Starting chemo January 2018
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Well my nuestla (spelled wrong ik) went for without hitch and I took it off with no issues... So today was my day I COMPLETELY buzzed my hair.. I was back and forth about it trying to hold onto any reason not but I wanted to have control over when it came out not not cancer so I ALONE stood in the bathroom and buzzed my beautiful thick long hair🤬🤬💪 not sure how I feel right this minute alittle sad I guess... Now I’m waiting to see what if any SE’s are headed my way.. I’m feeling okay get flushed alittle easy. Strangely enough since my infusion I’m starving eating a lot a snack got a lot of errands ran today... Blessed thank you god I hope all you ladies are doing as well as can be expectedly my thoughts and prayers as alway
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My port must have pinched a tiny nerve somewhere because if I turn a certain way or accidentally lean on it or have pressure on it (cross body bag); it hurts. Then again, I'm that 5%er. I can't imagine, though, not having it if only for the ease of tx. I was told that the chemo drugs are so toxic that if they spill out of an iv then they call hazmat to clean it up.
There are PCC lines which are along the arm (I think). It is an alternative to a port but requires weekly maintenance (not sure what). I think they are always dangling and that is why they sell PIC line covers to hide them. Just a consideration as an alternative to the port.
Being in the 3rd world without care for patient comfort, I get nothing prior to port being accessed. When I asked about lidocaine I was told that it would take at least an hour before it was effective and when I asked for cold spray, I swear she sprayed so much towards my face that I inhaled at least half of it. It really doesn't hurt to have accessed. Then again, will all the poking and prodding of by body, it no longer phases me.
Tomorrow I have EC number 3 and am going to ask to put the 4th at two weeks and add at least three doses of the T.
Hair is still shedding. Any time I run a comb near it a ton comes out. If I can only hold on it to for a few months more --- pretty please!!!!
For tomorrow's infusion I am going to bring my oil dosed medical marijuana. My husband will take me there in the am and make sure that I am ok for the infusion then he has to leave and won't be back to pick me up until end of the day. And I've just realized I have no friends to accompany me. So, I'll sit there, plugged into the wall (can't move) and since I'm in single actual private room, I figure I might as well use my happy drops and color.
Has anyone discussed radiation yet with MO? I've been plowing through the next step and see that proton therapy exists in some centers. Will anyone be doing this? Not sure how it works on operated breast cancer (especially when lymph nodes were removed).
It will be another grilled of my MO tomorrow. I think she likes my challenges ... well, maybe...
xx
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I don't have a port. I wasn't offered one, and didn't ask. I had two infusions so far, both in my lower arm. For one, they stuck the needle in a vein in the inside of my arm, for the second, on the outside. Both infusions were less than 2 hours long, and they are three weeks apart. They did such a good job (I'm in Toronto, at the Princess Margaret Hospital), you couldn't even see the needle mark the next day. I'm very thin, and I guess my veins are more visible, but I really think that the nurses were just very skilled. I got nasty bruises before, after doing blood work, and I attributed that to the nurse's lack of skill. It's not right and it's not normal. I got this one nurse at my family clinic who seems to struggle with everything (as an aside, she was the one to remove my IUD, and it took her 20 minutes and two speculums to find the strings, and I'll spare you the details). She's the one who always bruises me after taking blood. I used to be more polite, but ever since I got diagnosed with cancer, I avoid her and ask for someone else. So in conclusion, I wonder if the bruise, @Deaelle,had to do more with the nurse than with your veins.
@WorriedMe77 - you have a lot of balls, girl! Good for you for taking charge of your hair!!! I'm glad you started the chemo and decided to stay in this group! I personally like to hear from everybody.
@Amelia, good luck tomorrow! I usually listen to podcasts throughout the infusion. I save the good, less boring ones for the day. I like to listen to fiction from the New Yorker. It's all I can do, since they ice my fingers and toes, and I can't read because I can't flip the pages. My husband goes with me, but I'm not the chatty kind, and I just do my own thing, and he works, so it's like being alone in a way.
I am meeting a radiation oncologist on Wednesday (Valentine's day
) We'll see what he has to say. To those with infusions coming up this week - best of luck! And lots of hugs and good vibes to everybody else!
