August 2010...anyone starting chemo besides me?!
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Good luck today to Wherria, Lizzy, and Omaz!
Gingerbrew and Beau Sorry your treatments got cancelled but it is good that they were so cautious about cold symptoms and liver functioning. We get all geared up for having treatment on certain days and being done by a certain date that it must be disappointing to have the schedule altered. Hopefully you will both be feeling better by next Monday so you can move forward with treatment.
On the hair issue - I buzzed mine at home (had husband do it) and I did still have the short hairs coming out in the shower for the next couple of days but then it stopped and now I am not noticing much shedding at all. At this point it is not exactly patchy, just sort of sparse all over. So I haven't felt the need to shave down to the scalp.
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texas - yes. I started seeing him about three years ago when my son, husband and I both could not get rid of our lyme disease.
He's the only one who helped us get rid of it completely using natural methods. Our bloodwork has been totally clear and we're symptom free. We've had some recurrances since then with tick bites but he always handles them. Unfortunately, cancer is such a much bigger monster............:(
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Adey: I wouldn't mind putting them on here, but I don't know how to insert a picture. Send me your email address and I'll send the pics to you. My email is ginakay101@yahoo.com.
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Done!
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Good Morning Chemosabes!!!! I am reporting LIVE from the chemo waiting area!!!!!
Sadly, again today I will not be seeing my onc. I will be seeing his nurse. The last time I saw him was August 10 or almost 2 months ago. I did not want to tell you all but I have a lump forming under my TE on the affected and it seems to be growing. I wanted to see my onc because he has man hands. His nurse is like 4'11 and 80 lbs!!! She can barely reach on top of the table never mind press hard enough to feel this lump. I don't understand why I never get to see my onc. I complained the last time about not being able to see him and they said I would. I understand things come up but all the time!? Frustration.
Ginger: it is really good that they put you on hold. The last time, 55 days ago, when I saw my onc he did drive home the idea that even the slightest infection can turn very into a life threatening event. Just go ahead and be grateful they stopped you before chemo debilitated you much further and you could have wound up in a much worse position. Just be happy they stopped you. I would be happy they decided not to treat. There is always next week!!! I know, if you could only get your hands on my neck (smile!!!).
Adey: All shaved up!!!! Doesn't it feeling liberating!??! I am really happy with my results. Does anyone know what kind of brush we can use to take care of these wigs. I got a super soft brush and strands are coming out in the brush. I think this is what they told me to avoid. In any case, any advice is appreciated. The wig was almost $500 so this should NOT be happening.
Ladyinbama: I will be looking forward to the pic. I emailed you my email. Thanks so much for offering. I guess I will just let the little whiskers go down the drain as they please! I have a septic system though and I was worried about how all this hair, pre and post buzzing is affecting my system! Oh well...perhaps I will find out at the next cleaning!!!!
Alright, girls. I am hopeful someone will be calling me in soon as I am still in the waiting room for an 11 appointment. This also means they have to thaw my med and I will be waiting some more. I wish this was a slightly more expeditious process as you all know how I feel about being in *that* room. Oh well... alas there is nothign I can do
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Lizzy: Be sure to get that place checked out. It could be scar tissue or something from the TE. My PS always feels me up when I go in because weird stuff can show up that is a problem with the TE. I didn't get your email address? Did you send it to this forum or to my email? Hang in there girl and here's hoping all goes well in your treatment today.
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Lizzy,
Is that the side where they TE was leaking? Maybe it's a fluid collection behind the TE? Did they tell you when you started how often you would see the onc? I see mine before each chemo. I think you're justified in throwing a fit, especially since you have something you are concerned about. That's a long time to go without seeing your onc; I'd see if they're charging you for an MD visit as well. Could they get you in to see the PS or breast surgeon for peace of mind? Sorry you have to deal with this!
As for hair, mine is right down to the scalp. I had my sister buzz it as close as possible and then I went over it with an electric razor. (I did use a regular razor on the back the first time but then was too worried I'd have some embarrassing freak accident;-) I sort of have male pattern baldness on the sides, but other spots are still growing. I don't know if Taxol will take care of those. Some of the little hairs feel sore, almost like splinters sometimes so that's why I shave it.
