Chemo Starting August 2019
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I could feel my cancer and would describe it more like a achy/swollen heat. During chemo I could feel the chemo working. After my first chemo a few days later I felt a huge fizzy sensation and when i touched the tumor it was MUCH smaller. During IV C, it would tingle and mildly ache. I could feel the whole nerve network of my breast intermittently tingling or aching. I used the sensations as cues to do a visualization of my immune system 'eating' my cancer.
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I appreciate all the comments and information. I also appreciate the comments from those visiting from earlier treatments.
I am also anxious that the steroids will keep me awake for several nights. Does anyone have experience or suggestions?
I have not had any chemo education from my Dr office. Maybe I will call and see what they have to offer.
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Just chiming in to wish all the August ladies the best.
Even though I started neoadjuvant chemo in March, I'm restarting chemo as adjuvant again this month--so I guess I am legitimately and August participant. Long story short--I completed AC then started onTaxotere. I had a bad reaction to Taxotere (hand/foot syndrome) and decided to stop chemo and go to surgery. In July, I had a lumpectomy with SNB and then two week later had re-excision with AND. So far, the recovery has not been bad.
In a week, I'll start on dose dense Taxol for three infusion (I got credit for the one dose of Taxotere). I am very worried about the potential for neuropathy but due to my cancer specifics the MO kept asking me to reconsider finishing with a taxane drug. I live alone so it will be a challenge for me to keep up with the icing of my hands/feet and mouth but I think it's important (I have some previous neuropathy before cancer). The center I go to is inner city and does not have sufficient nurses to help and we don't even have an ice machine, so I have to bring with me. Wish me luck.
As far as the AC, it was not easy but doable. I also managed to go to work every day except infusion days. I had infusions on Wednesdays and my worst days were Saturday and Sunday. I was very anemic at the end and had very low WBCs and ended up with pneumonia. I never had problems sleeping d/t the steroids and was very fortunate not to have nausea. I think I took 2-3 anti-nausea tablets for sleep. I did have mouth sores after my 2-4th infusions despite icing.
Words of wisdom: Ice your mouth during infusion to help with the mouth sores; If you take neulasta, be sure to take Claritin a few days before and after the shot; Wash your hands frequently and limit eating out; Use the numbing cream an hour or so before your infusion to numb your port; Ask for extra fluids before infusion as it helps with dehydration; Your taste buds will change so find creative ways to drink hydrating fluids; Use a gentle toothpaste and brush and gargle (baking soda and salt) frequently;
If I think of anything else that might be useful to you, I'll chime in.
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Hey everyone !
Just another little update. Today is my day 6 since treatment and wow I'm feeling almost brand new. I finally slept well last night and woke up feeling much more clear minded. I'm still taking it easy, but I was able to journal some without my mind feeling so thick. I can say the steroids suck, they def increased my anxiety plus create more heat in the body, but they do wear off. I'm just so excited to be able to feel better today ! I'm looking forward to a walk this evening when it's cooler.I hope everyone is doing well and thank you for sharing. It has helped me feel so much less alone.
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Tips for AC: talk to your MO about taking CoQ10 to protect your heart. I got the weird metallic taste almost immediately so I had to seek out flavored water. I drank Flow and then later I switched to Hint. You can also flavor your own with fruits or the little bottled flavor enhancers. I did try to ice my mouth during AC, take Popsicles or ice chips. I made up the baking soda and salt mouthwash and would take swigs when I went to restroom at infusion. Later I found a great mouthwash for sensitive mouths called CloSYS. Have had no issues with mouth sores. I continue to use that mouthwash during Taxol.
I had very little nausea during AC, but I kept small bottles of ginger ale with me all the time and would take swigs when I felt any nausea coming on and I also kept the Zofran in my purse, along with Imodium and Colace laxative. I was more constipated during AC, sorry if TMI but you need to get out ahead of any of that.
My MO was a big fan of taking Melatonin to help with the steroid sleeplessness.
Taxol tips: To ward off neuropathy I took B6,B12, alpha lipoic acid and L Glutamine throughout, but talk to your MO, some don't like you taking these. I bought the Naturacure frozen foot socks, 2 pair, and used them at every treatment. Also iced hands by clutching some gel ice packs. I have had no nail issues and only some very mild neuropathy that generally cleared before the next treatment. I had a lot of other taxol ladies in the infusion room see me icing and ask me about it and they would say they couldn't do it. Yes it's cold! But I did it anyway, would rather be cold for a couple of hours and not have neuropathy.
