August 2015 Chemo Group
Comments
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Hi all, it's my first post, want to share some of the experience. I had my second TC infusion on 24/8. 9 days later I started to develop hives/rashes all over the body, lips were swollen as well. I was given steroid jab and have been on hydroxyzine since. Hives are gone, but rashes on the sole are still itch. Not sure if I can still continue the TC treatment.
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Hi ladies, I just found out that my WBC is 7 does anyone know what the range is? She told me that I am very low...how high does it need to be for infusion? I am due sep 17 for round 2. TCH is my treatment plan every 3 weeks.
Thanks
Jewel
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Deeratz welcome fellow Canadian! The wig and no wig look great! I have also been off since before surgery and very grateful for my stellar health benefits.
Motherofmany im not 100% sure, but when the told me my white blood cell count was low they showed me on my report they showed my neutrophil count. For neutrophils they said the count needed to be at least 1.5 (with the reference range on the report being 2.0 - 6.0). Looking at my report now it also shows WBC with a reference range of 4.0-10.5... I'd ask your medical team.
Sloan15 the tingles started around the third or fourth day of shots. Nothing severe and right now it's not bothering me. Hmmm. Always fun managing and figuring out these side effects!
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VickiRides, you look amazing! May I recommend headcovers.com? I've written about them before, but I swear I'm not affiliated lol! They make sooo many different caps, turbans, etc. I ordered their sleep caps and a "turban" (it looks and fits like a cap) for my upcoming shaven head and they're so soft, just the right amount of pressure. Not expensive either and you can dress them up and down, make them girly or badass. Best of luck in your riding!
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I want to ask those who are willing to answer, and sorry if this is the wrong thread, are you experiencing a great deal of anxiety, and if so, have you had any "relief" from medication? I have only had the one infusion so far and the experience was so bad (see my former post https://community.breastcancer.org/forum/69/topic/833823?page=22#post_4489313) that I find I'm having panic attacks, cold sweats, nausea, crying, just thinking about this coming Monday. I thought I could speak to the Side Effects Specialist or I have an appointment with my Pain Management Specialist on the 23rd and I could ask him to prescribe something.
I've always been so self-assured and able to cope with my multiple chronic illnesses, and when I was diagnosed, I thought, okay, let's go, get through this. But instead, I'm feeling anxious and scared all the time. And reaaaalllllyyyyy pissed off about it all, too. As my mother has said, where there is anger, there is fear. She's right, but it doesn't help the feelings just now. Being almost completely house-bound and feeling physically rubbish is starting to wear me down as well, and I've still got to get through the next three and half months (if it all goes according to plan). I try to distract myself, but when the anxiety arrives, it doesn't ask if I'm ready. Thanks just for letting me get this down. xxxooo
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motherofmany what is your neutrophil count? That is the more important one. It need to be above 1.5 I think to get a chemo infusion.
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Bunny, I think asking for something for anxiety is reasonable. It can take awhile to build up in your system, so the earlier you can start the better. I want to also recommend talking to a trauma counselor, someone who specializes in trauma and trauma therapy. If the next few cycles continue to be rough, having someone else in your corner will help prevent something like PTSD from developing later. You can be proactive on this and it can be better. I hope the new specialist really gets the chemo side of things under control this time though.0
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DeeRatz, you look fabulous! I get what you're saying about Mission: Impossible . . . Who knew we'd be spies, right? I haven't been to the gym in a good long while (for some reason it makes me sad), but when I go back, I'll get those muscleheads out of the freeweight area, too. Here's to minor victories.
Michelle, your boss sounds great. It's wonderful to have that level of support! Take all the time you need!
Bunny, YES to the anxiety question. I ended up taking low-dose (half of a .5mg tablet) Ativan to sleep for a few nights, and my NP said I can take it before infusions if it helps. The great thing about Ativan is that it works fast; the bad thing is the potential for addiction. I haven't taken it in several days, but it sure took the edge off those first few nights after the infusion. I hope they give you something. This is hard enough without anxiety creeping in. Anger and fear are totally expected. Again: totally expected.
I've figured out my mood schedule with all of this. . . And, true to the first round, today the cloud has lifted. I guess that means I get a couple of "normal" (whatever that means these days) weeks before the next.
I'm off to all-day meetings. I think I'll wear a hat today. It's good to have options.
