Starting Chemo in February 2016?
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Oh good, I'm glad the MRI is scheduled somewhat soon. ❤️
HausFrau, I hope treatment goes off well, and you don't get what your daughter's fighting. Your sweet red headed boy is so cute.
Deaconlady, glad everything looked good.
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and thank you everyone. Replies are sparse as I'm exhausted. Hausfrau love love love that photo and LTF hoping for a full recovery for you soon...wish I was closer.
Ditto asher
Love to you Fran
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Hi all,
Been lurking and wish y'all the best. Question, can anyone recommend a brand of eye drops that has worked for the eye tearing problem. I know it's not significant, but it is driving me insane. Thanks.
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asher - She's a French Brittany, a type of Spaniel and such a sweetheart. She loves to cuddle with me.
HausFrau, Piper - great pictures!
Preparing for Daredevil Season 2 by watching the finale from Season 1.
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I had my 6th Taxol treatment today. I AM HALF WAY TRHOUGH CHEMOTHERAPY!!!! I feel pretty good tonight. Last week I was very tired just about all week. Tonight I do not feel quite as lightheaded as I usually do but my hands are pretty shaky. I have lost more than half my hair. I have a wig but I have not worn it yet. I just wear a hat.
I want to run something by you ladies and ask for your opinion. About 3 weeks after my surgery I had an appointment with a RO. At that point no mention had been made of chemo. My surgeon had said prior to surgery that if margins and nodes were clean I would probably not need chemo. A couple of days before this appointment, I was given an appointment to see a MO. I was told to go talk to him and see what he had to say. My RO was the first appointment. She was very nice, answered all my questions , explained every thing, etc. I mentioned that I had an appointment with a MO. She said that if I had to do chemo, it would come before radiation. She then said that looking at my lab reports with a 7mm tumor , clean margins, and clean Sentinel nodes, she was pretty positive chemo would not be recommended. She went ahead and scheduled appointment for simulation for radiation. Then I went to talk to the MO. He recommended chemo because my mass was TN with aggressive score 3. We discussed, he answered all my questions, gave me info to read about Taxol and its SE , and sent me home make up my mind : chemo/no chemo. I decided to do chemo. At this point I had not seen my BS since surgery(just his PA) because he had been out of the country since right after my surgery. I had no complications following the surgery, no pain at all, healed fine .Well when I see to him for post op he tells me how surprised he is that they want to do chemo. He gives me the same reason as the RO. Of course now I am second guessing my decision to do chemo. I had to wait a whole week for my appointment with the MO. So when I walk in to see him, I dumped it all on his lap ,,,you said....., he said..., she said... He listened, restated the facts that my cancer was TN and on aggr know why ssive scale a 3. He also said that when my case came up in front of the board( oncology) everyone there agreed that this cancer warranted chemo. He said the only disagreement whether to do chemo or not was because of my age. I will be 75 in about 3 months. He said he then decided to meet me before making up his mind. My really feel that I made the right decision.
I was mad! I can deal with friends and other people who ask, " If you had ... ... ..., why do you have to do chemo?" But shouldn't both BS and RO know why chemo was recommended. I like my BS, he is very nice, he does great surgery . I would pick him again to do my surgery. Now the RO ... my first reaction was to drop her and go with someone else. Now that I have cooled off, I am not sure. I talked with a lady who had brain cancer and she was her RO. She did really well and she loved her. Do I ask to switch over to someone else or do I stay with her? Any thoughts ... reactions... from all you wise ladies out there. I probably need to make up my mind soon
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could say it Piper, I'm glad you'll get MRI Monday, the waiting is just too hard. Being unique is no fun in the cancer world. Maybe ask MO if 2nd opinion would be helpful? At some point? Hoping the MRI shows nothing to worry about. (((Hugs)))
Hausfrau, your boy is adorable and I'm sure your girl is too but steer clear for now, right?
dejabienassez, I'm just using generic brand Top Care eye drops and they are working fine. Good luck!
Nolagirl, hoping for best results for your sister Monday. Steroids are my friend right now too. I'm thinking this is better than round 1. PatO's was a lifetime ago, what an institution. What a crazy town. I remember sitting in the back seat of a taxi, probably 4am or so, going home with a giant Long Island Ice Tea sloshing around in my "go" cup, and the driver leaning around with a joint....another world indeed.
Praline, I feel for you, getting conflicting responses from members of your team. Your MO said your case was brought to the tumor board and they all agreed chemo was best route, only concerned about your age. MO must have thought you were strong enough to do it. TN is aggressive and that makes sense to me, thinking of others here we hear about. Perhaps RO and BS are not up to date on TN treatments? (unsettling thought) Could you ask MO about this...do they share info as a team, could they? It is not good for your confidence going forward to get conflicting advice. I feel my MO heads the team. What do others think? You are (I hope) finished with BS now. But will need radiation after chemo, so RO is important. Could you discuss with MO? Try not to stress, and feel great that you are halfway though!!