I found taxol to be much easier than AC. Be careful if you go read the weekly taxol thread, not everyone has those problems with taxol.
I lost all my eyelashes and brows during early taxol and they haven't returned. Some ladies just thin, but I wasn't so lucky .
Hope some of this helps. Fight on sisters! MM.
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They just called me today, I also start chemo Aug. 14.
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Thanks MsMarie - I am starting AC on Friday, then following it up with Taxol after AC is done.
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Hi all,
My name is Marta, I am 62 years old, 5'1, 128 pounds. was diagnosed with Triple Neg metastic breast cancer, Stage 3, on July 9th 2019, found incidently for another scan. I have had normal mammos, last one 09/2018, I've been in a tornado every since. scans, X/Rs, biopsies, IVAD placed, blood work, met with my cancer team. Chemo to start Friday 8/8/19. I'm involved in clinical study of drug atezolizumab. Unknown if I receive the drug, double blind study. I'm going to receive chemo meds of paclitaxel, carboplatin amd atezolizumab/placebo for 12 weeks according to protocol, the phase II of doxorubcin, and cycloposphamide, plus atezolizumab/placebo, every 2-3 weeks for 4 doses, then surgery, radiation, or whatever comes next. I'm scared, I have worked in the health care profession for over 44 years as an Emergency Nurse, RN BSN CEN, this is something I know little or nothing about, but learning real fast. I have worked full time since a very early age, and now out of work indefinately. So many emotions, ups and downs, Do you folks out there feel the same? I have been very physical and active, ski, kayak, gym. walk ect. I feel lost, seems like I lost my identity in all of this. Does the tunnel slow down, and allow a person to think rationally. From research I have done along with my cancer team, I know this is an agressive cancer. I worry about financial costs, haven't retired yet, not eligible for SS until age 66 and 7 months. My husband who is 10 years older have very bad heart disease, with 6 vessel by/bypass, and 2 heart attacks later, now has 3 of those vessels closed. I'm venting right now, nervous for this coming Friday, and what that will bring. I try to remain upbeat, I have a great support system, Any one else in this situation, or has been, please off insight. I just want to move forward, get this started, and live my life.
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@Martaj - I read your post last night and have been thinking about you since. Wow, you've been hit with a lot of stuff.
And, YES to the feeling of loss of identity. I had a few weeks feeling this way around the time of my mastectomy in June. There were (and are) all the doctors appts, and every conversation or text I got was about cancer or "how are you?" (which I of course appreciate, but it was about cancer). Then there was all the time needed for self care OR worse, things I could not do like garden or house projects (I call that suspended animation - I am alive and well, but cant do anything). It felt like ME and my normal life had disappeared. I wanted things to just seem NORMAL, but it seemed like normal was getting farther away. Fortunately I have had a few weeks of recovery and working again, so things do seem normal right now. But port goes in on Friday and Chemo starts next week--we'll see how normal things stay.
I have been doing some meditating and that does seem to help me. I try to do it 2-3 times a week. I like a kind of meditation called EMDR. You might want to read about it before trying. Here is a favorite of mine: (site wont let me add a link so here is the exact title "
- EMDR Therapy Session - Dissociation PTSD Therapy - Music For The Here And Now to Relax
Of course there are tons of guided meditations on youtube and music streaming sites.
I appreciate having others to share this journey with.
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marta, I had TNBC, it's very scary to read about, but it TRULY can respond incredibly well to chemo. Mine did. I was 3b by new rubric (2b by old one). The response to chemo is key. Your fit and active lifestyle will help you be strong through the chemo. I send you a hug!
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I had my first TC infusion yesterday morning, starting first with a visit with the nurse practitioner. It's the first time I met her and she's great. She's a hugger which I really needed yesterday. The actual chemo started at 9:30 with port access. Since I just had the port put in the day before, I couldn't use the numbing cream. It was fine, just a big pinch. First was zofran direct to port, then a steroid drip. Taxotere started at 10:15. My MO decided to do both chemo drugs to start at 80% since I have a lot of allergies and sensitivities. Happy to say that there were no reactions during infusion! Next was the Cytoxan at 11:30. Then the Nuelasta Onpro at 12:30. The olny unfortunate thing that happen was during deaccess, the tape pulled off the surgical glue from my port and it oozed for a bit. I called about it when I got home and they said keep an eye on it and it should be fine.
It went much better and quicker than I had thought. I was exhausted the rest of the day with headache, mild nausea, mild urinary burning, acid reflux and 15 minutes of hiccups. Took Pepcid ac for the reflux, Tylenol for headache and Zofran before I went to bed. Drank 3 1/2 liters of water yesterday.