Carolyn
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Hello all! I haven't been here for a few days because my brother and his wife were visiting from out of town. So, I finally caught up on everything.
Hair - I had mine buzzed right after I started chemo, and once it really started coming out in clumps and I looked like a mangy dog, I shaved with a razor down to the skin. TIPS: My brother, who has shaved his head a few times, told me this, and I found it to work well. 1) Use shaving cream and a new razor 2) Shave, the first time, with the grain of the hair - so that strokes are going the way the hair is growing. This gets most of the hair out. 3) Shave, the second time, against the grain of the hair - so that the strokes are going the opposite way the hair is growing. This gets you down to a smooth skin. 4) Have someone you love check your work. You don't want a big hairy spot on the back of your head. (Or maybe you do...)
COLDS - I went in to my tx with the very start of a cold 3 weeks ago. The NP told me "people on chemo get colds, too." I only had a slight sore throat at the time, but I got my tx. And it was horrible. Between getting the chemo and the cold, I was completely miserable for several days. I had to miss 1 1/2 shows of Jerry Springer. I go in for my next tx this week, and I am finally back on track. I did have a slight fever at some point and called the onc. He said to try Advil to get my fever down first, then to call back in 2 hours if it wasn't better. The fever did come down, so I didn't go on any antibiotics.
I hope everyone feels better. This is the time of year I guess. I will be asking about a flu shot when I go in on Thursday.
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Ladyinbama: I just pm'd you my email. Thanks so much as I am looking forward to receiving the pics. I would think it is scar tissue but it keeps growing. This is the backbone of my concern.
Ckptry: It is not on the (potential) leaking side. It is on the side where I had cancer previously. I am supposed to see him with every visit. This is a teaching hospital and he is a professor as well as my oncologist. I totally respect his academic commitments and the fact that he elected oncology as his profession. I just need to see him once in a while and this now, with this lump growing, is one of those times. They said he might be here this afternoon and perhaps he can come in and see me. I hate to be a needy jerk b/c, quite frankly, his practice nurse is excellent but, as I stated, she is quite slight! I really need someone who has the strength to press through the TE to feel this thing. Funny-before bc NEVER DID a self exam and now I am doing them! Go figure!
On the hair affair, I am just like you in that I am riddled with trepidation I might get a big cut and have to go to the ER, get an infection, have my chemo schedule messed up and end up a mess! I want to go to the scalp. I am actually enjoying the process of "starting over" with hair and having 100% new growth. I know we get cuts but we never start over. I am looking forward to what comes out!!!
Thanks for everything, girls. Have a nice day, be good to yourselves, don't let anything stress you and I hope everyone GETS OVER THEIR COLDS!!!!! Drink a lot of OJ women and get that vitamin C!
Here is a little nutrition info on where to score some extra protein. Most of it is obvious but a few were a surprise! I took this from a chemocare website, as follows:Because protein is an important component of good nutrition, this section gives tips on increasing foods like cheese (calcium also), ice cream (calcium also), milk (calcium also), eggs, peanut butter and others that can help you get the protein your diet needs during chemotherapy
This is Lizzy reporting live from chemo for all my super chemosabes!!
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Lizzy- I also seem my oncologist more frequently... I see him 2 weeks after the chemo and then when i am actually getting it done he pops in to see how everything is going in my life. he is a great dr. i know he has other patients and i dont expec him to spend the 3 1/2 hrs in there with me but its nice that he comes in at least once. On a slow day i'll see him 2 or even 3 times (when my sister in law showed up he came in quite a few to see how i was doing emotionally- or maybe to gossip lol)
I thought i saw english teacher on the stage IV board but i may be mistaken...
I updated my pic to a pic my son took of me (i helped him aim though)
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Lizzy - that is inexcusable --you should be seen to have this evaulated just for peace of mind! It could be cellulitis or scar tissue, but you need someone more than a nurse to tell you so! can you call your breast surgeon and get in there??