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Praline-our situation runs somewhat parallel. I was upset too; or rather, confused. After my team explaining and then getting on the same page, I armed myself with questions. My BS had a different recommendation after surgery than my MO. My RO will tell me on Monday about radiation, however, with my new issue to right breast the final decision may wait yet again. I do wonder if I was diagnosed at cancer centre first if I would have had chemo before mastectomy. Here's to being half way through! Cheers!
reflect- I am confident now of the two opinions re: how to proceed with me. There are also two other Drs and hometown and big city radiology team members that are familiar with my case. I heard two talking on phone Friday. They are clearly talking together about me properly. Forgot to mention, MO knows I'm anxious about steroid use. I lost weight again. She is upping my steroids by two days usage as doesn't like my chart of SEs and the number of nausea days. My husband and I talked and as much as the care here is supercalafragalisticexpialadocious, if my unique case develops into a more serious situation and my mortality is in question we will take some savings and go to cancer centres of America or even a well known and successful AIDS/cancer Dr in Barbados. I know a stage IV brain cancer patient who went. We can't spend a ton and aren't wealthy by any means but will price it out and see. With all the new warnings about how dangerous inflammatory breast cancer is, it baffles me how they still balk at it. Especially the young MOs. YouTube it. Education is key! I've read threads here as well and it's eye opening.
Love and light!
Hi MDP Liz and Nola. Sorry I haven't responded directly. ❌⭕️💗🎀 hi Deaconlady et al! Myra hope you are having a smashing time
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Praline, I have your exact same dx right down to the tumor size and TN. (I think we even had lumpx on the same week). My BS wasn't sure whether I'd have radiation or chemo first. My RO said chemo first. I met with all three on the same day. I finally asked, OK who is the head coach? = It's the MO. BS's know about surgery, RO's know about radiation ...MO's know about chemo/cancer. Listen to your "head coach" for all major decisions.
The Nccn guidelines say 5 mm/0 nodes is the cutoff - no chemo recommended. Between 6 mm and 1 cm - it *may* be warranted. From there, it's a mathematical formula almost - Grade, type (lobular, tubal, etc.), Ki67 score, etc. The more aggressive - even if tiny - the more inclined they are to recommend chemo. And then there are variations of what cocktail based on that info...
The caveat to that is those over the age of 70 - that chemo may not be the best idea depending on the general health (besides BC) of the patient.
Our only difference is that I am getting Taxotere/Cyclophosamide. (TC). Your cocktail is also listed as an option - I even asked my MO about the differences between cocktail choices for similar dx. He said some of it just has to do with preference, other with side effects vs pre-existing conditions, etc.
All that to say, it sounds like you got told the exact same thing I was - and I'm 49.
Hope that helps!
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chambo exactly! Well put.
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Elise06- I have had the neulasta shot in my stomach 3x. It's no biggie.
Piper- praying for no cancer.
All- I have finished up my dense dose AC treatment on Wednesday. Been a really nauseous and sleepy one. Started feeling a littlebetter last night.
So...my question for you lovely ladies is.... I start 12 weeks of Taxol on the 30 of March. Any input? Advice?
Thank you much! Prayers going up for all of you!
Elizabeth
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praline
Both my BS and Oncologist both said chemo and radiation because of it being triple negative. I was all for it. Since it is aggressive I don't want it back. I will do whatever I have to do if it means beating it.
Chemo number 3 went well. I have no side effects yet. Fitbit told me I had 11 hours and 33 mins of sleep last night. I go this afternoon for the neulasta shot. I'm sure the side effects will kick in tomorrow after the shot. One more Act treatment and then onto weekly tactol for 12 weeks
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blamons when do you start Taxol? I'm scheduled for April 15. Last AC is April 1st. Had my button deliver my Neulasta round 4-5pm today. We were watching The Martian loudly and I didn't even hear it beeping to start administration!
Sicko daughter hasn't thrown up since last night. She's eaten and kept down all her meds no fever. I avoid her and wore masks last night and this morning. She has mostly stayed in the basement. Urgent care didn't call with flu test. Strep due tomorrow.
I was told bc my tumor was triple negative chemo was not negotiable regardless of which surgery I elected to have or genetic results. Didn't matter if spread or not. Chemo was a must for - - - per my MO. And my tumor is stage I the only gray area I fell into was neoadjuvant chemo or surgery then chemo.
One more AC to go.....I have the blahs none of the energy I had with #2. Tired weakish feeling.
