Starting Chemo in Nov. 2011...anyone else?
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Thanks Qaatsi...now it looks like I am going to at least consider getting rads in Sedona. I've got time to figure it all out... the location is closer for me as you know. I'll share with you on that later :>)
Allagashmaggie..I have friends in Maine. Long-time friends that live in Bar Harbor full time...families have lived there I think since the 1800s. Lobster fishermen, hotel owners, restaurant owners.... I've visited up there twice....enjoyed it immensely. Yes, you nailed it, I'm in the Southwest, but we get lots of snow where I live at 7000 feet. We get tired of the winters like you folks do. It's nice to be able to drive 30 mile south and access red rocks and the Sedona area. I get tx there for chemo, so as chemo locations go it could be worse.
We still have to find a place that allows dogs. She's kind of our child, so we take her nearly everywhere, and to have to hire a petsitter would be an added expense.
Anyway. I'm 1/3 done with taxol as of today and as my husband pointed out halfway done with chemo in general. I had 4 AC DD tx and am done with those; will have 12 weeklies of T when I'm all done, so four of AC and four of Taxol...that makes the half-way point.
Today at least i was in quick/out quick, relatively speaking. Labs, doc meeting, pre-meds and Taxol took from 9:30 to 12:30 or so.
Hope all of you are doing well. Perseverance is the key--but we don't have to like it
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Winter has arrived here in the mid-west!! Burrrrr, winter storm warning for this evening:(
I have completed my 4 tx of DD A/C with little side effects, glad I didn't have to 5 and 6 tx. Next is weekly Taxol x 12, 2nd tx scheduled for Tuesday. Had an ultra-sound on my liver this week for elevated enzymes, results were negative:)
I want to share with everyone a book I happened upon and think it is worth reading!! "There's No Place Like HOPE" by Vickie Girard.
TGIF...hope this weekend is doable for all!
Cyndi
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Hi Ladies,
I'm new to the group, but started chemo in Nov of 2011 as well. I am doing the TAC regimen so I get my A/C & Taxol (Taxotere) in one infusion every 3 weeks. Anyone else out there doing TAC all at once? I found round 3 to be really really hard. I never regained my strength before heading into round 4 and I was pretty worried about what that meant for my last 3 infusions.
I went into chemo anemic, so we knew this would be an uphill battle for me on the red blood cell front, but I couldn't believe my level of severe fatigue was normal. My Onc finally tested my iron levels (I had to ask) and I was scraping the bottom of the barrel. Now iron supplements seem to be helping me. I am on Day 12 of Round 4 and I am able to function pretty normally, with the standard amount of fatigue and nausea.
It's amazing what passes for good news in my world now!
My sister, a marriage and family therapist insisted that I find a support group after round 3 so here I am
Sandy
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Sandy--I'm sorry you had to join with us but you have found a great group to support you. I have been helped and inspired so much during this time in my life. I finished 4 rounds of A/C on 12/27. I have 3 more Taxol treatments before I finish my chemo. When I first heard I needed chemo, I couldn't see into the new year. Now, I only have 3 to go. It's tough but you can do it!
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Welcome, Sandyland!
I started my TCH on November 15. Since you're not HER2+, it looks like you're on a different chemo combination.
I'm on Day 3 of Round 4 (of 6), and my SEs have become somewhat predictable at this stage. I will continue with the Herceptin (HER2 drug) until November. Like I told my ONC, I'm just trying to outsmart them and trying to control the SEs instead of having them control me (more proactive when they start).
I'm also having problems with anemia (didn't have a problem with it before starting my TCH). I'm hoping I don't have to get a blood transfusion before Round 5. I was in the "below normal" range but "borderline passable" for my Round 4 treatment. I'm not taking any iron supplements right now, but I'm thinking I should be doing so. What supplement did your ONC suggest?
I went in for my follow-up echocardiogram this morning because of the Herceptin drug, and I'm praying everything is still normal.
