Chemo starting December 2017
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Hariry, how are you feeling? My #4 I scheduled for Feb 9th. And oh girl am I dreading it. I do NOOOT want to go and don’t want to do it I want to run away. And if someone else tells me on but you only have one more it’s the last one I think I’m going to blow up. People mean so well but they just don’t get it. I am just so dreading it it’s crazy.
Gigicommon, so sorry about your blood pressure medication. That sucks and seriously never helps or is a good time. 😫
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#3 chemo is delayed because wbc is too low. Really upset about this.
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Sswp - What were your WBC count numbers? I am off the charts with 32.7. I wish I could share some of that with you.
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Anticipating #4 was absolutely awful (major understatement - I was freaking out) BUT it was a shade easier than #3 to physically. Four of these massive doses is a HUGE accomplishment, so imagine yourself on the last stretch before the summit of Everest. You’ve seen the pictures of women with ice in their eyebrows and nearly limping in pain. You deserve the same recognition for getting this far.
Day4 taxol&herceptin today feels like a cold. I couldn’t bare to trust that it would be easier until I had done it, but this is nothing like AC
GenevaC
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Gigi: I think it's 0.6 so extremely low.
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Sswp - My heart goes out to you. Are you receiving neulasta? I'm sending you positive WBC vibes. Lord knows my cup is overflowing.
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Gigi - no I'm not suppose to be getting neulasta until rounds 4-6 when I switch over to taxotere.
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Morning all! So sorry you are delayed, sswp. Hang in there. I imagine the feeling of “hurry up, let's get this done!" That's how I feel, anyway, and haven't had to deal with delays. Hugs.
GenevaC, so happy to hear you are doing fairly well after Taxol and Herceptin. It freaks me out a bit that I'll be going ni weekly, but just another phase!
Here I am day 8 after AC #4. Pretty much a mirror image of #3. I felt great days 1-5. Day 6 I hit the wall and left work early. Slept for 14 hours straight. Worked 2 whole hours yesterday and slept the majority of the day/night. I have zero energy and feel super shakey on the inside whenever I get up. This morning, I'm awake and feel ok unless I get up. So...couch day! My surgery is Wednesday, so my husband wants me to do nothing until then. It's a struggle when you want to do things, but can't or shouldn't. Deep breaths and self talk time.
Newest side effects...fingertips are all sore and cracked. Trying to stay on top of moisture cream. Heels are sore to walk on, too. My mouth is about the same as with #3. Spent $100 on the RX Magic Mouthwash hoping to lessen the effects. It is so godaweful nasty 🤢 that I'm not using it like I should. But, I think it does help. My throat isn't as sore, but food still tastes horrible and no appetite. I'm down 15 lbs. now. Ironically, I'm ok with that but know my nutrition is suffering.
Another day toward wellness
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I'm so sorry to read so many of us are struggling right now. SSWP, so sorry to hear you had to postpone due to your WBC count. Sending you healing thoughts so you can get back on schedule as soon as possible.
I am getting ready for #3 this morning and am not looking forward to it one bit. I keep hearing "you're half way done!" but I know these 2 will be the hardest. My OM reiterated that with me at my appointment yesterday, and based on my labs and recent ER visit, he is encouraging me to greatly reduce my work schedule or take time off. I'm waiting to hear back from the FMLA office at work to clarify a few things before making a decision, but I am going to take his advice for one of those two. I also bit the bullet and requested a temporary disabled parking placard. Being in the field of special education, I know how important the disabled parking spaces are to those who need the assistance. I don't want to use it if I don't need to, but there are days when I am just soooo tired and saving myself those few steps will be a huge help.
Had a consult with my PS yesterday too. I had already made the decision to have a bilateral MX, and my OM strongly supported my decision based on my medical history, so I know it's the right one for me, but wow... this is going to be a heck of a process. I have had plastic surgery before (reduction, weight loss surgery, skin removal post weight loss), but all of those were intended to improve me physically and visually. This surgery is not going to help much in the looks department. :-(. Trying to wrap my head. round that.
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SSWP, wow that is really low. Mine was low too but it was 1.4. I do get the neulasta so it does bring it up in time by the second week. I also eat a ton of bone broth soup. I make it from scratch I eat that a few times a week and the week of infusion. Not siren it helps honestly pen if it’s just the neulasta but munch WBC goes up to a very high normalno range. Sending you prayers so yours goes up too!!!!
MJB yes I’m havig tons of dry skin especially on the heels and feet omg it’s soooooo bad.
GENEVAC, I am loving your Everest comparison to ac it’s soooo true and I have felt like a giant baby at times but this crap is the worst. I have said if Taxol is near this bad I literally cannot finish. I am so glad to hear from many women that Taxol is easier on them and that they have no nausea on it.