One more ball game to watch then bed. Only time I care about basketball ever 😁
Hope everyone is having a decent weekend
Hugs
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Shannon I am close to you with Taxol. Last AC April 5; Taxol start April 19. I am quite anxious about it. My MO upped my steroids. That's a far cry from me trying without them. Thinking of you. Glad your sickie daughter is much better.
As for me; my closest, second oldest sister of four of us, is coming today for two weeks. I'm so excited. I spent yesterday morning at Joseph rehearsal with my daughter. Emotional. The work ethic these community actors have is fantastic.
The rest of my time was spent researching. I get mad when I hear "stay off the intrnet" I think that's horrible advice. I think we know the difference between junk science or rogue sites and medical centre, oncology, patient experience sites.
Happy Sunday 💕Piper
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Eliz, thank you for the reassurance! I need to remember to just *breathe* sometimes!
Praline, the doctors need to be told to talk with each other. If the hospital system hasn't done it, then please take it upon yourself to insist on it! Mine all sat down to an hour long conference before testing was complete; and everyone was on the same page before any treatment began.
HausFrau, Piper, we're on a similar schedule. My last dose dense AC is tomorrow; first Taxol April 4 (along with Herceptin & Perjeta because of my HER2). I'm also scheduled for an echocardiogram this coming Thursday because of that whole low BP scare last week.
The nurses keep saying our SEs should be waaay less than they were on Doxorubicin! In fact, the only unusual thing I've heard about Taxol is that if you haven't already lost your facial/body hair, you should expect to now. Bummer about the eyebrows; but I'm ok with the free body wax!
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Piper- Hoping and 🙏 That you get good results from MRI tomorrow. I personally feel that we were given a "gift of the Internet", if you will. When my Mother was diagnosed 22 years ago, she did not have the information at her fingertips, literally! I completely agree...I am reading reputable sites, referencing precise clinical trials, and then discuss with my Drs. These are the same sites and clinical trials that the Oncologists reference. I have been praised by some, and had the "eyes rolled" look from others. All I can say is that I still have a brain and the ability to read and educate myself about my own body...and I'm not going to stop learning now.
Praline- I had the same issues...I met with 3 MOs, 1 RO and 1 BS that were ALL on different pages. My tumor was 3mm. BUT, TP (+++) and grade 3. Guidelines state no chemo for me...but had 1 of the MOs recommend TCH, the other two, no. But I could not be at peace, nor sleep at night, with this unless I had a "chemo cocktail". I ended up talking to one of the MOs that recommended no chemo, and emailed her the trial study that showed very positive results with T1a tumors, HER 2+ and Taxol/herceptin. All of that took 4 weeks. I was mad at first as well, but realized that there are very fewtrials that include T1a/b tumors...so recommendations can be all over the board.
Reflect- your experience in NOLA sounds familiar (except for the joint waiving Cabi)!
My sister should get results tomorrow...and so we wait...
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Happy to hear everyone is having a somewhat uneventful weekend. That's a good thing, yes?
Piper & Nola- you're very much on my heart as this week starts. ❤️
My DD and husband are sick. 🤒 Since I've spent most of the past two days unconscious, I haven't had much contact with them. So far so good. (Fingers crossed.) I've been having REALLY strange dreams, though🤔
Hope you all have a beautiful Sunday.
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thanks Nola. 😀
Question. I wasn't able to get into cancer centre dentist for bad tooth. They are only ones who may extract. Here's the deal. In November I had a tooth pulled bottom left. Same spot on right needs doing I just know it. The left almost went septic. Question is, it's Sunday and I'm now in terrible pain. Should I go to emerg? I don't know what they can do for my excruciating jaw pain. I'm at hospital at 9am tomorrow as well. Can't wait. Chemo Tuesday. Arghhhh!
Sorry to hear asher.
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Thanks Asher 💗
Piper- ugh...I actually had same thought today as my tooth was killing me this morning. But feeling better this afternoon as long as I don't chew on that side. If you have an infection, I would think ER would prescribe an antibiotic and refer you to dentist for tomorrow. Maybe your Dr. Tomorrow could get you in to Cancer Ctr. Dentist
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yes Nola they are getting me in to cancer centre but not right after chemo. I have an antibiotic on hold for something else. A general dds won't touch a chemo patient. I'm worried about sepsis too. Man oh man. I'm a tough girl but this is baaaad. Xo
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Piper- maybe a call into your MO on-call line? I didn't know about regular DDS not touching chemo patient :-(.
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pain killers and freezing gel worked. Will talk to hospital team tomorrow morn. Thanks again. 💕 thinking of you and your sister. X
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06Elise I have the Neulasta button each AC tx. It goes off about 27 hrs after my nurse attaches it to my belly. Much easier than arm. I can see it and easily monitor and remove it!
