August 2010...anyone starting chemo besides me?!
Comments
-
I guess because we moved here from elsewhere (not Philly) I don't have any connection to the Philly/Camden wherever hospital groups. I had my kids at the local hospital with no problem, and was never there for anything else. I don't like the sound of the walk in center that some one is talking about, but otherwise I am pretty sure they are mostly pretty close to the same all around. They are all playing the odds. If you compare say Taxol to Taxetore (sp) there are pros and cons to each, and it is easy to see why one dr pick one, and one picks the other. Bottom line, they are in the same family and do the same thing.
I am not quite as analytical as Lizzy, but my job too calls for research and analyzing.
I guess went off topic some. I never go to thebeach here in the summer, can't stand the shoobies and traffic. I guess we will miss the Sept season too, but the pool is still open, so it won't be that bad! And I haven't watched either of those shows, but if you enjoyed them, I am glad.
And the shot after chemo......this, according to everything I can find, is the one part that has no long term effects, only short term. With the chemo, we don't even know what some long term effects may be, because they didn't have people living 40+ years after, and now there are. Please don't forget to get a copy of your file of doses that you keep. I see a lot of us are not very old, and that means you may outlive your onc and your primary dr. and the next one is going to need to know!
0 -
Lisa - yes, chemo itself is a carcinogen, and we don't know the long term effects -- but look at Ann Jillian - she had it 25 years ago and she's going strong..... I like to think of those people when I think about the assault on my body.
I hope the neulasta shot has no long term effects. I really want to opt out during Taxol and will discuss that seriously with my doctor. I had my shot Tuesday - wednesday was so so but my legs really hurt tonight - I keep getting stabbing pains in my thighs and hips. I don't feel this is the chemo, but the shot.
I just don't feel like taking more tylenol - I know that sounds weird - but I just don't want any more "drugs" right now....Welcome Carrol - I hope you will be encouraged by the friendships on these boards. The whole insurance thing is a nightmare for sure. We have bills rolling in =- we're just not paying them. Not now. I don't know what else to do - right now we're living hand to mouth. I have confidence you'll be treated though and be treated effectively! It looks like you have a "good" diagnosis that hopefully won't need chemo?
0 -
CALAMTYKEL & Neulasta- I think I can comment on your SEs as I've had terrible side effects with Neulasta. I find FOR SURE that Neulasta is the worst of my entire reaction, the chemo drugs (I'm on TC) seem like the lesser of two evils. I have extensive bone pain, spine, ribs, pelvis, legs, shoulders and skull. And I totally get what you mean when you say you don't want to take the tylenol...I feel like a walking pharmacy and I'm tired of it.
Last infusion I had an incredible nurse (remember the good looking one???!) and he told me a story about Neulasta that convinced me of its worthiness. I was complaining about the pain from it and he said, "You're lucky that you're on Neulasta", I countered with "huh??" and he said, "Neulasta will save your life. Your white blood cells will be higher than ever before and you're not going to get any viruses etc. People don't take this seriously enough but Neulasta can prevent you from septecemia. So take it." Alrighty then. So Neulasta it is.
I have heard there are a variety of other drugs that can help with white blood cells that have less pain associated with them, but I've also heard that Neulasta is most effective. So I'm trying to remember that as I shoot myself with it. But by far it's the part of the treatment I dread the most. My onco prescribed Tylenol 3s to go with it for this last round. That helped immensely. She said, keep a low level of Tylenol 3s going throughout the 4-7 days of pain and she was right on the money, it helped a lot. I could function. First round? I was in the fetal position for large portions!
Anyway, that's been my experience with Neulasta, for what it's worth!
Lizzy- AWESOME on the scans. Over reactive residents are a nasty business.....
Rachel and LibraryLil- you're both going to be on my mind tomorrow, I'll keep you there all day and hope that LibraryLil's SEs are minimal and Rachel that your infusion is incident free. Hey, maybe you'll even get a hunky nurse?!
0 -
Lisaattheshore: Did you mean I was analytical?! I guess it is my mensa level television viewing that leads you to toss such accolades my way???!!!!!! Was it Jersey Shore that did it?!!!!! In all my 40 years I have never been called analytical but I'll take it! There is a first for everything!
Your FEARLESS Leader!