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Hi Everyone, thank you for all the kind comments on my picture of my sisters and my head shaving party. For me, it was the best way and if it’s helped anyone, I’m so happy.
So, has anyone tried fasting before chemo? How long and how were your results? Chemo number 2 of 4 scheduled for tomorrow.
So far, I just can’t face icing the hands and feet. I’m cold all the time anyway, so it sounds torturous. How’s it working for people
Love this group. Thank you for sharing everything. It helps so much!
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Hi, Amelia01, I have used Larissa in the past before cancer and I worked great. I had super long eyelashes. In face I haven’t used it in almost 4 months and they are still very long. I haven’t lost eyelashes yet but I think my brows are thinning? Anyone else lost either
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Hi @krose53. I iced both times (the hospital provided the ice packs) and it wasn't bad at all. I only iced during the taxotere, the other drug didn't require it. They gave me a blanket, but the chemo room was warm anyway. I wasn't cold at all (and I'm also cold most of the time). If anything, it's borig because you can't use your hands.
Good luck tomorrow!!!
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Worriedme77: You brave soul, just getting on with the buzz cut so quickly. I dragged my feet til I was getting handfuls of hair - still, that was only 12 day after my first treatment. Such a bummer. Those who hang on to their hair longer are lucky indeed! Re eating: I've heard the steroids we take day before, day off, day after (I assume that is standard!) can make some people super hungry so that may be what is behind that for you.
Amelia01: I hope being in the 3rd world, you aren't missing too many comforts. Can you bring your own to make your treatments more pleasant/tolerable? I don't get to meet my RO until very near my last treatment, which is in May. So, waiting, waiting on that piece of info. GOOD LUCK tomorrow! Enjoy your pot haze if you get one.
I have tried some CBD capsules, and also (one time) an edible "fortified" choc for sleeping at night a few times, but I find I don't like the 'hangover' haze I have the next day. Haha, Hazmat indeed! I have heard that my second series is especially bad for toxicity, so quite likely true.BTW, I don't know what 'PCC' lines are. Roxy13 - Interesting what you say about the bruising and the nurse. Could certainly be the case. I am still waiting to hear when the insertion will be - just hope it is time enough to be there for my next infusion, which is this Friday. Keep us posted on the RADS info. And sorry to hear about the IUD story - sounds nasty!
Krose53 - I don't enjoy the icing one bit! But, so far no neuropathy so I am going to persist as I figure I will really kick myself if I ended up with that and could have done something to prevent it.
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Take Claritin! It’s the Neulasta! Hope you feel better!!
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Hi fellow fighters, I have my next infusion Tuesday the 13. starting to get a little anxious but not worried like the first time. Good luck to everybody facing treatments this week. Will be praying for you all.
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My 3rd (of four) rounds is this Friday, and I'm getting nervous. The flu hit me hard this round, and I'm still feeling fatigued. The first round, I felt mostly like myself for the second and third weeks after infusion, but I'm still not myself, 17 days out from round 2! I know it's the combo of flue fatigue and chemo fatigue, but ugh, it hasn't been easy to deal with.
I'll get through it, just like I've gotten through the rest of this stuff, but I just needed to write down how very hard this has been. Stay away from germs, friends! Glad to hear so many of you are doing so well.
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Round 3 - check box!
Almost had to postpone due to low neutrophils (who knew??? Ran all around in last 5 days very energetically!!).
I’ve won a shot (or three) of Zarzio. I refused the 21 day Neulasta and pulled out chemistry 101 with MO.
LKinKC - good luck for tomorrow!!! No. 2 was a breeze!
Nap time 😴
Xx
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Hello, ladies!
I was just reading posts and someone had a word "steroids' in her post! ( sorry, i said someone, as i quickly relogged into my account and went to take my steroids( 2nd chemo tomorrow) - anyways thanks for reminding!!! i almost forgot to take the pills this morning, and was out on the road for 10 min for my 1,5 hour drive to install the port. Thank goodness i was reminded then too. we returned to the house to pick up the pills from the cupboard.
Boy, i have decided the port installation was so far the most invasive procedure ( for me), even the surgery wasn't so bad.
hugs to all!