You'll find so much good advice and support on this thread, and I think it serves me well as a support group. I also get a lot of support through my free CaringBridge.org website. Here's a link if you want to check it out and maybe set up one of your own: http://www.caringbridge.org/visit/debwill
Take care, and I wish you much success with your treatments.
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Hi All,
I finished my 12 th round of taxol/herceptin today. Wahoo,Wahoo Wahoo. I am looking forward to a break form the SE's I have surgery in mid Feb and then return to chemo,mid march. So 2 months with no chemo, hope food will begin to taste better, will get some hair back a bit like normal hope. I have a trip planned for work, about 3 weeks after the surgery and then home a day or 2 before I begin chemo again. I'll have to work, but can eke some time out at the pool. So barring any complications from surgery, I will be "away " from all this for a few days.
I wish all a gentle weekend.
Nel
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Hey ladies. Is anyone on Abraxane? I know it's just Taxol dressed up in a prettier solvent. I see all these supplements for the neuropathy, but is there anything for the bone/joint pain? I was quite surprised by how much it hurts, and would love ideas for something to take for it. Besides the pain pills that make me so goofy. I'm goofy enough without them!
I was so relieved to be done with AC... but I guess all chemo kinda is yuck.
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Beth, thanks for the encouragement
I am heading into round 5 of 6 so I definitely see a light at the end of this tunnel. I'll get there, but there are moments when I haven't been so sure!Deb, wow...I really feel for you gals on Herceptin. I understand that can be pretty rough and I count myself very fortunate that I get to skip that particular treatment. My Onc suggested an iron supplement that has 65mg Iron and 125mg Ferrous Sulfate (Costco has a good one). My iron levels are so low that she said it would really take about three daily doses of this to get me caught up, but my body simply would not be able to handle that so I started with only 1 pill every morning. I'm about a week in and I feel a dramatic difference from this same time last round. Iron can be hard on your stomach (constipation, etc) and since the chemo and anti-nauseas also wreak havoc on your stomach/intestines, you have to be careful. I would highly recommend asking your Onc about it. My red blood cell levels hover around 9 and since 8.2 is the "you must get a transfusion now" point...I was flirting with disaster all the time. I go for my 5th infusion on 1/30 and I'm really anxious to see what the iron does for my levels.
Gamegirl, I don't know if this will be applicable to your situation, but my Onc told me to take Claritan after my Neulasta shots, specifically for bone/joint pain. It was discovered, accidentally, by chemo patients with allergies, and nobody is quite sure why it works, but it does. I begin taking one Claritan (over the counter) prior to my Neulasta shot and one every morning thereafter so long as the pain persisits. I have found it to be really effective.
I love this thread already and I'm so happy I jumped on! I love my family and friends, but nobody truly understands this pain and fear unless they have walked the road themselves. I needed this.
Hugs to all of you
Sandy
My Blog: www.sandygledhill.wordpress.com
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Welcome Sandy! It's a wonderful group to connect to, get advice and encouragement! And, thank you for your advice on the Claritan. Last time I talked to my Onc about the pain, he gave me a new pain killer. I'm going to ask about the Claritan.
Thanks everyone for the advice for the cramping and Big D. I will try to stick with more BRAT diet and earlier this time.
GrandmaV - I haven't seen you on the page for a couple days - you doing ok? Thinking of you going into radiation.
I am taking my girls skiing (just observing from the lodge for me) this weekend, before I go in on Tues for my 4th out of 6 T&C treatments. More than 1/2 way done - Yeah!