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Bunnybumps, you have been through it all Gurl. I am not having any anxiety but I do have angry days. I don't feel fearful, but there is an emptiness, there doesn't seem to be a 'what's next' this time. When I had my brain tumour, I was focussed on getting the surgery, healing and getting right back to work. I set a time line and I followed it. But then the brain tumour wasn't cancer.... What I can tell you is that while I haven't used any medications there are others who have with great success. I second the advice to find a trauma counselor to speak to. What you went through is nothing short of a life altering experience. As a police officer I've seen many things that I can't make go away, but talking with others, and with professionals, helps me realize that everything I feel about it is normal, and can be managed using many methods (meds, meditation, support groups, exercise). I hope that helps at least a little.
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Bunnybumps - I just had my second infusion on Tues, and I did had anxiety a few days before it. It was mild anxiety, but there I was stressing myself out reviewing cancer articles and studies that had already stressed me out once before, i worried about SE, AND on walks I'd see other women and say to myself, " she doesn't have cancer, neither does she", and felt so sorry for myself (and why not? It's cancer!). I don't do well with the unexpected; I do better with a plan and when I know what to expect. Infusion day was actually fine. Then, the same lymph node on my head swelled up again (which freaked me out again), but the PA said, "Okay, now we know this is how your body deals with chemo and we'll give you neupogen earlier." I just needed things to make sense-I needed the SE to have a pattern- and I felt better. Maybe a pattern (and meds like the others mention) will help you. I'll be thinking about you and shouldering some of your stress.
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My first infusion was a rough ride, including four days in the hospital. I had another consult with my onco and I'm not quitting chemo. I've decided to give it another go, we're going to try a lower dose to manage side effects. I am really praying that it won't be so horrible, today is the first day I've felt ok, and I'm 17 days out from my 1st infusion. I really felt there was no way I could do that again, so I really pray it will be better. I'm shedding but I still have a lot of hair, I expect that will change quickly. I also have a raging yeast infection (vaginal) from the antibiotics I got in the hospital. Really hoping that clears up soon with the meds they gave me. I might scratch a new hole if it keeps up.
Bunny, yes go for some ativan, it really helps with insomnia and anxiety. The stress of this is over the top, I feel we need all the help we can get. Ask your chemo team for a prescription.
I am learning to make noise and ask for what I want or need. My chemo team responded fast when I said I was going to quit. Now they are actively working on managing side effects, I'm not just another number in the pile. They are offering me palliative care (which I learned is not just for end of life, but can even be beneficial for me with stage 1, because I have so many side effects), and I feel they are really listening to me now. I'm really hoping round 2, in four days, goes ok.
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Miserable day yesterday! & it was day 4 of TC! Ugh!
The Heat wave is the worse for me (than anything else) -- it's in mid 90s where I live in coastal San Diego, with no a/c. couldn't sleep for 2 nights. & parents won't let me go out. the house was like an oven. And the crazy people next door started burning wood in middle of the day yesterday. Finally we went to McDonald & sat for 2 hrs. then to Souplatation & for 3+hr.. til after 8pm... Had 2 fans on & slept in the den with all windows opened, still woke up 3 times...
This afternoon, I am going make my dad drive me to work just for the air-conditioning.... I'm telling you, by tomorrow, day 6 when the fatigue is gone, & heat wave will be gone, too!
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@RavenSally - so glad to hear you are giving it another chance and that your team is working to adjust treatment for you. Good for you for speaking up and giving it another go. I put a lot of trust in doctors in general, but now going through breast cancer, I am also much more vocal (with questions and requests). Good luck.
Hubby shaved my head this morning and it feels so much better!! No more velcro-head on my pillow! I do notice that I have a tan line where my hair used to be parted!
Hope everyone else is managing their side effects as best as they can. Remember - it shouldn't last forever. I know it feels like it will but we will get through it!!
Off to pick up my Emend prescription. Last time I went to the pharmacy I asked them not to just give me one treatment's worth but all repeats. [The first time I went to get my anti nausea drugs they only gave me enough for one chemo - which is sort of my fault - I didn't pay attention and I didn't really know how many I'd need]. I know that a lot of pharmacies do it on purpose so they can get a dispensing fee for each time they dispense a prescription (here it's around $10 per drug per fill). There has been some backlash in the news here about pharmacies charging the dispensing fee for each repeat even though it's all picked up at the same time. This didn't happen and my pharmacy said no problem (as they should) and are giving me all of the refills for the one dispensing fee.
Should I go out baldy or with some sort of head protection...hmmm
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Thanks everyone for the wonderful words of encouragement. I plan to ask the chemo team about meds, but I'm not sure Ativan will be one of them, as they're going to use that (among many others) to manage the nausea. I put in a call to the pain management specialist about the pain psychologist and had a good phone session with my counselor at the breast cancer support program. I also have a friend flying up from Virginia to be with me for the week so my family and DH can get a break.