Middle of the night, I had moderate chest pain. Was gone by the morning. Facial flushing this morning and some increasing nausea. Took Zofran with breakfast. Hope it doesn't get much worse. My husband is going to come home for when the Nulasta injector goes off just to momitor for side effects.
Hope everyone's treatments are going well!
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Hi All!
I had my first TC infusion yesterday and I think it went great. I did cold capping, and chilled my hands and feet. We packed more than 100lbs of gear into the hospital between the dry ice, cold caps, gel things for hands and feet, blanket, etc.
The nurse was super accommodating to my timeline for precooling the caps and she was really patient. The caps hurt a little at first, but not enough to really bother me. I think the hands were more painful, but still not too bad.
I'd done my labs days in advance, so we didn't have to come early for that, we just started with vitals. Then we got a teaching session since I hadn't had the class, and this was great because we were bustling around with pre-cooling my head. They had some trouble finding a vein that worked on me. I asked them not to do it too close to my hands because I was doing the cryo gloves. I give the first tech a lot of credit- she could not find a good vein and got in someone with more experience. Two sticks later I had a great vein.
The pre-meds were no big deal, I didn't really notice them. Actually the chemo itself was fine too. I didn't have any weird reactions and I didn't feel anything. My nurse also commented that she had something drip extra slowly because it can cause urinary burning if it goes in fast, and I appreciated that detail.
I had an electric blanket which was AMAZING! At one point I must have hit the button and turned it off because I started shaking. As soon as we got that back on, I was good to go.
When I was almost done, they stuck the Neulasta injector to my stomach. I had the choice of back of the arm or stomach, and I was worried I'd knock it off my arm, so I went for the stomach. It made the tiniest pinch with a click when it injected the canula into me, a non-event for sure. It should go off tonight at 8:30 or so.
I needed to cold cap for an additional 4 hours after the infusion. They let us hang in the room until it was time to switch the cap, and then we did the same once we'd gotten to the parking lot. On the way home, I sat in the back seat and switched the caps myself. I'd practiced at home, so this wasn't too hard. I had no side effects last night, but I was pretty sore so I took a Tramadol and I actually slept well for at least 4 hours straight! That is exciting since my ovarian suppression has been keeping me up at night with hot flashes.
This morning I took the meds that were mandatory, and then I started having some gas pain, so I took the anti-nausea med. I got some diarrhea today, and some minor stomach cramping. Otherwise I feel good.
I'm going to try to get some exercise in here soon, although walking is out since it is raining. Guess I'll be on the elliptical.
So day 1 post infusion, I feel great and totally normal (minus the minor GI issue).
I also got my hair cut this morning. It had been long and I went with a pixie cut. My head is a little cold without my long hair, but I'm ok with the change. I don't look like the movie star who I modeled my hair off of, but luckily I wasn't really expecting that!
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I am 48. Starting chemo Aug. 22. Port to be inserted next week. Very anxious about so many things. But looking forward to sharing with each other. I do have to figure out if I can return to work with toddlers for the 4 months of chemo.The oncologist did not commit to "yes" or " no" about the job; just said I should wash my hands a lot. And I researched that I definitely should not change diapers.
Any thoughts on this?
On the topic of chemo and potentially losing hair - a lovely new friend just gave me the suggestion to shave my head once my hair starts to fall out. Will feel better
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Flowerkid, I worry about you working with children during chemo, but I'll defer to anyone who's in a teaching or childcare profession. I'm working from home as much as possible to avoid a coworker who has an always-sick toddler.
I got my hair cut short last weekend, shorter than it's been since I was cutting teeth. I don't love it but my daughter keeps saying I look cute. I wanted to take a step toward hair loss but not go all the way just yet. Maybe that will work for you as well. Good luck.
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Hi August friends! Nice to meet you! I'm Donna, I'm 45 and live in Chicago, got my port installed on Monday and my first of four TC infusions today. Six-weeks and one day after my Dmx with expanders. I'm so glad I decided to get the port. Even though the pain/recovery from the port insertion was more more than I expected, (don't freak out... it felt better by the next morning) It's so much more comfortable than having a needle in your arm for 4 hours.
