Chemo June 2010
Comments
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HI Gang,
I am back from my NJ run. Made out ok but feeling a little worn this afternoon. Of course I had to leave the hotel at 5:30 am to catch the 8:30 flight becuase of traffic. Last few nights have been bad hot flash nights. Woke up in a sweat several times. I had my blookworkd done as soon as I got off plane because tomorrow is Taxol #7 treatment. Veins are looking really pitiful. I gave them a pep talk today and asked them to hang in there for 6 more. I even promised to send them flowers if it would help
As for the question around the MRI for the BMX - when I saw the BS last week I questioned him and he told me no mammo and only an MRI if I developed a lump in the minimal tissue I have left. I did have a BMX with immediate start to reconstruction. I had 20 tumors in the right breast and 2 in the left. The left was benign but had cells that demonstrated some tendency to change. BS medical recommendation was MX on right, lumpectomy on left but he told me he would support my BMX decision. As it turned out good thing I went that way - left had started to change cells and was headed down the path. Because of the type and stage I have both BS and med onc have explained in detail that my chances or reoccurence are more likely somewhere else in my body (if at all) but there is a % (which I dont' remember now) of a reoccurrence in the minimal tissue I have.
So.......rad is a must for me. Even if the rad onc says he doesn't recommend it (not likely since I had 4 lymph nodes involved) I am going to push it. I only had .5mm clear margin from the tumor closest ot my chest wall. I will take any help I can get to knock this beast down. Because rads is so concentrated it does improve the power of killing the cells left in specific sites.
Either way, good luck to all my sisters here with your chemo and your rad tx's tomorrow and Friday. I am so excited to be winding down on the Taxol. I just want to give my old veins a rest!
Hugs!
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Hey Liz I lived in NYC until 2 years ago and never once did that lol
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I had Taxol this morning. Toward the end of the infusion I started to feel like I was going to vomit. They stopped the Taxol and gave me an anti-med, then started the Taxol back up to finish it. Do you think its OK that it was stopped and started like that?
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Hi everyone. Spent yesterday away from all this BC nuiscance. Went to a friend's lovely home in Connecticut for a lady's luncheon. A wondeful, rejuvenating reprieve from BC. Hang in there everyone, we're getting there. As all of us are taking more drugs than we ever imagined posible, I laughed at this quote I just read.
"Reality is a crutch for people who can't cope with drugs". - Lily Tomlin
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RS711 - I don't know if the start and stop is OK, but I did it once too, so it seems to be standard practice (and probably better than the alternative of throwing up everywhere during tx!)
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RS711-->Like Latte said, it seems to be standard practice if there is any problem, such as nausea or allergic reaction. I'm sure its ok because you probably ended up getting the full dose. Hope you ae feeling better now!
Designermom-->love the quote! Glad you got to get away for a day!
Grneyd--> hang in there! Sounds like your halfway done? And yes, from everything I've been told, if you have 4+ nodes you have to have rads. I have three, and that was a "grey" area, but my rad onc thinks rads will definitely benefit me, so I'm going to do it.
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RS711 - it is stanard to stop and start like that if you have the reaction you did. They probably started it slower and will watch it. The good news is you probably won't have a repeat performance either. Funny thing about Taxol often when you have that reaction often it doesn't happen again. Bizarre but it would be a good thing if it didn't right?
I had my #7 Taxol today. Made out ok. Because I gained weight they recalculated my drug amount and increased my dosage. I actually had a bit of burning for a few minutes this time in my hand which was new. But I kept a hot pack under my hand and the burn didn't last long.
TMarina - my med Onc recommended that I definitely do rads and he sent they rad onc a note advising the same. I meet with the rad onc on Monday so I will know the plan then. I will keep you posed.
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I don't think the stop and start is anything bad (not like I'm an onco). It's better than delaying a week or not finishing at all.
Iam so tired today. I can't sleep with the steroids. Next week I think I'm going to see if they can give me a little Adivan in my premeds (they asked me this week if I wanted it). I've got to get some sleep Tuesday - Thursday nights!!!