Didn't even realize yesterday it had gone off during a loud movie! Easy peasy I promise. When you remove it peel from the fat end toward the lights so you are not pulling the tiny catheter backwards.
I call it my Iron Man button.
any questions just ask. I've had 3 now. I hate these chemo blahs and add in a cold and it's worse.
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Piper - can't remember if you're on Neulasta - but it can cause jaw pain (it does for me) and sort of a loose tooth-tooth ache kind of feeling. I have to take Ibuprofen to calm it down when it spikes (around Days 9-15). Just a thought.
So my crazy hand itch seems to be staying away - plus one for icing gloves!
On the flipside, over the last two days, I've developed a more generalized rash on my chest, neck and lower part of the back of my scalp. So far it doesn't itch and kind of resembles a heat rash. (No actual "heat" here, so I am pretty sure that is not it). It doesn't look very pretty. I'm hoping it doesn't get too much worse or I'll be sporting turtle necks to work this week. What is it with me a rashes??
Good thoughts for all those who need them.
#gozags!
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hiya chambo
I have had the jaw pain on neupogen and chemo first time. It is much better now. This is definitely my tooth. It hurts just to touch. They had a quick gander. I hope maybe a temp filling would help. I need a strong medication for my spinal compression fracture but can't until my jaw is cleared. I'm at the point of having all my teeth pulled and getting dentures
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piper- dental pain is the worst!! I clench my teeth and it causes headaches, neck, and jaw pain. Hope it gets fixed soon
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Question. The past 3 days I have been aching.....mostly legs and hips. Chills now and then. Temp hovering around 99.9. I feel like I have a cold but I'm aching MORE than I normally would. I had the Neulasta shot on the 5th after my 2nd round. Didn't have hardly any bone pain until 3 days ago. So....a delayed reaction or just a cold? I have my blood drawn in 2 days and Round 3 on Thursday.
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Hausfrau - absolutely 100%!
Suzted- If in doubt go get it checked. Sounds like you have symptoms that can worsen. I would go to emerg or give a call to your MOs primary nurse
Piper
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Myra hope you had a nice weekend.
Nola thinking of you and your sister🙏🏻my closest sis is here for me for the next couple of weeks. It's wonderful!
Question. Anyone think lydacaine or some sort of pain/blocking patch is a good idea for compression fracture of spine? These T3 I've been on yet again, had already been on for years previously could really play havoc on my liver. I've already gone through 200 in a month as I also had to use for mouth, headache, along with back. I can kick them anytime without incident so no addiction fear.
LTF any better?? I'm worried about you.
I'm getting a Barbie's Army team together for relay for life. (My name is Barbara) my little fam is a huge part of that army. So many appointments today. Pre chemo bloods, etc. MRI (travel for), back for video conference with RO. Then there's my tooth. Antibiotics will be tried I reckon.
Thinking of you all! My Tuesday ladies, let's get our fighting hats on now for tomorrow.
*we will get to shirts. I have to get through cycle 3 and find out about my right breast.
Sharing a pic of my oh so strong and supportive loves...my heart.
Piper💕🎀💞
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Chambro- I have a rash too...under my jawline and ears...looks like acne, but hot to the touch and aches. I put a cold compress on it last night and took a benedryl. That helped. I looked it up and it looks like it can happen with a myriad of chemo cocktails.
Suzted- I would call and get checked out. Watch the fever...
Piper-thinking of you and "Barbie's Army team" today. (Precious family pic). We're here for you💕
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praline- congrats on being half way done with chemo! Chambo gave you great advice. My BC is aggressive grade 3, so chemo was the tx even before finding out my oncotype score of 27. And it's funny how hospitals differ in care... I haven't even met my ro yet! Don't even have one. My mo is my go to and I'm not scheduled to meet with my bs until next January for a follow up mammogram.
Piper- how are you doing today? Thinking about you:) The wig is adorable and so isn't the picture of your family!
Frances- I hope your dd is better soon and that you can keep dodging getting sick.
suzted- I'd definitely call your mo before that fever creeps up any further.
Dejabi- my eyes have been super sensitive. I bought all natural drops at whole foods that seem to help.
Chambo- what's up with the rash? Is it an allergic reaction? Or just a SE?
Hausfrau- sweet picture of your son! And congrats on only one more to go. I have two more to go and it seems that time is just crawling now. I hate chemo!
Nola- prayers for positive results for your sister.
I went skiing yesterday! This breast cancer patient, in the middle of chemo treatments went skiing! I didn't feel like I had cancer and actually forgot all about it! I skied for 2.5 hours straight. And I'm totally exhausted today but happy for a snow day today here in the northeast. Here I am with dh, oldest dd and my son. That's Mt Washington in the background.
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