0 -
Li
zzy, Thanks for the warm fuzzies. Made it throw the 2nd chemo uneventfully, tired. I'm going in to work tomorrow as it will be an easy day. Just hot flushed and homicidal (I think from the little green pills prechemo)Mentioning Drs. that are jerks. When I was called back to redo my mammogram in July,The radiologist that did my ultrasound pretty much told me it was cancer. I went that day for a biopsy. The rad that performed the biopsy was so kind. Her nurse stayed by my side the entire time. I went for a lymphie biopsy and the nasty one was on duty. She was a total jerk and told me that since I had multifocal they would probably need to take the breast and I would have chemo. My daughter went with me and when I came out she knew I was upset and she wanted to go punch her. Anyway, I left, went home and had 2 strong "Firefly Teas" and a slice of carrot cake. When the radiologist called me with the results I let her have it about her manner and how I felt I was treated. She apologized and tried to say I felt this way because the news was bad. When I saw the BS I told him that I would never see this Rad again. My BS told me that this is the reason they go into radiology, they can't talk to people. He also said "They are giving out a lot of information over there".
Other than this my md experience has been good. My oncologist is so nice and easy on the eyes. He smiles and really listens.
Good luck to all going for chem this week.
0 -
No, I know what you mean about not wanting any drugs. That is my normal stance. And I think I a mentioned before, I am really afraid of needles. I just can't look at them. Anywhere. Not on TV, not in a magazine, not at all. It is a phobia. So the onc's office is being very good about having me in different areas than where all their equipment is, and where all the people are getting their shots and IV's etc. Actually, I cannot even go there without prior medication. And so cannot drive myself, not because of the chemo, but because of what I have taken to just be able to show up. I do think of the people I know who are long term survivors as well.
In the meantime, the onc (and I checked with my primary that this was ok, 'cause it did not sound right to me) said to take tylenol AND aleve together, per the package directions. I did take some, but not all the doses that I could have. I just thought......look what they give me in all those chemo bags--how bad can this be, I got the second opinion too.
Darn I can't find Carol, but welcome as well! We met all our deductibles because my husband had surgry earlier this year, actually had just gone back to work the day prior to my diagnosis. So any bill I get with a balance I just automatically resubmit (well, always did do that, sometime they pay more!) I went to a Gilda's club meetting where they referenced having money to assist bc patients, so you might check into that. I did not take down the information at the time, unfortunately. Remember if your treatment is at a hospital there is normaly an assistance plan where they reduce your bill based on your ability to pay (in NJ it is Charity Care), and many states have a catastrophic illness fund that you can apply to for assistance (NJ for sure does) . Other than that, send them $5 a month. Should keep you out of collections.
And isn't it just wrong that you have to spend energy worrying about that at all?
0 -
Lizzy who organized the list at the begining? Lizzy who collected the dates and treatments? Lizzy who I bet has a spreadsheet? And am I wrong or did you say you were a trader?
You can watch the static on the tv insted of the whales, won't change a thing. I myself watch trash daytime TV when I am home. Jerry Springer, Judy whoever, etc.
I checked the other time groups. They don't have lists. They don't know how many people are in the group. I counted a few, and we seem to be a bigger group than most, but of course since they have no list you can't tell how many lurkers that actually belong in the group there are, where as we probably have some who have not come out, but I bet there are some who PMd you and so are in the list even if they don't post. (ok a few have a list. Most do not)
0 -
Lisaattheshore: You got me!!!!! I guess I am analytical!!!! Whadda ya know?! I guess I learned something new....about myself today!!!! I am really more into marketing and sales though.
Goodnight-
Your FEARLESS Leader!
0 -
Well, Lizzy, you don't sell without knowing your product and your marke
It's not random!
It can be unconcious tho'
. But now you know, so use your powers for good not for evil.
And rest well!
diagnosis: 7/2/2010, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2-0 -
Hi guys, I just wanted to weigh in on the Neulasta. I had a horrible time with the Neulasta with my first treatment (worse SE than the chemo) and also developed a rash (allergic reaction). So, since I had an allergic reaction, they didn't give me the Neulasta this time. I went in the Thursday after my Friday treatment and my WBC had bottomed out. Basically they told me I had no immune system. So, they gave me Neupogen, which does the same thing, although it is short acting. They wanted to get me through until my body kicked back in. I went back today, another week gone by and my WBC went from 2.2 to 2.8 (normal is 8.3), so basically I am still an infection waiting to happen. Again I got Neupogen and told the doctor that next time around I wanted the Neulasta again, because I was very uncomfortable working and walking around unable to fight off even the simple cold. Because of the allergic reaction, however, I will probably get Neupogen every day for five days, but either way the injection is worth not worrying about getting sick. So, the alternative to Neulasta is illness. I say bring on the injection!