I also texted with the side effects specialist today and he reassured me of his plan and that he is going to be there to monitor my reactions during the infusion. Feeling a bit better, but we'll see how am Sunday night...! Thanks again, wonderful women!! xxxooo0 -
Michelle, I finally took a razor to my head today too! The stubble was just too much! I took it slow and easy and managed to not cut myself. It feels so much better.
Bunny, Ativan is not a good med for everyday use--it is addicting and out of all the meds I have tried Ativan had the worst discontinuation syndrome. All Benzos (Ativan, Klonopin, Xanax) are that way--but every person is different--and in the end a little withdrawl is nothing compared to chemo! I just don't want you to be surprised if they prescribe an anti-depressant for anxiety--those are safer long term.
Superius, it is hot here, but I can't imagine not having AC. Stay cool and hydrated!0 -
I think it's kind of funny that my stubble hasn't fallen out yet. You totally have this vision that your hair is going to go all at once. I don't seem to have lost much since the day I had it shaved down to the wood. I don't mind the stubble so far, but my husband has a grooming trimmer with an electric shaver on it. We may have a go at the stubble tomorrow. I'm pretty hesitant to use a razor
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Mollie, I was desperate. I relax with my arm up by my head and the stubble just hurt too much. I was terrified since I had helped a friend shave her head (she came over with a cheap disposable razor) and I cut up her head pretty bad--she is rock and didn't mind but I was horrified! I followed the advice to go with the direction of the hair and went slow in tiny little strokes. It worked really well. It's not perfect but it is SO much better!0
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I continue to be inspired by the success stories, but also appreciate the honest sharing of struggles. Regarding friends bringing food, etc., I have to say I appreciate the fact that people care so much. Because I am trying to stay home to avoid a repeat infection, it is nice to connect with friends when they bring food and stay to chat for awhile. My friend set up a care calendar which allows for better communication, scheduling and sets guidelines for amounts and types of food, visits, etc. It does help to talk about it to reduce my anxiety and then we go on to talk about "normal" things. My strategy has been to share openly about my condition and then there is less of a rumor mill and speculation about how I am really doing. I am concerned that my treatment is changing course due to kidney, diabetes, and other blood related complications. I was supposed to have 4 drugs initially but only got Taxotere and Herceptin in round 1. Because I had such severe complications and side effects, I was only able to get Herceptin in round 2 which I seem to be tolerating. Depending on new test results, I may have to get surgery earlier rather than having 4 chemo treatments because I may not be able to tolerate chemo. It does make me concerned about whether I will be able to eradicate the cancer effectively with a more limited treatment plan, but protection of the rest of me is key, too!
Superius--this coastal heat is miserable,I agree!
RavenSally--glad you are sticking with it!
Bunnybumps--I think we all have some "moments" so glad you are reaching out and trying to manage anxiety before it gets too far out of hand.
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Pink sq, welcome! I hope your symptoms subside so you can continue treatment.
RavenSally, I'm glad people are now being responsive to you & there's a plan to go forward. You're very brave to keep on after your experience.
Bunnybumps, I have a history of depression and have been on an anti-depressant for over 20 years, so clearly I'm an advocate for mental health treatment. I second/third/etc. the posters here who suggest you speak to someone and look into medication to take as needed. (((hugs)))
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So pleased to see your message @RavenSally "I am learning to make noise and ask for what I want or need. My chemo team responded fast when I said I was going to quit. Now they are actively working on managing side effects, I'm not just another number in the pile. "
It's hard to be empowered when you feel bad, but your story is really encouraging for all of us. Chemo is a dialogue, not a done deal.
I am HALFWAY!!! My neutrophils are holding up but am a bit anaemic, which explains the tiredness. When I finish, I'm gong to be so fit and strong just by getting my bone marrow back to business as usual!
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"How much is that trilby in the window...?"
Trying to discover Bald Chic, even if [some of] my hair holds out.
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Good morning ladies - I pop in here from time to time to read about all the challenges we all face with our chemo treatments. You are all strong women! Facing hair loss and uncertainty on a daily basis. I almost feel guilty writing this that I still have my hair after 2 rounds of TC....thanks to the penguin caps. This has made a big difference in my mental health.. Just feeling "normal" physically makes me feel well.
I have also continued to train for my upcoming marathon which even amazes my self that I have been able to pull it off. I run 4 days/week and one run is a long run.I write this because running has made a huge difference again, in my mental and physical state. I feel normal when I run. It is like I have my old life back. Yes there are days when I don't want to but I don't give myself the option to not run. Afterwards I feel like I have won a round of BC vs ME. I win.