Cold seems to be leaving my nose area, but I drank cold water before and now I've been coughing like crazy! I have a wheezing sound now in my upper chest - in the bronchial area from coughing. UGH! I'm not coughing frequently but it sounds so strange! It started with the cold water. I just tried steam and I think it may be helping.
Well, starting this week, now my oncologist is requiring a full CBC one week after chemo for all her patients! That means no more finger sticks - they have to do an actual "draw". This really sucks because they can't use my arm because of the vein and phlebitis still healing so they have to use the port which REALLY hurts!
So it's one more thing to endure every week after chemo and I think it stinks. I guess she wants liver and kidney counts watched more closely or something. I asked the nurse if I just had the tests two weeks ago do I really need another one now? She seemed like she was unhappy with the rule too....but it's the "new" rule...... 0 -
Texas: great pic!!!! You look happy beyond words! I know you all see your onc and I never see my onc. I have not seen him in 2 months and, quite frankly, I think that is deplorable. I am going to ask to see another onc if he does another no-show today. By the time my next appointment comes around it will be 3 months since I have seen an oncologist.
Calamtykel: I totally agree I should see him and, at the very least, more frequently. I am going to check with my insurance company to see if they are billing for onc appts because I am making co-payments when I arrive. I am a little pissed about this. It could be anything and certainly I need the opinion of someone other than the nurse. My BS is also in this Yale collective breast oncology department and she is on only 2 days. I will try to get an appointment with her in the next few weeks. I am also going to tell her I never see this guy and I want another doctor.
I have a question about the cold: what number tx are you on and how long have you had a cold? Just wondering. I am getting a bit of the coughing and I am also worried because I have the propensity to get bronchitis. I get it approximately once every 3 years. I blame that largely on the fact that people at my job, which you all have heard me complain before (!), use up all the sick time by the 3rd quarter and my job is ultra-strict about attendance so they have no choice but to come in sick.
I do get weekly bloodwork but it was only platelets. I asked them to start doing glucose and thyroid as well. Do you have Emla at home? Can't you use that before bloodwork? That is a shame. I either did not know or failed to remember you had phlebitis in your arm. Sorry to hear that, Kel. That sux. I also know it is probably inconvenient to go get the liver and kidney checked but it just might be a good idea. Just think, an earlier mammogram catching this BEAST could have saved you a lot of time and trouble so perhaps getting the liver and kidney checked is really not a bad idea. If something is going on it is probably just as well that you catch it as soon as possible.
Oh girls....better times, they are a comin'! I have to say, though, I am so very grateful for this group because at least I know 99% of you (I am the 1%) see your onc each time so it helps me a lot to know what to expect. I think this group has been so wonderful and supportive. It is not just the thread but the caliber of people here. It is such a nice experience so I thank you all for making it a special place.
Don't forget to smile at yourself in the mirror...it works!
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Lisaattheshore: someone started an oophrectomy (sp) on September 30th! I just saw it in active topics and I wanted to let you know.
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Lisasinglem: I am glad you are feeling better. It easily must take our bodies twice as much energy, and thereby out of us, to fight even the slightest cold. I think you totally made the right call on missing work, albeit for only 1 1/2 shows. I know it hurts when you are committed to something like acting which really requires you to be "always on." That is a difficult job to have when you are in a position of being sick under normal circumstances, never mind having chemo as well. Also thanks for the info on shaving my head. I definitely do not want a big patch of hair hanging off the back of my head! I am ok with the baldy. Like it takes so much less time to shower and get ready...easy! This entire situation might have made a GI Jane out of me!
Everyone: I just saw my onc! Emergency averted! I think he is correct when he says it seems like it is probably scar tissue. Nervous Nelly does have it on the right side as well but to a much lesser extent! I felt something on the right but it is no where near as pronounced as the left. In any case, I was very, very relieved to hear that he thought it was scar tissue! YEAH! It just makes you feel better, ya know? It is comforting to hear that from your onc.