0 -
Thanks for the good wishes for tomorrows chemo---SWEENEY--I haven't seen any "hunky men" yet working there--perhaps tomorrow is the day!
IowaSue--My two cancers were not related just "bad luck" and I went to genetic counsellor and although I am being tested for BRAC1 and BRAC2, they don't believe that I have the gene as my family history is very cancer-free. I guess I hit the motherload in one year. Rad Hyst took care of the complete cancer--no chemo or rads required---caught very early. Even though had yearly checks--tumour grew high up on cervix...just my luck!
0 -
Here is how my breast cancer played out. Early spring I kept feeling a sensation under my armpit but in the bra area and one night laying in bed on my side I just was feeling around wonder what was bugging me there thinking the tag on my bra or something was causing an irritation, I felt 3 small lumps on the outside lower part of me breast. I couldn't feel them if I was doing a traditional breast exam I had to be on my side before they could be felt. Well I started goggling and read sometimes you may be lumpy around monthly and most of the time it is not cancer so I kinda put it out of my mind I had my youngest daughters graduation coming up in May and was very preoccupied with planning that.
After graduation one day it dawned on me oh yeah there were those lumps, I felt and still there hmmmm I call a random Dr.(female) that I had never been to because I am health I really didn't have a family Dr.
June 10th Family Dr. for lumps
June 11th mammo and ultra sound
June 14th Biopsy
June 18th told it was IDC 3 tumors size 5mm 5mm 8mm plus multi focal specks
June 21st off to surgeon
June 23rd I decided bmx
June 29th 1st onc appointment ( I didn't care for him so I ask for a different one)
July 1st bmx I took 1 wk. off work for this
July 23rd 2 onc Dr. Amy Krie ....love her !!! treatment TC xs 6 herceptin for a year possible rads. after TC reconstruction tram flap spring ( March )at Mayo clinic
July 29th echo
Aug. 3rd brain mri ( no cancer there Yeah!!!)
Aug. 4th port placement
Aug. 19th 1st treatment TCH
Aug.20 Neulasta shot
Aug .27th Herceptin treatment
this is where I am at and have had very minimal se after 1st treatment
I have not missed any work since the bmx except for appointments then i miss half a day. Work gives me a reason to get out of bed in the morning. I do the social work at the local nursing home, I really enjoy the elderly.
0 -
Hi,
Back for round 2 (AC) tomorrow.Wish me luck! Hoping to be SE fee for my son's first day of kindergarten next week:-) My 3 yo asked when her hair was going to come out, so hard for them to understand:-(
Carolyn
0 -
I just wanted to weigh in on the Neulasta, too. My experience was a horrible amount of pain the first go-round - just constant pain in my back and legs. Took Advil every 4 hours as directed, and it didn't touch it. But 2nd treatment, pain was much less. I had some aching in my legs and back, but I didn't even need to take anything for it.
I'm glad I'm getting it, though, as I go in to "tech week" (aka "hell week") for Jerry Springer, the Opera on Sunday, and it means many long nights in close proximity to many people. Glad my wbc counts are high!
0 -
I just want to thank you guys for your comments on the neulasta. I have been up for a couple of hours - just achy jabby bone pains and have been seriously wondering why Im' getting this injection. But I see from what some of your doctors are saying that the good outweighs the evil. It's just such an odd feeling - the jabbing pains that come and my legs feel hot all over.
lisa - funny thing about the shot. This last time I was sitting in the chair, gripping the seat, eyes scrinched shut, waiting for the needle stick and the nurse was already putting the bandaid on. I never felt it! LOL!! She jiggled the skin while she did it so I didn't even know. We both laughed about it. I dont' mind the shot itself, it's the after effects.