I didn't do the cold cap, and my husband has bet me $4 that I will not lose my hair. (I did get it cut short a couple weeks ago just in case... also, it was a great excuse to try the pixie cut I always kinda wanted but was a sissy about committing to!) Found this amazing link about how to deal with hair loss, if it happens: hatsscarvesandmore.com/blogs/news/chemotherapy-hair-loss-to-shave-or-not-to-shave
As far as anti-nausea, I took two Dexamethasone 4 mg tablets yesterday and two more tomorrow and planning to take a Claritin tomorrow morning (even though they said I would only need to take it as needed... but hey, it's allergy season anyways) I also have Ondansetron for Nausea as needed after the Dexamethasone.
I drank nearly two liters of water with a generous splash of orange juice in it during the infusion. Everything went smooth and I'm still feeling 'normal' 7 hours later... well as normal as you can feel with a flashing robot nurse on your arm overnight (Neulasta). Fingers crossed.
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Santabar thanks so much for all the tips and encouragement. I start in two weeks and am petrified of what's to come. I am someone who usually hates to take meds, tried to stay away from various toxins, etc. So I am very interested in in alternate methods to assist. Was wonderingabout researching on my own, or it probably is worth it to spend more money(yikes!) On a naturopath. But they would have to know about cancer
I am planning to make sure to go walking daily. Thanks for the reminder there too.
In2 earth - glad you made it through that first one. Encouraging for me as I am very anxious about it.(isn't everyone) sounds like you even managed to take care of yourself a bit!
I do have a chemo class next week which I think will be very helpful. I am writing down questions.
Anything I should ask?
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Can anyone tell me how long the port implantation process took? I'm getting it on Monday. Thanks
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Hi All!
Tomorrow will be my first AC infusion - I'm all sorts of nervous/anxious. I've been reading all of the posts, which is helping - I just want to get it started already. This process is so drawn out - I was diagnosed in May, had surgery in June and now starting chemo tomorrow. I haven't had a port put in yet, but I believe that will happen in the next couple of weeks.
Thoughts and prayers for all of you!
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Ren08, glad to see another Her2+ on this thread. I was starting to think I was going to be the only one. We will probably have the same chemo.
Interesting that I’m getting chemo first and then surgery. I wonder what determines that decision.
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GoMama: Once they got me in the procedure room, it took about 45 minutes to an hour including all the med delivery and the prep. Then they kept me for an hour for observation because of the anesthesia.
Once that fancy cocktail of meds wore off it started to hurt a lot more than I thought it would. I took a leftover Norco that first night. Be very gentle with your self and take it easy that first night. I woke up feeling much better the next morning and almost 90% normal the evening of the next day. Very gentle neck stretching helped me. It's worth it when you actually go for the chemo, I promise.0 -
flowerkid -- buy the book "Life Over Cancer" by Dr, Keith Block, you will get a lot of info from that. I followed his way of doing things in terms of diet, supplements, exercise, & IVs-- and then I added fasting, hyperbaric oxygen and hyperthermia on my own. I had TNBC and it was in lymph nodes, so I wanted to hit it from all angles on round one.
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Got my port this morning and everything went well. Was thinking about you @Toadism. Hope yours went well too .
They told me it was called a POWER port, and I was thrilled. I figure it either gives me superpowers or I can charge small appliances. Just saying... I'm powerful
They put me out completely so there was no discomfort. Had a great nap and still no discomfort though I did take some ibuprofen. However, I will listen to the sage advice of @andshewas and take it easy tonight and in the morning.
@gomama - re: Port placement timeline, I was scheduled for 6 a.m. surgery so almost no wait time. They took me into surgery around 7 and they discharged me from surgery center around 8:30 or 9
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I am so for putting you out when you have port placement. I'm so glad I had anesthesia--after all of the ups and downs and terrifying feelings of being diagnosed with breast cancer and treatment--this was a piece of cake. I would have been too nervous, scared, everything. Same for the sentinel node biopsy--it was done at the same time of my lumpectomy so I had no idea what was going on. And that was so good for me.
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@Ezzie I was thinking of you as well. I am so glad things went well. I Had mine today and all the anxiety I had was unnecessary. They had me in a little “”twighlight” sleep. I was aware of the numbing injections and felt some tugging and pulling then about 40 minutes later I was finished. Stayed in recovery about an hour and then my sister took me home. Hubby is recovering from a double inguinal hernia repair. Between the two of us we make one whole person. 😂 No pain tonight but will also take it easy for tonight and tomorrow.
I had my visit with the oncologist surgeon yesterday and he was so pleased with the outcome. No lymph nodes involved and clear margins. However being a grade 3 chemo is necessary and beneficial
Next speed bump .... chemo
While at the hospital today I was thinking of those times I got a little down and out and feeling sorry for myself but I look around and there are people far worse off than myself there are young children, babies that haven’t lived their lives yet and have so much to overcome because of thishorrible disease. I saw a high school friend who was having a biopsy on his lungs because during s routine test they found numerous nodules and it was not looking good in perspective, yes I will have those days, but I am choosing to love each day and find my joy in all things
Praying for you all on here for recovery, peace and good health and strength.