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kittycat get teh adivan its very nice
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I have Adivan in pill form, but I think I'm going to ask for it to me mixed into my premeds. They did it the first time I had Taxol!
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I had an MRI on Tuesday (I am all done Chemo now) on my left breast (right one had the mastectomy) and I don't get the results until next Thursday when I go see the Onc about Tamoxifen. I am nervous to get the results and I hope everything is clear. Does anyone know what happens if it isn't clear? When I got my original ultrasound and MRI back in February the MRI caught something in both breasts but the biopsy only saw cancer on the right side. They want to keep an eye on the left side to make sure everything is okay. I just want this whole cancer journey to be over with and move on to reconstruction! Has anyone started Tamoxifen yet??
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SKD if they find something in the MRI I would assume they would do a Ultra sound and then a biopsy if they feel it is worth exploring. That is at least what they did with me back in March. Don't stress about the results until you need to. The stress just makes you crazy!
Our cancer journey does that enough.
I have a RX for adivan but don't like to take it. It didn't make me sleep but I did have nightmares when I slept on it. They never offered to put it in my pre-meds probably because the Benadryl knocks me out so much anyway. Of course my problem is once the steriod kicks in I am awake for two days. At least I get a lot of work done on Friday (I have chemo on Thurs afternoon). Good luck with Adivan in your IV Kittycat. Let me know how you make out with it.
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Woohoo! Friday finally here! Work has been kicking my butt this week! Boost #2 today, then off to a dog show this weekend! Hope everyone has a great weekend!
Julia
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Hi Gals,
I saw the chemo Doc on Monday and due to how sick I have been we decided not to do the last Docetaxol as the risks outweighed the benefit. Two weeks after the last one plus nuepogen, my counts are still low and I have to take more nuepogen. I have mixed feelings about this. Happy and worried. I had my rads simulation and tats done on Wednesday. It is a 5 hr. round trip to rads in another city so I decided to stay at the hospital hostel Monday to Friday for the entire six weeks. I will miss my family but I also feel they could use a break from my illness and ME. I have breathing problems already and I worry about that. The rads doc says it will definately do more lung damage and I will get lymphedema. Oh joy. I continue to pray for those still on chemo and wishing you no s/e. After this is all over and things return to "normal" I wonder what the "new normal" will look like?
Love and Hugs, Mimi
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Hey ladies, nice to be back on.. I have been having a tough time with everything, go figure and my treatment is over..Life for me emotionally has been a complete HELL. I am glad for those that are doing well and almost complete.. Hang in there it is almost over.. I hope that it becomes easier for those that are having a hard time.. I am sorry I am not responding to everyone individually.
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hi kittycat - i like the new photo - is it recent (i.e. a wig?). I take an ativan before each tx - it's the kind that you put under your tongue to dissolve, i find it just takes the edge off a bit and de-stresses me. But it doesn't help with sleeping after tx, i'm still awake for 36 hours after each tx. (but only 3 more to go, yay!)
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mimi- So sorry about your struggles and SE. I know it will be hard to be away from your family, but perhaps you can use this time to totally focus on your needs. Rest, read, relax, meditate on being healthy! Perhaps the hospital hostel has skype and internet service? If you don't have it on your home computer, webcams are quite inexpensive ($25). Skype is free. If you got your home computer system set up before you leave for rads, you could visit and see your family via skype each day at a certain time. I hope you have an easier time with rads than chemo.
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Mimi, I hope things start going your way now. I know how frustrating it is to not finish the chemo but I did not finish with Taxotere and am already in rads> I have had 8 treatments and am doing well. My onc gave me a prescription for Femara today. I am post menopausal by the hormone testing so I do not need Tamoxifen. Still trying to get Vit D level to come up. I am now taking 50,000 iu once a week and 3,000iu of Vit D3 daily. My onc says the Vit D is very important and wants it around 100 where mine was at 16 after chemo. It was okay before chemo but not as high as 100. Oh well, hope this plan works.