Hope everyone has a restful and gentle weekend,
Juanita
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Thank you, Juanita, for thinking of me. Physically I'm doing well. But I still don't feel like myself. I still have the tinnitus, it's better some days, worse on others, I still have the depression that started after that last chemo. I've been taking the depression meds about a week and a half. I went in for the ct scan at the radiologist. I don't know what to do. I asked to see the scan results and he said there wouldn't be anything for me to see. He told me before the scan that there's less the 1% chance of damaging my lung, but he did finally agree for me to see the scan results, but after seeing the scan and the plan, that's just not true. They will damage the lung, so it's a 100% chance. In order to get the whole breast, they have to radiate the very top part of the lung and it will be permanent. I could end up with radiation pneumonitis, a condition very much like pneumonia. I already have asthma and very prone to getting pneumonia and bronchitis. There's also the possibility they will damage my esophagus and I already have problems with it too from years of acid reflux. I've had to have my esophagus dilated once before. All this risk, for just a 20% reduction in the risk of recurrence. RO said, "It's a gamble" So I'm having 2nd thoughts about the radiation. I feel I do need radiation, but now that I know that they will damage the lung and that he's not being honest with me, I'm scared to go ahead with it. I wish I'd had this information before my surgery last October. I've lost my confidence in my ability to make good decisions. I've lost confidence in my doctors. I may seek a 2nd opinion, if there are any other ROs in my area, and if insurance will pay for it. I'm taking the weekend to think through this and pray about it. I may call my Breast surgeon Monday, to see if she would be willing to do another surgery, have a mastectomy and skip rads. I know surgery is not risk free either, but I think it has less risk than the radiation. But I don't know if insurance would cover a 2nd surgery. Would have to contact them to find out.
I have been keeping up with everyone's posts and am very impressed by the bravery of all of you have.
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COngratulations Nei-- how wonderful! I do not recall, what is the next chemo you will be doing? Enjoy your minivacation!!
To those considering rads-- I had radiation to the top part of my lungs in 1987 for Non-Hodgkins Lymphoma. I had what they called mantle radiation and it is the reason I am here today... Every Fall for years I got pneumonia which led me to leave a town I loved which was at high elevation and had seasons. I moved to the desert and I am better but I know that I cannot breath as deeply with the loss of 20% of my lung capacity.
need I say more about my opinion about radiation??? LOL
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Congrats Nel. How does it feel to be done with taxol?
Welcome Sandyland--I took one 24 hour claritin the day of my neulasta shot for AC-( I don't need one for my weekly taxol tx now) and took one claritin for at least three days after--and never had bone or joint pain, so I agree that it probably works well for that SE.
GrandmaV, I've been following your difficult journey through all of this...cyberhug to you from Arizona and sending some healing sunshine your way
Qaatsi--I don't have a choice about rads if I want to dramatically boost my survival percentage...and I do. The MD Anderson radiologist mentioned lung damage risk, but said it was slight--less than 1%. I have to take that risk. Hopefully because I've lived at 7000 feet all my life my lungs are strong anyway...
C
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grandmaV, i've been thinking about you and wondering how you're doing. i'm so, so sorry you're having a rough go of it. as you know, radiation is bringing me to my knees and i worry more about the damage inside rather than the burns on the outside. i know this is a hard decision, but i'm certain that you will make the right one when the time comes. it takes longer than a week and a half for depression meds to being working, so don't give up on that. please keep us posted on what decision you make and how you're doing. i'm thinking about you and sending you gentle hugs.0
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I haven't heard if my lungs have been damaged by the radiation I had in 2008. I had bilateral lumpectomies and radiation to both breasts. I still have my blue tattoos! I guess they didn't take everything with my bilateral mastectomies!!!
I used ice for my expander fill and it didn't work to numb the area. I had to hold the gauze and the PS put a band aid on to stop the bleeding. My sister has told me that I make my PS nervous. I went in alone this time and I was crying. He told me I didn't have to have reconstruction. I just told him I was emotional. It had been 30 days since my last fill and I felt like I was beginning again. I wish I had opted for no reconstruction. I tell everyone I could handle reconstruction with expanders or chemo but not both.
GrandmaV--blessings to you and I know the decisions you make will be the best for you. When we are put in this position, we don't know what to do and what is the best plan of action. I know this past week has been a crying week for me and I am feeling okay.
I hope each of you have a great weekend with no SEs.