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I met with MO yesterday and I have my treatment plan. I will be a chemo newbie with everyone here in August. After being told that my cancer is not acting typically and that it is a shit cancer (my father, husband, and myself appreciate his candor) in that it is too small to normally have infected all four of my sentinel nodes (three with my macromets and one with micromets) so he postulate did that it has been spitting out cancer to the lymph nodes for a while. His main concern Is that it is grade 3/3 (UK terms as he was originally trained there).
He then went on to discuss everything. How I was ER+ and how and where estrogen is made. Then he stated that my high PR+ was probably the thing that will save my life. Which is why my treatment plan looks like the following:
Zoladex injection every three months to put me into menopause likely this upcoming week (he did tell me dad and husband I might be a wee bit cranky 😀). I have to wait a week after the injection to receive my chemo
Three cycles of FEC (fluoruracil/epirubicin(otherwise know as adriamycin)/cyclophosphamide). One infusion every three weeks
Three cycles of docetaxal (taxotere)
He also wants me in an exercise clinical trial during chemo as I am already acting and am hoping to remain active during treatment.
Then the radiation will start after chemo and so will the tamoxifen until I get my ovaries removed and then I will be on AIs.
He would also like me to receive zolendronate when I start receiving my Tamoxifen.
Needless to say I am very nervous as I want to be able to complete this all yo increase my chances of survival.
Hugs and love to everyone going through this
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It takes about 30 mins, you will have medication so you are not aware of whats going on, feels no pain, but responds to commands, then you go to recovery room for a chest x/r to verify placement, back to your unit, go home about an hour later. I had mine placed 2 weeks ago, completely healed, was accessed Friday for first round chemo. I have been swimming also with water proof barrier. Marta
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It takes about 30 mins, you will have medication so you are not aware of whats going on, feels no pain, but responds to commands, then you go to recovery room for a chest x/r to verify placement, back to your unit, go home about an hour later. I had mine placed 2 weeks ago, completely healed, was accessed Friday for first round chemo. I have been swimming also with water proof barrier. Marta
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Hi ladies of August. I'm a couple of months ahead of you, started in June. I'm finishing up with weekly Taxol in the next couple of weeks. I'm HER-2 positive so I will continue with Herceptin for a year.
Here's some things that I have learned that might help.
It is hard to lose your hair. Once it starts coming out in clumps, it's time to go short. I cut mine down to about an inch and it was less traumatic (emotionally) when the rest came out. I use a bar shampoo Ethique which is a baby shampoo - good for hair and skin.
I got a wig, wore it once and never again. I wear slouchy hats that you can find cheap on Amazon. Also a sleep cap keeps your hair from getting all over your pillow (and possibly in your mouth - yuck) at night.
If you can't take something like Zofran (which can cause headaches) for nausea use ginger. You can get ginger tablets, chews, etc. Ginger ale also helps. So does chewing gum.
To sleep better on treatment nights when the steroids are on board, a combo of CBD oil and melatonin can work. Check with your doctor first though.
Saline gel is good for a bloody nose and helps moisturize the nasal passages.
Claritin helps bone pain if you have to have neulasta or neupogen shots for low WBC. Start taking it the day before the shots.
I kept the mouth sores at bay by using baking soda and a sensitive toothpaste when I brushed my teeth. I used a saltwater rinse every night and a water pick with a little bit of Peroxol (over the counter mouth sore rinse) in it every morning.
I won't lie and say I haven't had some low points. Going through this can mess with you emotionally. But having others going through it with me really kept me sane
I hope some of this helps!
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can't remember who wondered about why chemo before surgery: I am triple positive BC. Grade 3 4 cm tumor! So I am also having chemo before surgery. The oncologist said this will shrink the tumor and make surgery easier and more effective.
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Hi all!
I’m 34 and was diagnosed a few months ago. Had a lumpectomy in June and just started the first of 6 TC treatments on August 1.
The first treatment went well and I felt myself again after about 6 days. I did experience a lot of bone/joint pain from what I believe was the Neulasta injection. Has anyone else experienced this? I did Claritin before and after the treatment.
I am also using scalp cooling, specifically DigniCap. It was pretty uncomfortable for the entire 5 hours but I got through it! Any suggestions to ease the pain for this?
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