time of year there is a lot of sickness in the office, but once that ends I plan to be in the office. Try to schedule your chemo so your "bad" days are on the weekend if that fits your work schedule. I took Decadron (steroid) day before through day after my infusion and your steroid days you feel pretty good - my first infusion day (a Thursday) I went grocery shopping after, took a walk, ran laundry. Ditto for Friday - I did use sick time the first infusion round - but could have worked all day. Then Saturday afternoon and all day Sunday were my "bad" days, by Monday I was feeling a bit better, and improved that week. The one caution I got - your first infusion you really should have someone with you, in case you don't feel like driving afterwards. Once you go through the first round you'll have a better sense of how you handle it. Our company works with medical societies and we manage their educational conferences, so I have a lot of resources to tap into - and it seems fairly consistent that our "response" to each round of chemo should be similar each time - providing we use the same meds, etc. Also had a dear friend go through this and she echoes that - she learned her personal "schedule' and then was able to work during her treatments.
Downdoggie - I hear you - too much to remember! LOL!!!
Toughcookie - I have round 2 of TC this Thursday - will be thinking of you. Share any concerns upfront with your nursing team, and ask questions.
BonnieML - yes, chemo before surgery is generally done to help shrink the tumor. And we were all so apprehensive about starting chemo - we are here for you! It all does move fast at the beginning and at least for me felt like the world was spinning. But personally, after my first chemo - it did seem to slow down and once I started back into work, focus on family, etc., life came back into perspective a bit. The waiting and not knowing is the absolute worst. Hang in there, and try to educate yourself as much as possible. The more you update your profile here the more wonderful articles and resources you have available - take advantage.
Happy Monday to all.
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BonnieML wrote:Does anyone know why you have chemo prior to surgery?
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for me, it is because the tumor is so close to my nipple and the aux nodes are so big. My SO said she would have to take too much tissue around the nipple and it would cause a huge dimple. She would also have to take too much tissue under my armpit which would lead to lymphedema and she wanted to avoid that for me (yay for good surgeons!!). So I'm doing 6 treatments of TCHP, first one was last Friday, then we will re-assess to see if surgery is where to go next. One step at a time!0 -
Wildcolonialgirl- Thank you so much for sharing your experience so far- it is so helpful. And you’re right- it’s just scary thinking about it before that first treatment. And overwhelming. Sometimes my head just spins. I hope your treatments continue on the same path as they seem doable. I’m thankful this site and you are are allhere to share so we can get through this together. Loki
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BonnieML, I'm triple negative and having chemo before surgery, too. My MO said that besides attempting to shrink the tumor, it is to prevent micrometasis (metastasis too small to be detected by scans). Triple negative is aggressive, so it seems wise to try to stop it in its tracks before it invades any more tissue. I had my port put in on Friday and start chemo tomorrow. Yeah, it does feel like being caught up in a tornado. Not in Kansas anymore!
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grrrr, I was scheduled to start chemo on Thursday but I just saw my PS and I am on to healing complication #3 that she wants resolved before I start chemo. She’s worried about infection and if I have to start chemo before it heals I will need to deflate the expander and risk causing more issues with the fold i have. This is getting stupid
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Went back to work first full day post chemo today. Pretty much kicked my butt. Worked 1/2 day Thursday and Friday, probably could have worked a full day on Thursday. Weekend - felt very tired, short of breath, weak. Sunday I felt pretty good, went to a movie with the kids. I am just having such back aches - more next to my spine than in it. I have been taking tylenol and claritin, but not sure if it is the neulasta or just the chemo. I am having labs drawn on Wednesday. Not sleeping very well, can't get comfortable. Good to know this will improve. Just feel like am coming down with the flu 24/7.
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I’m starting TC chemo Monday 26th and I’m pretty nervous ...Paxman cap received and ready to go.
Tough cookie - chemo always takes precidence to reconstruction, is your MO on board with putting chemo on hold? It Is recommended not to wait to too long to get maximum benefit from chemo. You should have a conversation with your MO.
This site has been such a help ....everyone here sharing their experiences is helping me through this journey x
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Well, its day three post my first dose dense AC. Spent Day 1 in the ER with double vision, day two shaky and near the bathroom (some nausea and vomiting) and today, just dragging and shaky, still with double vision and a headache. I suspect they will dial back my steroids and my Zofran. The ER docs were surprised at how high my white blood cell count was. My onc had to tell them why. Perhaps they will dial back my Neulasta a bit too. I'm hopeful tomorrow I'll feel better because I still have to get my taxes done! On Friday, I go to get my hair made into a wig so I won't freak out my clients when my hair actually does begin to fall out. Anyone else feel shaky from their AC?
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May07 - best of luck!! You got it!
My MO isn’t aware of the proposed chemo delay yet. Both myself and the PS tried to reach him today with no luck yet. I think I will delay for a week but not more. I feel that is a good balance to try and heal toavoid getting a terrible infection without too much delay.I know they want to get it done stat but an infection during chemo could possibly cause some even bigger issues, that is the PSs concern more than the reconstruction itself. That and my MO says chemo only gives me an added 3% benefit due to the cancer bring VERY highly ER & PR positive.
Persnickety - Sorry to feel younsre feeling so down. But part of the journey over! I am off work for a bit, hoping to work part time from home during chemo but we'll see!
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Thank you and I apologize for the delay in responding
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Thank You - How are you doing?