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Just when I thought I was starting to feel better, the mouth an throat soreness has hit full force. Ugh. I’m praying it will be better by Wednesday asI can’t begin to think what intubation will do with such soreness going in. I’ve decided to eat only milkshakes, pudding and jello for the next few days. I’ve been rinsing/gargling with baking soda/salt and the Rx mouthwash. No relief yet. Any tips?
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mjb, ugh I’m so sorry you’re having such problems with mouth sores they are so painful. I wish I had something or some advice for you on this topic. They gave me that baking soda recipe at the oncologists office I haven’t had too many problems with the sores. I hope others can offer some advice. Good luck girl
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Courage my fellow travellers - we are on an incredibly difficult journey. You are wonderfully strong women.
Yes, it gets worse before it gets better. I found no heroism, no glory but I dragged myself through the mud and I’m done AC. Know that your vital core safe, that you will bloom again in the spring and drag yourself along for the last doses. Do take time off or whatever it takes. Being kind to yourself is not weakness.
Taxol & herceptin is a wonderful break so far. I’m going back in again Tuesday but meanwhile have been to Annecy for a girl’s weekend with 5 good friends. I made them each a card with a special thank you for the inspiration/ support I get from each of them. It felt very good to be able give back a little.
GenevaC
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Ladies of December group, I decided to cut and paste from my recent post to the November chemo group (I lurk there to see what is yet to come). Someone posted about dryness in fingertips and toes and I learned in the last few weeks that it could be mild neuropathy. See below. Also someone was looking for resources about non-chemo treatments to augment conventional treatment. I'm a Girl Scout in this regard and am listening to my docs and following their instructions, but I also consider some of the "natural" treatments suggested by the Physician's assistant (PA) and other BC survivors. If they say "it can't hurt", then I consider it. I added a note about a book by a doctor who seems to have integrated the two approaches and lived 17 years after a brain cancer diagnosis.
I'm Day 2 after "full cycle" #3 and facing down a crappy Week 1. But having this group as support really helps. Hugs to all.
Mindy
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Hello ladies. I'm actually in the December chemo group but lurk here to get an idea of what's to come. I am so inspired by your mutual support and information. I am on Day 2 of "full" Cycle 3, (weekly Herceptin) with 3 more cycles to go. Here's some things I've learned:
Dry fingers, toes and heels: they could be from mild neuropathy. I started with dryness and it has progressed to warm/hot pain, tingling and even phantom tingling in my lips and around my mouth. My MO dialed back my taxotere by 10% this cycle, hoping that it will lessen the neuropathy. As with most side effects, he said that it will reduce after chemo stops. But he would not guarantee that there might not be some permanent impact. A little research (Dr. Susan Love Research Foundation, among them) shows that could be true. So I took ice packs to this cycle and used them on my hands and feet while the taxotere was going in. MO was neutral on this because there are no definitive clinical trials, but many on this board have used icing (like cold capping) and have not gotten neuropathy. I am Type 2 diabetic, so this was worth my time.
Books on holistic treatment: I have been inspired by "Anti-cancer: A New Way of Life" by David Servan-Schreiber, MD, PhD. A fellow BC survivor recommended it to me and I found it to be a very conversational way of transmitting some of the latest research into things each of us can do to counter the "cancer environment" we live with. Not preachy or "all or nothing". He lived for something like 17 years after a brain cancer diagnosis embracing both conventional and alternative approaches. So there's little things in there I am using now, and may use for the rest of my life.
Thank you for all your positive energy and most notably, your support for Blair. I have you all in my prayers.
Mindy
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Mjb my heart is with you. Mouth ulcers are painful let alone intubation pending arrgh...
This is why I use, which helps with reducing them. You and your upcoming surgery are in my prayers.
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Thank you Hariry! I’m feeling a teeny bit better today. Knock on wood. I might pop in to work for an hour, but really just want to lay low until surgery to be the strongest I can. I have the biotin mouth rinse, too. Goal it to rinse and medicate ON SCHEDULE!
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Hi Everyone,
I trust we are all hanging in there. I had my final AC #4 about 2 wks ago and I must say the last cycle was the easiest for me. No nausea, no metal mouth, no stomach wringing out, no private part feeling like it want to drop out of my body. What I did have tho was some severe headaches, tiredness and sleeplessness. To my surprise I was extremely hungry and thirsty. So I have been devouring everything in my path still can't do anything too sweet, salty or spicy. I will be starting taxol soon maybe next week.
Right now its the Carnival season in my country so everybody is partying and frolicing.
I just wanna say ladies this journey is not easy it is stressful (tears, anger, pain, doubt, fear and so much more). I too think about reoccurence but the mind is a powerful thing I cannot give energy to negative thoughts. Therefore that thought has to become a distant/faded one. I am only thinking about healing, strength and living to see my 100th birthday. My prayer every night is for chemo to kill the bad cells and for God to protect and rejuvenate the good cells. I am claiming victory, i'm going to be on the winning side because as a believer of the living God I believe in his power.