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Completed infusion 3, TCH without mishap - yay!
My onc stopped by the infusion chair to see how I was doing and asked about the neuropathy (which is actually called neurotoxicity from the taxotere, at least at the beginning). I hadn't seen him for a while and it was nice to catch up. Now for SE management 103.
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Omaz - Are you having neuropathy? I am, and now am taking even more drugs to deal with that. They are definitely helping my feet, but now I wake up feeling "hung over" (my onc's words, not mine) every day. :-( Here's to hoping for very minimal se's this week! I have TCH # 4 on Thursday.
Everyone - I just realized that the Lifetime movie "Living Proof" is playing on On Demand for Comcast. I assume it is because it is breast cancer month. But it is a movie (starring Harry Connick Jr.) about the doctor who discovered Herceptin and the first trials of Herceptin. It is definitely a tv-movie with a lot of over-the-top acting, but it was really interesting, and I found myself being even more grateful to Dr. Slaman, who I realize is saving my life right now. The only thing that really bothered me about the movie was how they kept putting women into headscarves, to show that they were having chemo, but you could almost always see the hair underneath them. (I notice these things now. :-)
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Lizzy glad you finally got to see him! Also glad he feel like its scar tissue, every new bump on our/in our bodies we are gonna think is the big C and its nice to hear reassuring words!
About the cold- i am 2 weeks past my 3rd tx... i had this cold for about a week or so
Lisasinglem- i am gonna see if living proof is scheduled to play on lifetime this mo (i dont have on demand)
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hahaha i hae netflix and i just put living proof at the top, i mailed off movies today so i should get it by thur! anyhow the hahahah was more like an evil scientist laugh muah ah ah lol
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Lizzy, that is good news. All this stuff is so scary, and the places our minds take us....As for your onc, glad you saw him but you need to advocate to see him more regularly, even if he is an academic etc. My onc is also an academic and clinical head of the bc center at Dana Farber, but she sees her patients before every other treatment alternating with her nurse practicioner. That works pretty well. She is also accessible by email, which is great.
OK, people I need your help with my problem of the week. I had an allergic reaction during my TC infusion #2, then this week on day 12 I developed hives all over my head, neck, face and hands. My eyelids swelled up so much that I burst capillaries and look as though I have shiners. They started me back on steroids to treat the hives. I am also congested and have bronchospasm, all allergic. I have never had allergies before this treatment. Seems I might have an allergic reaction to the already not beloved wig, or maybe to the "hat hair" I just got this weekend (a baseball cap with a fringe of synthetic hair attached). Have any of you heard of anything like this?
It seems to me that I once read someone's posting about developing asthma on taxotere, or did I make that up. I am hoping to see an allergist before next weeks' treatment! Yikes!
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Hi Ladies, I had tx 3 TCH last Thur. and must say it is true the se are cumulative for me it has been 3 days of fatigue, ended up going to work about a half hour late each day because it was so hard to get my but out of bed. The other se that was a little worse this time was the bone pain, wondering if anyone takes anything that works for that, may be from the neulasta ? IDK after the 1st one I didn't have any pain, 2nd time some and this time plenty.
Shaving my head, I did it to myself ( I am a cosmetologist) I used the clippers with # 1 attachment and put a towel over the sink and counter tilted over and shaved from the neck towards the top, I used the attachment because I didn't want to irritate my scalp so I left just a little (after it was falling out a great deal) I did't want anyone one to see me without hair and still very few have, you wouldn't believe how long it was before hubby saw my bald head.
As far as sex goes I might be able to have it someday if my monthly ever stops, I swear I have had it for a month now. I do see my onc. each time I have TCH and I said thought it was suppose to stop and here I am with the never ending flo, geezzzz all she said is it will.
On a wonderful positive note, it was another beautiful fall day in Iowa 78 and sunny 2 days in a row and it does make a soul feel good!!! It is suppose to stay this way until Mon. !! YAY!! Camping this weekend, and its trick or treating at the campground, last year they had a 1000 of the lil cuties, I know my lil grandsons will be there.