0 -
sweeney: So it's normal to have neulasta pain 4-7 days after the shot? I was worried since I'm still achy in my legs and my ribs are sensitive - I had the shot Tuesday. My nurse told me it usually lasts 24 hours but maybe I misunderstood and she meant it begins within 24 hours.0
-
Iowasue, I feel you on not having a dr! (Not truley funny, but I got a giggle from your description). I only have a dr because I have allergies that are bad enough to required rx, so I finally just picked one who was not too touchy feely, didn't seem to want to send me to a lot of other drs, and just wanted to see me 3 or 4 times year just so he could legally write the rxs. He never minded if I stretched the 1x yearly bloodwork to 18 months. I know, nice standards I have. But I did tell him that was why I kept him, and he wasn't offended, so maybe that makes us a team. I never saw him for sickness (till now) in the 6 years or so that I have used him.
On that Neulasta, I suspect that 'everyone is different' is the new normal. The nurse at the onc who gave me the shot made it sound like the pain was going to last the whole 8 weeks of the treatment which was what mae me so sceptical about taking tylenol+aleve at the max dose for 8 weeks, but my primary said it should 'normally' be a 24-48 hr thing. I did not think to ask on which day it would start.I go today for the second one. Last chemo (the first one) I had on a Thurs, shot on Fri, and they told me any side effects I got would sart on Sunday, so I set off FRiday night with my daughter to visit a college that she had been invited to. (another display of brilliance) Fri in hotel, Sat on a walking tour of campus.
I did take a couple tylenols, just thinking I would stay ahead of anything creeping up. I was seriously exhausted by the time we were coming home, but had also been up most of 3 nights, wether se from steriod, nerves about 1st treatment, idk. I think I felt worse on Monday and Tues, which is 3 or 4 days later. But not that horrible. Kind of like maybe I am getting a sickness/flu. One of my coworkers did tell me I was good for nothing on Monday afternoon, but since I had finished my Monday work while up all night and on Sunday when I thought I wasn't going to be able to do anything at all and so had nothing else to do.......it didn't matter. Going to try for same this week end, minus the trip. We still have to work Monday because payrolls have to go out regardless of holidays, but we are trying for a 10am finish time.....
Good weekend to all!
0 -
Thanks for hearing me sweeney- I was already disappointed with "we can just wait awhile, it could be due to hormones" and now this! Silly Dr gotta find me a new one. Burn check today and am hoping to join the chemo crowd. I have 3 choices TAC, AC+T, and TC. The first two with standard oncs and the last with integrative onc, which is more me but I am totally confused... Oh well, I'll figure it out. Take care.0
-
Calamtykel- I have Neulasta pain for almost 8 days. It lasts a long time for me. And I know it's Neulasta pain b/c it targets my bones specifically. I feel like my spine is readjusting it's alignment, my ribs are wiggly, my hips and pelvis feel out of alignment and legs are achy and hurting. My shoulders feel like they have a heavy weight on them and my head feels like a vice grip is compressing the base of it. Kind of like a brain stem headache. Overall I hate Neulasta. BUT it's keeping me out of hospital and saving me from all of the germs and viruses my beautiful kids are bringing home from daycamp and school. Also someone asked about how long it takes to feel the side effects, for me I start feeling them (lightly) within 6 hrs. By 24 hrs out it's hit me hard.
Lisasinglem- When you actually do your show can you take a picture in costume and show us??? I'd love to see you in your getup!!:)
Adey- I heard you loud and clear. NOBODY should have to put up with those little soul-killing moments.:) And then if they do, I feel like you're allowed to take out your stupid stick and hit anyone you want.:)
Liz- when do you get to see your real onco again to give you the good news about your skull films?
Rachel- keep an eye out for hunky nurses. So much more fun than watching poison drip into your veins!;)
Carol- Welcome. This is the best thread, filled with incredible people.
Libraylil- hope your SEs are minimal today. Hang in there.
0 -
I'm a little relieved to know that Sweeney - I mean I'm sorry that you have such pain with it, but at least I know that I'm within the realm of normalcy...... this round has been kind of bad for me neulasta wise (I have energy - just don' t know what to do with it because my legs and hips hurt!) I thought it was supposed to get better each time. I just broke down and took two tylenol - the aggravation from the pain is getting me down emotionally and mentally, so hopefully this will help. I'm afraid my lyme may be back - that's always in the back of my mind; and it always did hit me in the legs and joints. But this is a little different - it's like jabbing pains.