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Andimom3-I take taxotere and cytoxin. I have been taking my blood pressure daily and will bring the numbers to my 4th and last treatment this coming Friday, the 27th. I have not been taking my blood pressure pills as they instructed me after the last fainting episode. And my blood pressure has been in the 150's/90's a few days this week. So I also plan to bring a pill with me that day so that if they think I need one, I will have it and not have to postpone the treament. I want to get this last one over with. I have heard of many people having reactions during the infusion, but they always say mine go well. It is later on that I have this issues. I am also anxious to see if the doctor will change my steroid dosage some because she had actually said she thought the problem may be related to the tapering off of the steroids. I will post about this as soon as I have the treatment on Friday and see the doctor.
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Beth - I am so sorry that the numbing didn't work. I know you hate that feeling. You have every right to cry...
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Beth - I am so sorry that the numbing didn't work. I know you hate that feeling. You have every right to cry...
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GrandmaV- So sorry to hear you are still down. My thoughts and prayers ar with you. I too am losing faith in my decisions, it seems like I get new bits and pieces of info that I should have received at the beginning of my journey. I am currently struggling with reconstruction issues. They made it seem so easy & matter-of-fact that I opted for Tissue Expanders when I opted for a BMX. Now I find out all the risks involved with patients that do the TE exchange either before or after radiation. Not to mention, I just found out I cannot have nipple reconstruction because of the radiation. What is a reconstructed breast without a nipple? I believe I should have been provided this information before my surgery. I am so exasperated! What next?
I also wanted you to know that a mastectomy does not preclude radiation treatments---- I have a BMX and am sceduled for 30-35 radiation treatments. The radiation will reduce my risk of recurrence from 50% to 25%, the chemo only added an addtional 3%-5%--- looks like I will have a 20%-23% of recurrence, not great but good.. Like a true warrior I opted for it all. I am growing weary too. Gentle hugs coming your way.
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Thanks everyone for responding to my post. Seems we're all having a rough time in many different ways. Back in September when I first got my diagnosis, after about a month of being in shock, I decided to fight with all my might to get rid of the cancer, and was very positive about what I was doing, I had confidence that my doctors knew what they were doing, asked lots of questions, researched everything I could, thought things through and made my decisions based on what I learned. Then I start learning as I go through the process that my doctors didn't tell me everything I needed to know. Now I'm suspicious of them and feel like I'm not getting the whole picture and basing my decisions on sketchy information. It's very discouraging. I try to be thorough in asking questions before, but if they're holding back on important information and I don't know enough to ask the right questions, or research certain things, how can I feel good about decisions I have to make now? I'm not sure why they do this. I've really been giving that some thought lately. Maybe it's because they want to spare their patients from the burden of knowing all of it, in hopes they won't have that particular SE, or they only feed their patients the information they want them to have, so they'll make the decision they want them to make, or maybe it's even simpler than that and that they're human and make mistakes or they forgot something. I don't know. But it really has added to my fear that I'll make the wrong decision for myself and make myself worse somehow, so that I won't be able to enjoy my life that I'm trying to save from breast cancer. If I continue with my original plan, I know I already have a noise in my head that is probably permenant, emotional and mental problems I've never had before, but may go away, and after rads, it may be harder to breathe, may have a cough and may be hard to swallow and I may still have recurrence. I may get heart damage from herceptin and I haven't even started on a hormone blocker that has it's own set of SE's that I didn't know about before. Then on the other hand I'm afraid of the cancer and what it could do to me. I'm sorry about the long post, but I know you all understand like no one else could.
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YaYa, I'm so sorry that you've had such a hard time with radiation. But I'm glad that you're nearly finished with it. I hope everything works out for you and I read on the herceptin heart attack thread that you're worried how the herceptin is affecting your heart. I understand that worry, believe me. I go in Monday for my echo. Thank you so much for your enouragement and I send gentle hugs back to you, too.
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Rose, Thank you for your post and I know you understand. I hope you can get the reconstruction issues resolved and will be very happy with the final outcome. gentle hugs back to you, too.