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LKinKC - where are you from? im getting my 2nd chemo on Tuesday too. im in Canana.
Okkate75- one day at a time!
WorriedMe77 - good for you buzzin off your hair by yourself! i stretched the process in three days: half a head, then the other half, then all. It's breezy up there:))) enjoying my scarfs. I also found that i need to have my little toque(hat) nearby as my head gets cold-i put it on, and then a few minutes later it gets hot, so i have to take the hat off. my temperature is fluctuating a lot these days. possibly hot flushes are starting to kick in due to Lupron injections( trying to preserve my ovaries).
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LKinKC and Oleysa - good luck tomorrow to you both! YOU WILL DO GREAT!!
Oleysa - I think i mentioned something the other day about the steroids supposedly making some people really hungry! Boy, long drive to get the port. Were you awake for the port procedure or do they give you a sedative or something like that?
Okkate75 - It's tough when something else layers on top of the expected post treatment stuff. I had that with the IBS and it took me some days to bounce back. Take it slow and easy - lots of Netflix or something for the next few days so you are ready for Friday! Take it slow and easy there. My next treatment is Friday too (#2 of 6).
I visited a friend in the hospital today with stage 4 ovarian, who is in with a gut infection: C. Difficile - pretty contagious, but I felt I had to see her as it looks like she will soon be palliative - but I gowned and gloved up and washed and washed after I was done. Hopefully I am fine, but I am a bit worried.
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Hi Ladies-
Second infusion of AC tomorrow. Since this is my second time around, I buzzed my hair like 3 weeks ago, and it still isn't falling out! This is odd because last time, I was completely bald by this time. Not complaining! It's just weird.
Also having the port placed in the morning. Not looking forward to having it, but I am looking forward to speedier treatment days without an hour or two to find the IV specialist team to start my IV in my one good arm, which has had four previous rounds of chemo, as well as IV antibiotics.
Anyhow- good luck to the rest of you with treatment this week! You can do it!
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Hello Everyone,
I have been reading posts and attempted to post yesterday to give and update and send best wishes to everyone. Well apparently I forgot to hit submit. 😒.
Our group has grown. The support is amazing.
Each week I am learning my body. I spent the weekend preparing family meals for my round 2 next week. It felt good to do something for my family.
I decided before each round we would do a family activity the weekend before. My teenagers (14, 17) are doing better. I found the more they know about my appointments, diet, medicine, etc, the better. They can go online and get access to the wrong information or get information from me to help filter and understand what they found on thier own. Since the time my daughter asked if you have cancer and your mom died of cancer won't I get it too, I knew we as a family had to be open.
Kids want to help and don't know how. They help set schedules for how they get to and from activities when I have appointments. They like to evaluate what I pack for lunch to go to work. Lol. I am like I have been planning your meals now they check mine. I let them know how Awesome they are, and mom is on top of this.
In true mom fashion I let them know chores, school, church, and activities do not stop. We will never have placed on us more than what we can handle and I will still be checking grades and handing out punishments if needed.😋
Wishing everyone the best. Remember to rest, hydrate, and take care of you.
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This is great advice, @insideout2!
Speaking of which, I would like to get this group's advice on a matter that's been bugging me for a while.
This is the background: both my mother and her sister had bc (interestingly, I tested negative for the BRCA 1 and 2). My mother died in 2005, her sister is alive and doing well. For this reason, I've been doing mammograms since I was 39, at my doctor's suggestion. They've been normal until 2017. At the beginning, I used to go every year. Since the mammograms were normal, my doctor told me I could go every other year, and that's what I've done. So my last normal mammogram was in 2015, and I skipped 2016. Well, we all know what happened in 2017.
The whole time since my diagnosis, I've been wondering what would have been the situation if I had a mammogram in 2016. It may not have picked anything up, or it might have picked up a much smaller tumour in which case, who knows, I might have gotten away with no chemo, and . the odds of recurrence might have been lower. I don't know... The thing is, when I met with my family doctor to arrange for the referrals to the breast surgeon when I started the process, we looked at the mammogram results from prior years, and I saw the notes in the 2015 mammo that said: "very dense breast tissue, recommend returning next year". Or something like that. Clearly, they wanted me to go every year, while my doctor led me to believe that it's ok to skip a year (and stupidly, I agreed).