I was up at 4 am and did the dishes and cleaned the kitchen. I just wasn't tired. No idea what's going on there.....it's like I'm not sleepy..... going to at least try to get some things accomplished today.
0 -
I forgot all about putting my timelines in. Here they are...
April 30th- found lump at my cousin's bridal shower. It was located high up on my pectoral muscle. If it had been lower I never would have felt it.
Three days later- was in with my family med doc, whom I love. He said, "not cancer, don't worry. But just to put your mind at ease let's do a mammo..."
May 15th- Mammo and ultrasound. Stern faced onco radiologist comes in and tells me it's cancerous, but they'll have to do a biopsy to confirm. I'm shattered. Leave sobbing. No one is with me b/c this wasn't supposed to be anything.
May 17th- biopsy and MRI. Results back in 24 hrs. Yes, it's cancer. But it's small and doesn't YET show any progression to lymph nodes. Lumpectomy needed.
May 18th- I tell my larger family and friends. Very hard.
May 30th(I think!)- meet BS, he's great. Both my husband and I really like and trust him. Others tell me he's "the best in the city".
June 8th- surgery. But only b/c the surgeon managed to squeeze me in really quickly. His words, "I like you. I'm going to trade time with someone else to get you in as fast as humanly possible..." I love him more if that's possible.
June 15th (I think)- results back from surgery. No node involvement. Clean margins. Tumour was 1.5 cm. BS says, "If you have to have breast cancer, you just won the breast cancer lottery."
Spend a few weeks recovering from surgery. Waiting for final pathology re HER2 status. Do Oncotype testing, comes back with a score of 20. Choose to have chemo.
July 31st- chemo begins.
So all in all there was some waiting, but I felt like I was moved through the system very quickly and efficiently. I've also had great docs all along. My onco is super talented, she's a little rough on the communication side sometimes, but she's a scientist so I give her some leeway.
0 -
ALL- Sorry. One more question- I've yet to have any bone scans or other MRIs to look for other issues. How many of you have had that? Do you think I haven't b/c I didn't have node involvement? I plan to ask my onco this next week.0
-
Hi, on the neulasta - my nurse told me to take Claritin starting the day after the shot and continuing for a few days. My shot seemed to have gone OK as long as I kept up with the tylenol proactively and took the claritin - but then I seem to be the only one developing neuropathy after the first treatment so maybe I'm on some other end of some spectrum somewhere!0
-
Sweeny, I had a
PET prior to surgery, which came back clean except for what we already knew about. I know some drs order it after chemo, but I don't know the %s on that. My dr has his own machine, which is one reason I picked him (I believe he will use it as often as possible. hate the rads, but want cancer sneaking up less). I also read somewere on the boards about a PEM scan, which might be the newest, but perhaps limited availability?
0 -
Omaz (and the greater nuelasta isues). I take claritin daily, so maybe that is helping me. Actually, I regularly take enough antihistamines that I am the only person in the chemo place that is awake.
I do think taking the tylenol or whatever your dr recomends before it starts is better than trying to catch up to it after it starts.
I can't say I have nueropathy, but I am finding I am a bit clumsy......bit trippy and droppy. No pain tho' . Oh yeah, and my spelling is really suffering....
Sweeny, I am in the 'choice' to have chemo group too. I thought better 4 treatments now just to make sure than 6 or 8 or whatever in a few years. It's a hard choice, but I think the right one.
0 -
Sweeney - My onc told me that if I had had lymph node involvement, he would have done a CT scan, but since I didn't, he didn't think it was necessary.
And I will definitely post pictures of my Jerry Springer get-ups. (I have 3: a "normal" audience member, a creepy nurse, and a demon in hell)
0 -
On the neulasta: It amazes me the different things we are told. My nurse said the onset of symptoms would be quick if I was going to get them; the evening after my shot. I had the shot Wed and so far, nothing, so I'm hoping I don't get them. I took Zyrtec (I guess that's what they use here instead of Claritin) and Advil proactively. She said do the zyrtec 2xday for 5 days. Also, I don't think this matters at all, but she gave me my shot in my stomach instead of my arm. She gave me the choice of arm or stomach, and just as a lark since I've never had a shot in my stomach, I chose that. Didn't hurt a bit (lots of fat there!)