Chip up and smile girls we are getting closer to being done with treatments. ((BIG HUG))
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iowasue - are you taking claritin or zyrtec once each day for neulasta? That has seemed to help me a lot so far. Also, I start taking tylenol 325 the day after the shot and taper off.
elizabeth - taxotere can cause an allergic reaction. I don't know about the synthetic hair.
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Elizabeth27: sorry I did not respond sooner. I got 3 hours sleep the night before chemo and I really crashed out after doing a little grocery shopping last night probably larger because I had to fight off some "wig induced" unnecessary attention from some joker in the store! Aggravation and then he was waiting in front of the store for me...I felt like saying "it is fake, these are fake, get lost." This wig is causing me problems but not the kind you are having so on to my next point!
It think you might be having a combination of things. One of my wigs cost $500 and, to be honest, it feels better on my head than does the less expensive one; even with bc there is no reprieve to the old adage 'you pay for what you get!' I think the head, neck and even hands, if you were touching the hair on the hat etc..., and if what happened on your head, neck and hands all coincided to use of the new hat w/hair, those symptoms could be related to the synthetic hat w/hair. Some of that synthetic hair is made of not-so-innocuous material.
The capillaries around your eyes is scary. I know taxotere played around with my vision and made it blurry which scared me. Depending on your timeline of when these showed up, and if some of it was after that hat hair, stop using the hat hair and, like Omaz mentioned, Zyrtect or Claritin has seemed to help a lot of us in ways that we are not sure about but I have not had Neulasta pain and allergic reactions. I also had no allergies before and I don't know but I just finished tx #2 yesterday and who knows what I will be saying by mid-November!!!! Best of luck and come back when you know/find out more as it helps all of us.
IowaSue: After years of having a 3 day, no pain cycle, I was complaining I am on my cycle like Lance Armstrong now! My nurse told me it will happen again! I had it for about 10 days after tx #1.
As for your shaving advice, thank for the info on shaving. I appreciate it. I think I am going to go to #1 this week.
It sounds like a lovely weekend. 1000+ kids for treats??? Where will you all sleep as you will need to be able to store the 100+ bags of candy!!!! I hope you have a fab weekend. CT weather has been rainy and cold but it was long overdue. I sometimes don't even make it through my local news as I get tired of hearing how many people were shot in New Haven, how many Yale kids were mugged and now some New Haven cops tasered a Yale student in a nightclub this weekend and someone filmed it with their phone. The battle has just begun over police brutality. For this reason I don't even usually make it to the weather! I am going to have to start watching the Hartford news!
Good day to all of you and I hope it is lovely!
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Ladies -- have a question. I continue to have strange cold symptoms. First, it started Sunday morning. Had a rip roaring drippy mess of a head cold Sunday and Monday. MUCH better Tuesday but when I woke up Tuesday AM I had lots of crap that seemed to be in my upper trachea and bronchials to cough out. I coughed most of yesterday because it just absolutely refused to loosen - I could hear it rattle and squeak when I exhaled, etc.
I ran out and got some Mucinex. That seemed to help and I could no longer feel or hear the rattling or wheezy sounds. But then when I went to go to bed last night,every time I lay down I had difficulty breathing. I guess it was like asthma - sort of dryness. I tossed and turned - I had the vaporizer on, etc. I found whenever I took the mucinex, it sort of opened things up. If I sat up and coughed and coughed something up, things were a little better. I finally soaked in a hot tub at 4 am and then I was able to lie down and breathe easily.
I don't have a fever or persistent cough but there is still a little mucus hanging around in my nose and chest, but no more rattling like yesterday, just sort of a tightness when I breathe if that makes sense. I know kids (and I guess adults) can wheeze with a cold.... Should I be worried about pneumonia just three days after the onset of a cold? Things seem better today than yesterday.....but I'm not sure what to do. My daughter, son and husband all have this cold too so I don't think it's pneumonia. I'm not exhausted and like I said, there is no fever - yesterday they did my bloodwork, but all this has happened since yesterday. Since my nose is still a little stuffy, I know the cold isn't totally gone, but it's just weird symptom to have. I'm not prone to bronchitis or lung problems so this is all new to me.