So I told some friends the story, and they thought I should change family doctors. One recommended her doctor, which she finds very competent (and this friend of mine is very picky). I'm leaning towards moving, and not just because of this. There were some other things that didn't sit well with me with this doctor. For example, she diagnosed depression, but didn't refer me to a therapist or gave me a prescription. It's only after my cancer diagnosis that she gave me something. Then again... Her office is close to my house, and I've been with her for over 10 years (in good health, so I didn't need her much). My husband thought I shouldn't bother, especially since I'll be seeing specialists, but I don't know....
Would like to hear your thoughts!
Hope everyone is doing well!
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Roxy13- I'd say be proactive and listen to your gut! it's your health and your life, and if you are not happy with your doctor - it's good time to change and move on! You is the person who matters the most!
The book I'm reading " Love, medicine and miracles" by Bernie S. Siegel, M.D. teaches that patients who take their life in their own hands have better outcomes in recovery. Good luck!
Insideout2 - I totally agree: involve kids as much as possible. My 2y.o. is my big helper: she helped me to do the sponge bath when couldn't take a shower after surgery and now after port installation. She puts moisturizer on my body,and oil on my incisions(to reduce scars' appearance). She know's that " mommy's boobies sick" , but doesn't know why for sure. We didn't tell her be big bad C word, but i'm sure she is listening hard and trying to understand. So we talk in terms that are simple and easy to digest:)
Deaelle - for the port they offered me the sedative, which I turned down. I wish I didn't! I was all tense and worried that the local freezing will wear off before the procedure is done,lol!:)))Lesson learned: if the offer a drug to reduce whatever side effects might be - take it!!!
And happy to report: my 2nd round of chemo is complete. half way there!:)
Hugs to all of you! we got this!
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Hi All - I have round 4 of dose dense AC tomorrow. I would be lying if I told you I didn't feel a bit of dread anticipating the bad days that normally follow an AC infusion, but I am happy to be moving on to Taxol (I think).
For all of you having chemo this week, be strong. We are doing this one step at a time.
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Gigicommon-congrats on completing your rounds.
Roxy13- I agree with Olesya follow your gut. You may find another doctor near you that you feel comfortable with. If you feel you have a good relationship with the doctor you could share your concern and evaluate thier reaction.
Olesya- I loved reading about your 2 year old. It's amazing how kids adapt. Sometimes better than adults.
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Hello everyone,
I recently updated my dx with my HER2 status. As most of us I view other threads to gain knowledge and share support.
I would like to share what I posted on the TN thread below.
Everyone would say you have to fight this, but no one said how. I know fighting represents something different to each person, but now looking back over the past month I realized I am fighting. For me it is in getting up everyday, taking care of my well being, researching my dx, staying ahead of insurance billing, continuing to be involved in family activities, church, and every little thing from washing my face to going to work counts towards my fight. And I choose to fight.
So don't question your strength, question your ability to endure pain because when you feel down and at your lowest, then manage to place your feet on the floor to stand. You have already declared you are a fighter. Even when you have tears in your eyes and feel low, but manage to move you're fighting. Yes and when we lash out at loved ones. We are fighting. I think sometimes anger is an expression of frustration because we are enduring so much. And when I am fighting to win I get frustrated. All this to say I realized I have been fighting this whole time and now realized how.
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@Insideout2 Thank you for that wisdom! I agree--no one said how to fight, and no one explains why we're "brave" when we are just doing what our docs say. As I prep for round three after a fairly brutal round two, I think the bravery is in showing up tomorrow to take the steroids and then heading in on Friday, knowing I can't really know what to expect. I'm learning a lot, even if I don't totally want to learn all this. We are doing this.
@Roxy13 I think I'd switch docs. After losing trust, I'm not sure I could go back. I get the convenience thing, but I need to trust my doctor. I'm so sorry you have to go through that second guessing stuff.
I finally feel like myself after several weeks of bone crushing fatigue from the flu. I'm going to enjoy these two days before going in again, and I'm going to be grateful to have earned the knowledge that I can get through feeling that bad and see myself as myself again. Good luck this week, everyone!