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Thank You Wildcolonialgirl for sharing your experience with your first treatment - looking forward to getting this started and eradicated this out of my body - I came across the following when researching staying positive out on the web that I am going to follow and thought I would share it:
MAINTAINING a positive mindset when fighting a killer cancer is easier said than done. It was six days before Christmas and two days after my 33rd birthday when I was diagnosed with Grade three breast cancer. I knew a positive attitude would be crucial to guiding my children through the ordeal but it also proved to be a potent healing tool. Here are five ways I stayed positive through cancer treatment.
1. REPLACE "I HAVE TO" WITH "I GET TO" - It's easy to feel overwhelmed by all the demands on your time and energy when you're not feeling well. My daughters were aged five and three when I was diagnosed with breast cancer, all our family lived interstate and my husband had a demanding job, which required frequent travel.
I made a simple but profound change to the way I spoke to myself about my life and it changed my perspective entirely. Instead of saying "I have to have chemotherapy next week", I'd say, "I get to have chemotherapy next week. How fortunate am I? How many people in the world would give anything to access lifesaving medication?"
Rather than, "I have to get up and make the children breakfast," I'd say, "I get to wake up and make my children breakfast". I don't need to look far to find people who are desperate to have children. I realised I have created a life of abundance for myself, which is full of opportunity. I have so much to live for.
2. GET TO KNOW YOUR BODY - No one on this planet is going to care more about your health and wellbeing than you do. You may have excellent doctors and well-meaning friends who know about health but you are the only person who knows what it feels like to live in your body.
Pay attention to the way certain foods make you feel and if you think something isn't serving you well, see how you feel without it.
Not long after my diagnosis (during the awful period where I was waiting to have surgery) I went out with friends and drank too much champagne. "Life's short — I'm only drinking French bubbles from now on," I said. I drank a lot.
That night I woke up with terrible anxiety and the following day I was horribly depressed. Alcohol had always affected my moods in this way but the game had changed and I knew wine wouldn't help me become cancer-free. I haven't touched it since.
3. NOURISH YOUR BODY - Whether your diet is "everything in moderation", #glutenfreevegan or somewhere in between there is one universal piece of advice all experts agree on: You need to eat more vegetables.
Cancer treatment can be nothing short of brutal. Your doctor might tell you to steer clear of supplements and natural remedies for the duration of your treatment but no one will tell you to stay away from green leafy vegetables, which will help nourish your body with vital minerals (iron, calcium, zinc, iodine, magnesium) and vitamins (A, B group C, K).
I now aim to eat nine cups of veggies each day which is surprisingly easy to do when you incorporate smoothies and soups into your diet. Experimenting with superfoods helped me feel like I was contributing to my own healing, which is incredibly empowering.
Your doctor might say there is no strong evidence to prove green tea helps combat cancer but it certainly can't hurt. Neither can turmeric or hemp seeds or pomegranates for that matter.
4. DEFINE YOUR BOUNDARIES - During six months of chemotherapy I felt inundated with people reaching out to me. People wanted to see me, help me and keep me company but there came a point when I knew I needed and wanted nothing more than to rest in solitude.
I came up with a simple response to all the messages: "Thanks for your kind message darling! I'm in hibernation this month so perhaps we can catch up in June? In the meantime, I promise I'll be in touch if I need anything. X"
This message, or a variation of it, helped everyone. It freed me of obligation — the obligation to go out, look well, put on a brave face and socialise when I didn't want to. And my friends were grateful to know what I wanted — they weren't being ignored or rejected and they knew when they should contact me again.
5. AVOID TOXIC PEOPLE - There will be people who manage to make your illness all about them. Shut them out. There will be people who make you feel guilty. Shut them out. There will be people who make you feel bad/sad/angry. Shut them out.
Anybody — family, friend, colleague — absolutely anybody who isn't supportive or helpful will need to be sidelined while you undergo treatment. You will have enough negative emotions coming from within to deal with so it's important to protect yourself from external negativity.
The break up needn't be messy or permanent. It can be easier on both parties if you let the person know you need to take some time to focus on yourself for now. You can simply stop returning messages and calls or ask your partner or another close friend to be a buffer for you. You're not being selfish. You're making yourself a priority so you can be around to help others in the future.
While I never want my disease to define me, discovering I had cancer was a defining moment in my life. I now live with gratitude, mindfulness and courage. Illness is painful and the experience is far from positive but with the right attitude, it has the power to change your life for the better.
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Thank you Bonnie
X
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sillyoldrabbit - Thank you so much for the information and I hope your first treatment went well today - I had my port put in yesterday morning and an echo in the afternoon, will have a MRI tomorrow and start AC on 3/28 next Wednesday - I am determined to fight this battle with a positive attitude and I think this forum will help. You and I have a similar diagnose. Thanks to everyone sharing their experiences - we can all get through this.
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BonnieML,
I just read your post today and I'm so glad I did. You have added insight into the journey we are all going through.
I wanted to let you know that whatever life has in store for us we can get through it. I find being GRATEFUL for the people in my life that have given me joy, courage and love most comforting. No one knows what our destinies will be but I am thankful for every day I can spend with friends and family and even the kind strangers that extend their prayers and good wishes.
Thank you for your lovely post and I am hoping you will have many more years of happiness and love.
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BonnieML, what's your diagnosis?
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