Sweeney: I had CT scan, MRI and PET scans before chemo. But they kept seeing weird stuff on each test they did and doing further tests, which is why I had so many (I think). They were all ok thankfully.
Good luck to all having treatments today. Everybody try to enjoy the Labor Day weekend. I am looking forward to sitting back with a huge bowl of popcorn and enjoying the start of college football (yes, I love football, especially my Auburn Tigers, War Eagle (our cheer for the uninitiated). Glad the storm has passed in NC.
0 -
GOOD DAY CHEMO-SABIS!!!!!!!!
Adey: definitely post later about your "burn" visit. I want to know how you are doing and when "we" are starting TAC or CAT a ACT or CTA or some other acronym!!! I don't remember the names either but you and I are going to be on the same series of letters!!!!!!
Sweeney: I spoke to my onc yesterday and I think he is probably going to whip up a cocktail and then I will start next Thursday. I think if there is anything more to discuss about the head xray he will call me. BTW, the one time I broke down crying was when a radiologist did the exact same thing to me. It is stunning to have that happen and mine delivered the news in a horrifyingly anesthetized manner! This person may as well have said death is imminent! Also you are most likely omitted from the scan tour b/c of your lack of node involvement.
Lisasinglemom: I meant to tell you that "Springer - the Opera" sounds like a wildly entertaining show! I did not realize that Springer is filmed in Stamford CT as is the new Showtime series called "The Big C" which is a moderately humorous look at cancer that is or will be airing on Showtime. I hope you do very well this weekend. Best of luck.
Calamtykel: Omaz, and others, are correct in so many having such good results with taking Claritin before and after the Neulasta shot. I am sorry you are having so much difficulty with it. I hope Claritin helps for you and the SE's on the next shot are less. I am not sure who said it but the benefits of Neulasta far outweigh the SE's as any type of infection can quickly turn fatal while on chemo.
Lisaattheshore: I don't blame you for electing chemo. I think it was the prudent choice. You are absolutely correct in that you most likely avoided 6 or 8 txs in a few years. Not an easy decision but I am sure I would have done the same thing had it not been forced on me! For the record, on the August member list, every person on it posted on this thread. The only person that simply PM'd me but never posted was Milnertm. Not everyone posts but they like to read and feel like they are a part of the group. If you put us all in an auditorium, like any other large group, some people are more vociferous than others. For me it was important to create a "group" atmosphere without obligations of posting and people feeling if they did not post that they were not a part of this group. I never looked at any other threads when I started this and I have a seen a few where every date is listed with a persons name and their type of chemo and # of txs etc... but it all looks so disorganized to me!!!! In any case, we all seem pretty happy here so I guess something is working!!!!!
Your FEARLESS Leader!
0 -
My breast surgeon would not order any scans. I wanted them right away! but she kept saying "I'm not worried" - I guess based on what she has seen with the size tumor and the grade that I had, even though she suspected ln involvement, she felt it best to wait for the oncologlist. She did say "I have women who walk in and I know right away that I want full body scans." Personally I wish that I'd had the scans earlier because I spent a LOT of time worrying -about my ovaries, colon, etc., etc. I was freaked out. I had a CT of abdomen, chest and pelvis and a bone scan and they were all clean, as was my bloodwork for tumor markers. I didn't have an oncotype done but they did have a number for risk of recurrance and that was 11%; it was done somehow on the tumor. I was told that is borderline very low.
While I was waiting for my CT scan I met a lady who had the same surgeon as me. She said that she had scans right away, then had chemo and now was back for more scans since her tumor marker bloodwork was still high.
Many surgeons will do the scans just for peace of mind of the patient. I wish mine had, but I did have them done eventually. I am hoping I will not need any more. A nurse friend of mine said I will have more scans done once chemo is done! I hope not! It seems like a LOT of radiation to be exposed to if my first scans were clean and now I'm on chemo......
0 -
Lisa - I heard on the radio about a place that does CT scans but it's a special machine where you're only exposed to half the radiation. They are the only place that has this particular machine - it was somewhere in NJ. I am wondering if I need more scans if I can see if they will accept my insurance. Radiation freaks me out. Once it's in the body, it never really leaves and that just scares me. I've already had more than I wished to!
0