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Roxie, I think it's important to have trust and have confidence in your doctor and it sounds like you have doubts. I say, follow your instincts.
But, look at our similarities! New AMA guidelines said every other year for Mamms if you are not at risk. Had clean Mammo every year including 2015, so independently skipped 2016. Felt lump in 2017 and scheduled my biennial Mammo to find out I had cancer. I say SHAME on the idiot AMA for (incorrectly) informing women they could have biennial exams, especially since the same thing happened to you! My brand new 70-yo internist feels the same way and told me ALL his ladies have yearly Mamms! He's pushy, but I like and respect him and feel he has my best interests at heart.
On another note, my MO has decided that my Aetna PPO is too slow in paying and that IF I want to continue treatment then I must pay up front. One of his personnel actually told me that if I chose not to pay then I should probably finish my treatment elsewhere. This is happening exactly half way through my treatment. I feel like it's a shakedown and I am furious. This week alone I've put $1250 on my credit card and have chemo next week. None of my other providers have concerns. A supervisor for Aetna called his office to insist that my insurance be honored to no avail. Apparently, his office called Aetna for claim approval, asked when payments would begin, and was told by some peon 'when money became available'. This started the avalanche.
Anyway, thank you readers for reading my vent.
Best of luck dear ladies in your treatments and post-recovery! This WILL soon be behind us!
Laura
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Laura, I'm sorry you have to deal with your MO this way. Does the office within the state of Texas that licenses doctors to practice, or other consumer affairs office, that can address what your MO is demanding? This appears to be highly unethical. I can understand that doctors and their offices sometimes receive only a fraction of the costs submitted for insurance reimbursement, but that's their choice if they want to contract with one or another insurance company. When your personal strength permits, check with your state agencies.
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Hi Roxy13,
Sounds like we have a lot in common. My mom died from breast cancer and I started annual mammograms at age 39. I too tested negative for BRCA 1&2. I also have dense fibrocystic breasts and had many call backs after screening mammograms. My clinic automatically send reminder letters every year and I was never told to skip a year. This year I was 4 months overdue due to work and travel. I had the usual call back and assumed it would be nothing. But there was a small mass this time. I wonder if I had the mammogram on schedule back in June if the tumor wouldhave been found.
If you have other issues with your doctor i agree it would be a good idea to find a new one.
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Thank you, all for weighing in. I will switch doctors. I just can't get over this and yes, I lost trust.
And I don't get this mammogram guidance. In Canada, at least, they recommend that low risk women start having them at 50. But so many of us get diagnosed in our 40s, even with no family history, so why not start earlier? Not to mention many women get bc in their 30 (including two of my co-workers, both clear now 10 years later btw!) I just don't trust the system anymore. This year, at my physical, I even asked for the Pap (which I was more than happy to skip in the past). Of course it wasn't offered, because the guidance now says it needs to be done every three years.
Someone told me I should speak to women about the benefits of having mammograms - I guess many doubt that they are useful, but I don't see myself being breast cancer lady trying to persuade strangers to go ......
On a happier note, I met with the radiation oncologist today and turns out I don't need radiation!
Thanks again! And take care of yourselves, ladies!0 -
hello all! I had my 3rd AC today. 1more to go before I switch to Taxol. I've noticed from this time and the last time, that I seem to get really emotional the night of chemo. I'm not sure if it's messing with my hormones, or if I start to not feel well and the gravity of the situation is hitting me, but I will cry at the drop of a hat. Really annoying because I'm usually such a strong person. Plus, to add insult to injury, when I cry, my eyelashes are falling out and getting in my eyes. Sheesh! Feeling yucky and tired and I have a night of getting up every half hour to hour to pee due to the steroid from today. No fun.
PeachyJeanne, thank you for the detailed info about Taxol. It helped a lot to prepare me for what is to come.
WorriedMe, your buzzed head looks great! I know it was a relief for me once it was done and over with and I didn't have to think about it anymore.
Roxy13, I think you are making the right decision. I would switch too. Trust is so important to have. You need to feel like your doctor has your back.
Laura, I'm so sorry you have to deal with this from your MO. This is definitely something that no one should have to worry about. We have enough on our plates and that is the last thing you should have to worry about. This is why we have insurance. That should be between your MO and the insurance company. I hope this gets resolved quickly for you.