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Beth, You've been through so much already, I'm sorry it's been such a hard road for you. I understand about the crying, I've been doing more than my share of that lately. Thank you for being here. Hugs to you.0
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grandmaV, have you thought about a second opinion, even all the way down here in oklahoma city? it might help to talk to another MO and/or RO who can assess your situation. i know it's hard to even think about it and who knows if insurance will pay? still ... i wonder if hearing what another oncologist says would help you feel better overall. it makes me very sad that you're having such a hard time. i remember when you first came here that you were very upbeat and positive. im so, so sorry that you're having such a hard time.0
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Claire, Thank you for the hug. It's been difficult for all of us. I know I appreciate you being here to give us encouragement. Thank you and a hug back to you.0
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Kelley - I have worked throughout all treatment so far taking about 20 days off to date. That includes 2 surgeries and 4 rounds of TC that I just finished. It's really hard to balance cancer treatment and a demanding job. I teach, advise students, and do administrative work at a university. It's saved me sometimes by taking my focus away from treatment. At other times it has left me completely exhausted like this weekend, the second week of my last treatment and the first week of classes.
Because I couldn't take the Neulasta shot because of an allergy, my WBC was so low this week I had to wear a surgical mask outside my home. I considered not going to work, thought about all the work that needed to be done and that it was the first week of classes. I went in, hiding out in my office the first day out of embarrassment, then decided so what. There is no shame in this. I went to an important meeting and had to teach with the mask on. Everyone was great about it.
Besides exhaustion, the biggest problem I have is keeping good, healthy food at home and ready to eat. My daughter who has been with me all the way though this doesn't cook (much). It's hard to stop at the grocery store, then cook after work.
Coming home to a healthy, protein-rich meal is really important to keep up your strength. I hope you have someone to help with shopping and meal preparation. Also don't do anything after work. Just rest, but make sure you don't nod off to sleep or your night sleep might be less effective. Take it easy on the weekend. I give myself all Saturday to regain my strength. Chores and errands on Sunday only if I feel up to it. The weekend before my next infusion, I would buy tons of food hoping to keep well stocked for the next three weeks.
Hope you can manage ok. Work helped me feel I wasn't just a cancer patient, but still the person I was before.
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YaYa, I'm really thinking of going in search of a different MO, but first I have to decide about radiation. I'm seriously considering getting a second opinion for radiation. There should be a way to radiate the whole breast without nicking the lung and esophagus. There is a radiology group, that I just found out about that is associated with one of the hospitals here. I don't know how to go about it, but I'm going to try to find out.
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GrandmaV- I feel you are overwhelmed and the depression is making it really difficult to handle the SEs, next step of radiation, and distrust of your doctors.
We are going through this in winter. This cannot help. I grew up a little ways from Wichita. Kansas has lovely sun in the winter, find it when you can and sit or walk in it.
Depression is a beast that takes over your life. You may need more help than depression medicine. Ask your doctors to direct you to a therapist with experience with cancer patients. I've suffered depression for years and have had my therapist help me cope with this. I've avoided slipping into a depression so far. If you've never experienced a serious depression, you won't have the tools to manage it. It has to be learned and an experienced therapist can help you do this quickly. Therapy and antidepressants together give much better results than either alone.
I hope you can find the strength to ask for this help. But don't forget the Kansas sun.
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doxie, Thank you for your suggestion. I may do that. This feeling is new to me. I used to have the blues once in a while, but could always pull myself out of it. This is so different. I'm definitely not myself. It's hard to concentrate or even think at times with this constant noise in my head.
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GrandmaV- Please do this for yourself. You have so much going on that is distressing you. I've read along since the beginning of this thread. I would love to see you back to your original upbeat self.
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GrandmaV- One more thing. You need to laugh. Deep, deep belly laughs. America's Funniest Home Videos does it for me. Especially the videos with toddlers and the really stupid ones. Is there an old sitcom that does this for you?
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