I don't post very often because I have been doing well and I see many of you struggle. But perhaps I can give some people hope that not everyone is down and out during chemo.
I wish I had a magic wand and I could wish this all away for all of us. For myself, I have to believe that something good will come from all of this -whether it is the people I meet along my journey or the relationships that strengthen. I don't know about you but I have had people come out of the woodwork in my life to offer support. It has been amazing.
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Suzanne, it's heartwarming to hear positive news! It's wonderful that you can continue training for your marathon. I'll accept the magic wanding--thanks!
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Kate, the wig looks amazing! I'm glad you found one so quickly that suits you so well. I'm using bandanas right now, because I have so many for my son in all colors. I tried a wig from QVC and returned it because it made my head itch so badly.
I feel really good right now because I'm almost due for my second treatment. Next Tuesday. I went out with a friend for dinner and a walk on the beach the other night after my wbc's came up to 3.8. Almost low normal range.
Bunny, I have anxiety too, and I think I'll be asking for something to take the edge off this time and help me sleep. That week of broken sleep and waking up at 2 am really sucked. I hope you get the help you need.
Thinking of all of you. You help me stay strong!
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"Chemo is a dialogue, not a done deal."
MsBrompton, you're so, so right.
As for my dialogue with chemo: I told it to eff off yesterday, and I'm hoping for a normal day today. I'm gonna take my dogs on a long walk (as long as I can take--I'm pretty sure the anemia is getting worse, as I've got some shortness of breath, but I'm also at nadir right now) and then watch some football. I might even have ONE "real" beer. The MO has said that one or two once in a while won't hurt. She's a big believer in living life as normally as possible, which I respect (and embrace).
I've long been a beer drinker, which all changed the day I had my mastectomy. I've discovered that there are, surprisingly, some decent NA beers out there. . . I'm a fan of Clausthaler Amber. It's certainly strange to drink a couple and have no effects whatsoever, but I figure I'm doing my liver/kidneys/miscellaneous other organs a big favor by sticking to the NA stuff. Not to mention the fact that I can always be designated driver. . . .
I've also long been a powerlifter, and that's on hold. I might be allowed to have a beer, but they've told me to avoid freeweights at the gym, since no one ever cleans them (gross). I'm counting down the days until I can get back to it--I've lost at least 10 pounds of muscle mass since this whole thing started. That said, I'd take that over an infection.
VELCRO HEAD IS THE WORST. I shaved my head last weekend (with a razor), and now it's growing back! Might have to attack it again one of these days. . . . The good thing about velcro head is that it holds hats and wigs in place.
Have a great weekend, ladies!
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KateB79, what's the problem with beer? I don't drink it but I asked my onco about wine and she said sure, have a glass.
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Kate, where do you get your NA beer? Here in ON they are available at the grocery stores but I've tried nearly all of them. The best ones I've found are Grolsh and O'doules. The others are name brand Canadian like Labatts max .5 etc.
I didn't try the liquor store or the beer store. Maybe I should.
Ms. B I didn't ask about alcohol at all because all of the literature points to less drinking the better. I was told at chemo class no alcohol is safe to drink. Who really knows.
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MsBrompton, I'm just trying to avoid alcohol because it's so hard on the body, and I figure chemo is hard enough, you know? There's no specific problem with beer (although there is some anecdotal evidence that hops are estrogenic). Wine is probably a better choice.
Molliefish, I get mine at a local store (in Michigan) that has an excellent selection. I'm more of an IPA/porter/stout girl myself, but I've found that the Clausthaler Amber is decent. Hell, at this point, I even like the St. Pauli NA, and Kaliber, made by Guinness, is also okay, if a little sweet. Have you tried the Labatt? I've seen it, but I've never been a big fan of regular Labatt, so I haven't had it yet. I say try the beer store. I've also heard good things about Bittberger Drive and Erdinger Alkoholfrei.
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has anyone on A/C had a sore throat. I have had one for 4 weeks..... is this just a side effect that I have to deal with for two more treatments?
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Hi . i'm new here...actually, have never posted anything anywhere in my life, but to answer you question, Yes i have mouth sores and a sore throat too, and i"ve only had 1 chemo treatment so far. i was looking around for advice on a wig when i happened upon this discussion board. so i will happily accept any advice from anyone who knows how to pick out or wear a wig that wont look fake. i look worse in a hat.
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Ahh it that time of the year seasonal pumpkin beer!
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