I have kinda mapped out the way forward for me after all the medical treatments are done. I would love to know what some of you all plans are.
That is my strategy I am termed tripple negative survivor for the rest of my existence on this earth. As far as i understand they really do not know what triggers the tripple negative cancer genes and there is no specific treatment. (If I am wrong lls let me know) I firmly believe that it is stress/worry. So my plan is to finish up the treatments taking it 1 cycle at a time, then radiation (1 cycle at a time). After the treatment I am going to find out if there is any test they can do to tell me that the cancer is in remission if there is no test then I am going to check the health of each of my major organs individually. Then I am going to eat healthy, exercise and enjoy the rest of my days on plant earth until my father up in heaven is ready for me. We can only change what is in our power to change.
WE HAVE THE POWER TO STARVE THE CANCER CELLS AFTER TREATMENT BY EATING HEALTHY (GREENS, FRUIT& VEGETABLES, HERBs & SPICES, WATER ETC), GETTING RID OF TOXINS, TRY TO MAKE THE BODY ACID FREE. IT WILL MEAN GIVING UP CERTAIN COMFORT FOODS BUT THAT'S A SMALL PRICE TO PAY FOR OUR LIFE.
I want to encourage each of you stay strong. We can do this. We can beat this. Just take it 1 cycle at a time. Slow and steady. Stay the course. Focus on the light at the end of the tunnel, which is our lives. No giving up. When you're feeling down come on here and talk or cry it out either way we got you. I have found comfort and strength in this space.
Good Night. Warm hugs from the Caribbean as always.
Dark13.
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Dark13 I LOVE YOUR POSTS! 💕 Thank You for you light, wisdom and warm hugs! I'm so happy #4 was breezy for you. That's amazing! Your post treatment plan sounds great. I'm definitely going to look to you for the inspiration
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Well DARK13 I wrote a very nice and long post about my pnasband when I pressed the button to post the darn thing disappeared and didn’t post. I’m not te typing it lol. Sometimes I do hate this website.
But on a positive note I dolove your post and love your plans and everything you are planning!!!! 💖💖💖
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Swewing...Been thinking about you. 💕. Hope all is well. Check in when you can.
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Love, love, love the support of everyone here. I can’t remember who had the fear/nausea of going in the hospital - I take Zyprexa for that and it really helps me. I take one pill the night before chemo and then three days after.
I finished dose dense AC and I start dose dense taxol tomorrow. I’ve read that it dries you out even more and can cause nose bleeds, so I bought myself a humidifier to run at night. I’m feeling optimistic because I’m halfway done with chemo. I find out tomorrow when my double mastectomy will be scheduled.
Thank you ladies for posting, it sure helps me to know I’m not going through this alone.
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Thanks so much for posting Swewing! Feels good to be done with the dose dense AC Chemo, doesn’t it?! Although physically #4 was the toughest for me, mentally it is such a relief to be moving on to the next phase of treatment. Best of luck with your first Taxol tomorrow
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Nice to hear so many of us doing well (Daniz - hope you are doing ok this round).
Round 2 taxol was fine yesterday. I’m slow & fatigued, but noting worse. Also saw cardiologist who checked I haven’t had too much damage to my heart from the adriamycin. I haven’t had a nose bleed but I do have blood in my nose throughout the day. Humidifier is a good tip!
Nails - I’ve been given a special nail polish from Laroche Posay which is clear but blocks UV. This should prevent my nails blackening and falling off.
Swewing - wish I had had better anxiety meds for the end of AC. I was so twitchy with phobias about treatment. But they have faded with taxol.
Dark13 - I asked a local BC woman hoe she manages to keep going, as she has chemo every 2 weeks amd like will for the rest of her life. She says she really focuses amd doing fun things and planning by small pleasures between treatments. I’m scheming for a little family beach trip when I’ve got a break between taxol & radiation. Gives me happy goal
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Hey there girls,
Happy to learn that passengers on this same boat are mostly doing fine. (Laura and kayakmom, haven't been hearing from you hope you're doing well and busy with work)
The past one week has been kind to me. Quite energetic, appetite alright, no mouth sores, sleep well etc. God is good.
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hi all,
I hope you’ve all been hanging in! I’ve been keeping busy with work but have been feeling mostly okay. Third round has been delayed BC my blood counts are too low (.9) when they should be 1.5. I’ll give it another try next week. They plan to lower the dose of the Carboplatin which is likely the culprit for the low counts. I’m on a high dose to begin with since I’m relatively healthy (she said it was a 6 units when Standard is 4)
I saw some others struggling with this. It’s frustrating to be delayed but my oncologist assured me it will make treatment no less effective. Rest up and be resilient!