I'm not sure what to do. The weather's crappy and I really don't want to run to the oncologlist and sit in that waiting room for two hours.......should I see what today brings and give a call later? Caffeine also seems to help open it up......................
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Calamtykel - keep an eye on fever during the day, rest, fluids. If don't feel better would suggest help. Maybe an inhaler - bronchodilator, just to get through this?0
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Calamtykel: I don't mean to scare you but just yesterday my NP spoke with me about them wanting to watch the pooling of fluid in the lungs and I don't know if she meant chemo patients at large or just myself and the kind I am on. She gave me this information after I explained I am getting the weird, dry cough and I *do* have the propensity for bronchitis. I get it about once every 3 years.
If I were you, I would definitely do the following: call the oncs office and explain, keep a journal of temps and try to remember how long this has been going on as preamble in the journal and then, should the onc think you need some more attention and want to see you, simply request if you could go to a mediquick/ER setting where you will only have to wait once and can quickly get a chest xray to examine your lungs immediately. I know it is raining and raw but it is imperative you bundle up and get some attention. Have you been on antibiotics at all? Also, if you go to CVS or somewhere to get a paper mask to protect yourself from encountering any other germs while you are out, don't hesitate. You really need to protect yourself, especially if the doc agrees that the ER is the place to go, from further exposure.
I am very concerned about you and will be sending you positive vibes and best wishes for immediate treatment of this. Please don't hesitate, however, and I am being a bit dramatic but this is because they really drove it into me yesterday to quickly discuss and seek treatment for any lung related issues.Best of luck and please keep us posted.
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I agree with Lizzy - hope you feel better soon!0
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I called the doctor's office - they toyed with antibiotics but since I don't even have a dry cough anymore and it all seems to be "dried up" just tight, they said to wait and see; since I just got this cold Sunday, I'm still getting over it. The lying down thing is because it's harder to expand your lungs when you're lying down (who knew?) She said to stay on the mucinex even though things are all dried up, as there might be some stuff there that needs to get broken up.
So, we shall see! Meanwhile, I simply cannot sleep at night. And today I'm buzzing around like crazy - can't sit still! ACK!!
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IowaSue, I had my third round last week, and agree with you the effects are cumulative, and the bone pain was worse too. I took Claritin as advised by my Onc, but this time I really hurt. And I get just plain weak. I can go for a little while, then suddenly I am just out of energy and everything.
Today I'm fighting diarrhea. I get it after Herceptin. I thought I had managed to stay ahead of it, but am not so sure today....it's always something......I am so tired of being sick and feeling bad. Is anyone else feeling this way? I think I am going to take advantage of some of the counseling provided by my Onocology center, although I did talk to one of those people early on who seemed more like a cheerleader than a real support person. Today I just don't want to hear anyone say "you can do it",, "it's just a bump in the road", and all that. Today I want someone to say "poor you", " I can't imagine", and "just lay there for a while"........ and yes, I do think it's due in part to the accumulation of chemo and dealing with this situation.
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Elizabeth- Its hard to tell which is bring on your symptoms, hopefully the allergist will be able to dermine for sure, But i'd lean towards the wig being the culprit!
Iowa- Sorry to hear the SE were longer this tx... Dont tempt me to move there, weather sounds GREAT! Oh man, i just started my period it better not last for more than 7 days! I hate all these hormonal changes!!!
Calamity- Keep us posted, i was tempted to get mucinexyesterday, but feel so drugged with the chmo and all... My kids have an all natural holistic cough syrup i almost drank some so i could sleep LOL i see my dr tomorrow so i am just holding out! Def keep us posted!
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I'm now officially HALFWAY GONE AND DONE WITH THE A/C!!!
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http://www.youtube.com/watch?v=xodmwwNV18w&ob=av2e