InsideOut, I Love your post about fighting and being brave. You are so right. Every little thing we do to carry on and live our lives adds up to another victory. Things that may seem trivial to others not in this fight are milestones for us and we are FIGHTERS!
Hope everyone has a happy Valentine's Day and has a good rest of the week
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OKKate- Glad to hear you are feeling better.
Lmurphy- Check to see if grants are available. Your MO's office should have some information to share on this. It is concerning Aetna's interaction with the office. Check your claims and EOB filed with Aetna. This can impact your out of pocket expenses. You may find all your claims for your appointments this year are not current. Also some doctor's offices only check balances at the beginning of the month, impacting our deductible. I hope everything works out, we have enough to stress about.
Roxy13- You should be comfortable with your doctors. You would be a good person to speak on the topic because of your experience.
My energy level was so high the past few days, I was like when will I crash. The answer yesterday around 4pm. I came placed everyone's Valentine's gift on the table, got ready for bed, and was out by 7:30pm.
I woke up twice once to exchange gift with my husband. The other to ask the kids did they eat. I don't remember Thier answer, but know they did. This morning my kitchen is a mess.
It's okay because they will clean it up before leaving this morning. I will be waking them up early to make sure. 😋😄
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Roxy13 - congrats about not needing radiation. wonderful new! I know I am late to the table with comments about your doctor, but I wanted to add that I think trust and a good open relationship are so necessary to good health care. I had a great family doc from my late 20 to 39 - when she decided to retire her practice at the ripe old age of 40! I was devastated and then in family doc hell for the next 10 years or so. Went through 2 docs in 5 years, then had a different one for another 5 years who I never felt totally comfortable with but kept telling myself it was no big deal, and she was close and convenient... Until she put on a high dose of beta blockers for an emerging blood pressure issue when all I really needed was a low dose diuretic! I was in grad school at the time and the brain fog was ridiculous! I left after that and finally found a doc with great social skills and thorough care. What a relief!
She also told me about 5 years ago that the standard of care in Canada for mammos had been revised to every 2 years, even though the clinic where I had them done continued to send me annual reminders. So, I revised to every 2nd year and of course did not go last year. I ask myself if, had I gone, my cancer would have been caught before it became Stage 3, which is what I now face. But, at the time it seemed reasonable and I didn't question this change, so I can't beat myself or my doc up about it. In your case, sounds like there may be other issues in the relationship and care that you question, and in the end that is what matters more than whether or not it was an oversight by your doc, seems to me. Re finding another one, I found that quite a challenge, and spent ages pouring over the "doctors accepting new patients" page on the Alberta College of Physicians and Surgeons, looking at their training (when/where) and trying to get a sense of their age - I didn't want someone fresh out of med school! I expect Ontario has similar listings. I finally found someone trained in South Africa who was in her late 30s/ early 40s and setting up a new practice in Calgary.
Laura - so sorry to hear about your financial issues. What a crappy thing to have to deal with along with just handling treatment! Hope that gets sorted soon, one way or the other!
Oleysa - good advice about the sedatives. I will take anything they offer! I still don't have a date though and my next chemo is tomorrow.... so obviously missed it for this round, which is a bummer! Your 2-yr sounds like quite the sweetie!
Okkate - are we on the same schedule? You have your next round of chemo tomorrow too?
Insideout2: You are so right! I feel like I am on a toggle board - ever trying to rebalance and accommodate to the next thing that comes up so I don't fall off in a heap. It is exhausting! But it is how I am fighting I think; trying to keep my spirits up, but feel the feelings so they will pass. This last week I have felt quite good, not emotional and clear-headed, with decent energy and getting some work done. Then 2 nights ago I woke in the night for 3 hours and couldn't get back to sleep. Clearly, my anxiety about tomorrow was turning up that way! And today, at a meditation/yoga class I attend that the psychosocial oncology resources unit runs, the facilatator read a poem and I just started crying. Whoa - did not expect that! But, it is all part of this. It is called "Tea Ceremony" and the last few lines are: This is your new life / Drink it in.
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Daelle-I like the quote
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