I’d like to ask what kind of changes everyone has made to their lifestyle. Aside from cutting down on alcohol (from A few glasses of wine on the weekend to 0-1 per week) I’m working on switching out products with parabens/pthalates as they are hormone disrupters. Very hard to figure out which products have what though. I found the blog gimmethegoodstuff which posts great reviews of all sorts of products - geared towards moms, there’s lots of baby products reviewed. The guides are very useful though and I ordered some lavanila deodorant that was recommended. There’s so much bad stuff out there it’s tough to avoid.
Any favorite brands or resources or organic/all natural products?
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I went in for my 4th treatment yesterday and it was delayed as well because my platelets apparently tanked and got slightly more anemic. My oncologist also said he'd be lowering carboplatin from 5 to 4. It was difficult to hear I had to wait another week and that he's going to lower doses but good to hear it's not just me. Last round wasn't so so bad and I felt good physically when I went in yesterday so this really wasn't what I was expecting. Trying to stop being upset that my body isn't handling it better because there's no part of me that wants dosages lowered. Annoyed that I'll have to spend a second week in a row making preparations physically and mentally for going in again because it's difficult enough in the first place.
For lifestyle changes, I'm not really so concerned outside of what the known causes are because I'd lose my mind with what all the hypothetical causes are. Feel like the main ones for me are alcohol, lack of physical activity, & high body fat percentage. I've only had about 2 beers since I was diagnosed & I miss it dearly. Since I work a desk job, trying to take breaks & get up and be more active during the day. & of course continuing that lifelong struggle of trying to be skinnier and fitter except with extra beating myself up over it than before.
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EJean, that’s great to hear that you have made some lifestyle changes already! I am definitly gonna check that site out that you mentioned. I really want to know and learn more.
I am currently not eating as health and clean as I should. We are having a meal train going every night so people are ordering food for us a lot and I’m not too picky at the moment while on this miserable chemo. But after I plan on eating vegan or maybe veviterian I want to still have some fish. I plan on eating more of a raw vegetable diet. Not saying that it’ll help I don’t know that. But I’m definitly gonna give it my all. I haven’t had a drink since December 28th lol.
My genetics counselor mentioned washing fruits in vinegar and water or soaking it. No bottled plastic water.
I have met another girl going through treatment and she is seeing a naturopath or whatever they’re called. She loves all the advice she’s getting.
Anyway good luck everyone. Friday is AC#4. I am FREAKING out. Literally freaking out. Also I haven’t been able to drink water y’all. It’s soooooo bad. I feel like I haven’t been doing myself any favors with that!
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I just had my first dose dense taxol. My dr gave me this handout to help with neuropathy. Have any of you tried any of these?
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EJean, been wondering where you were! We were on the same regimen. You're taking the delay very well.
My MO lowered my Taxotere by 10% starting with my 3rd cycle because my neuropathy was messing with my QOL. He admitted that they start with the highest dose your health status would support and assured me that cutting back would not change the effectiveness. With 3 more "full" cycles, radiation and Herceptin until the end of the year, I have this picture of EVERY cell in my body dying at least once and only the non-cancer cells regenerating. That's sure how I feel during Week 1 each time.
Regarding the changes to personal products, etc, I'm recommending The Environmental Working Group website. www.ewg.org
They have several large databases you can search, most importantly, "Skin Deep" which has scores for more than 70,000 products including makeup, skin, hair, fragrance, baby products. Lots of good search functionality although it can get a little daunting as to how many brands have bad ingredients. I've just started going through my current brands and when their scores are bad, I start looking for alternatives. There are also databases regarding drinking water, food additives and cleaning products. The science is legit. Try not to drive yourselves crazy.
Swewing, my PA recommended the Acetyl L-carnitine and alpha lipoic acid as well. She said they would boost my nerve cells' ability to rebuild after the Taxotere damage and to keep taking them after chemo ends because their full effect would take 30-60 days. I have to admit that I'm petrified the neuropathy might not go away. Starting with Cycle 3, I began "icing" my hands and feet during the Taxotere infusion because I'd read on these boards that several women have used it and didn't have neuropathy. It follows the same principles as cold capping: keeping the taxotere from reaching the hands and feet. I'm not going to know for months if it's going to work, I guess.
Hoping to pull on my boots tomorrow and slog through the snow to go to work. I'm going quite stir crazy with the cold and snow!
Hugs everyone,
Mindy
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Daniz, was it you who got iron infusions? Do you know what your hemoglobin was? I guess at my preop on 1/31 mine was 8. They redrew yesterday before surgery and it was 7. I was *this* close to a blood transfusion. Blood was on standby and the anesthesiologist was able to control everything during surgery. I followed up with my MO this morning and am waiting to hear back. I guess this explains why I was so exhausted last week.
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