Have a great weekend everyone and I am going back to 6 hr days at work starting Monday. Wish me well!!! Ginny
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Hi Ladies:
Hope folks are doing okay - Vicky - sorry you're struggling. I had my MRI this week- the tumor shrunk a little, not a lot - that's what the onc had expected, since I'm ER+. The surgeon thinks he can do a lumpectomy and that the breast won't look too bad. After surgery, I want to wait a while before starting rads - why do they want you to start immediately? I would like to get some energy back. Anybody with a recommendation? Toni
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Taking tamoxifen for the first time tonight!
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I'm so sorry that some of you are still struggling. This journey never seems to end. I hope your SEs subside over the weekend and that you get some enjoyment in the next few days.
Today I had #9 of rads tx. 17 more regular tx to go, plus 7 boosts. Nothing too uncomfortable yet.
Saw my wonderful BS yesterday and don't have to go back for 6 months! Yippee! Even though I adore him, I'd rather not see him often.
As horrible as this all is, I'm feeling humbled and grateful tonight. I got a call two hours ago that one of my former clients, a young woman in her 30's, had an auto accident today here in town and is now paralyzed from the neck down. As of right now, the prognosis is that she will be a quadriplegic for the rest of her life, if she pulls through. I would rather deal with this cancer than that situation any day. If you have time, please say a prayer for Sherri.
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Had my 6th Taxol/Herceptin treatment today - 6 more to go. Some s/e are swelling in lower leg and ankles and headaches. Dr. gave me a mild diuretic so we will see if that helps my ankles reappear. WBC was a bit low but no shot needed so...
Sorry for those of you who are having a hard time. I'm glad I am on the weekly treatment - seems a bit easier.
Liz
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Bon-I'm with you on the "we have so much to be grateful for" belief. In spite of this torturous treatment, I wake up every morning truly grateful. I open my eyes and say "I'm here"! I will pray for your friend Sherri.
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Thanks everyone for your response, I'm just paranoid about every little thing when it comes to treatment... I guess we all are... this is scary stuff. I too am struggling with getting some rest at night. My Dr. wouldn't refill my Rx for ativan because she says its habit forming... but what are we supposed to do!!!
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Mimi, hello!
I just wanted to hop in here a minute and tell you that there are steps you can take to help lower your lymphedema risk. Many women set up an appointment with a well-qualified lymphedema therapist before rads, for baseline arm measurements for future reference, personalized risk reduction tips, and fitting for a compression sleeve and glove or gauntlet (fingerless glove) to use during rads. The garments encourage lymph flow. They can also be used for exercise, travel, and any strenuous or unusual activity.
Here's more risk reduction information:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
http://www.LymphNet.org (see their Position Papers on Risk, Exercise and Air Travel)
And here's a page to help you find a well-trained lymphedema therapist in your province:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
(the link to the Therapist Locator on that page is especially helpful!)I'm really sorry for all the hassle and struggle you've been though already, and really hope this next bit will be smoother sailing!
Binney -
Second week in a row now that I was not able to start chemo due to low blood counts, both WBC and platelets were low. Very frustrating. I told my husband that maybe this chemo regimen wasn't in the cards for me this time. He said that was wishful thinking.
For the past three or four days both my knees have been aching and when you add in the fact that the bottoms of my feet have been burning, tingling and numb for 3 weeks now, I'm having a hard time walking. Last night I had a terrible night because all my joints were aching - hips, shoulders, knees. I know that painful, aching joints is a fairly common SE of Taxol. Is it possible to develop this type of SE three weeks after my last Taxol tx?
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Sherry9316...I'm so sorry that you are being delayed with your Taxol tx and that you're hurting. I am so fortunate as to have had Neulasta after each Taxotere tx. It kept my WBC up the whole time. And my RBC didn't fall farther after tx #1.
I learned while on Taxotere that the SE can appear at almost any time. That terrible rash I had started on day 12 after a tx (once every three weeks was my schedule) and the manufacturer of Taxotere side it was from their drug, even though my onc didn't think it was possible after so many days. Taxanes are nasty...maybe lifesavers, but still poison and their long lasting effects include the good and the bad. So could be that the aches and pains are really from cumulative effect of taxol.
Actually, I am finally starting to understand that I have neuropathy in my feet. Yesterday I had a pedicure and honestly couldn't feel her working away on a terrible callous. She kept asking if it hurt and I to say that it didn't. I wasn't willing to say that I couldn't feel anything at all. I do have twinges of pain when walking...feels like pebbles in my shoes and electric shock all at once. And that's 5 weeks after the last chemo! I've known about the neuropathy in the area of my scar where the nodes were removed during surgery...and near my port. This week when the BS massaged that port area to break up scar tissue, I almost jumped off the exam table in pain. But there are areas right around that port where I can't feel a thing.
While I was waiting to see the BS on Thursday afternoon in a packed waiting room, I met a lovely woman who is 10 yrs NED. She was very encouraging and told me how she was going through this at a time when it was std. procedure to do chemo, rads, and then more chemo. She said how terribly sick the Adriamycin made her but that the Taxol was the worst for her. She remembered it like yesterday but said how she really doesn't think about it every day now and has been able to reclaim her life. In fact, one of the things he did while in treatment was to make a 'bucket list' and she made good on some of her dreams...one of which was to open a bathing suit store where she specializes in suits to fit women with different breast sizes and mastectomies. She is very successful here in sunny Florida...partly because of the need for that and I'm sure, partly because of how genuinely lovely she is to everyone. So....my bucket list items fall far short of that type of goal, but still, I'm trying to get myself to realize that this is all there is and I need to make the best of the rest of it,
My hopes for a positive weekend for you all. Bon
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I haven't been on in a few weeks. With returning to work at the school and my kids going back to school and their activities AND continuing my chemo I have been totally wiped out.
But I am done with chemo!!!!! My last treatment was Wed. Hip hip hooray!!! What a huge relief. I honestly had thought in the beginning the chemo would kill me. But I'm still here. : )
Had my appt with the rad. onc. on Thurs. Simulation in 2 weeks. I didn't realize they radiate the entire breast. She says probably 16 tx with 5 boosts. Not too keen on the lung scarring and heart damage stats but I guess its a chance I have to take.
Follow up with regular onc in a month to discuss/start Tamoxifen. Even though I'm technically triple negative he says the new guidelines coming out say if you are at least 1% positive you should take it. So he wants me to do it. More side effects and stats to research. UGH!
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Workmother--> Yay to being done with chemo!!! I will be having my simulation around the same time as you--haven't made the appt. yet, but that's what doc and I talked about. My last chemo will be Tues. What did your rad onc say about heart and lung damage? Mine said that nowadays there is no heart damage, other than a tiny bit of scarring that won't ever be noticeable. He said he's never seen anything worse than that. And a little scarring on the lung that will only be noticed on an xray or ct scan. He's knows how worried I am about doing rads again (had it last summer for colon cancer and had a lot of problems!), and I felt like he was being honest with me, but I still worry!
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Workmother- Congratulations on being done with chemo!!!!!!!! Like Tmarina I was told the odds of heart and lung damage are slight. Unlike twenty years ago when they would aime straight at your breast and blast away. They now come in from an angle and calculate the best way to avoid the heart and lungs. Of course ladies we have already experienced the unthinkable. So it is hard to not worry about what other bad stuff could happen like scarring from radiation damage.
I am tired today and going to be early.
Sherry and Bon- I am continuing to have neuropathy in feet and hands. It's not terrible but I am two and a half weeks out from my last Taxol and see only slight improvement. I am trying to stay patient. Didn't someone on this board say that their Onc said 6 months to get chemo completely out of our systems?
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