Anyone starting chemo August 2016?
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Sensitive- what a great picture! Its funny I read a lot of the posts just through my email, but the pics don't come through- so it was fun getting on here and seeing this!! So excited for you!
SusanQ- definitely deserved pitty party with the news, but love your fight- get back up and get it done. I know that after all of this, and the surgery there's a slight chance I end up with more chemo. Don't want it, but I'm not going to turn a blind eye to it. I used to be a "Q" by the way....maiden name.
Liz and Jiff- so sorry about the hospital rounds!
You are all inspiring...and I know I get so behind I don't address everyone I want to on here, but you are always a positive voice to me.
Dara- would love to get together....it would be fun if there's anyone else in the So Cal area too once we're all feeling better.
I'll need some feedback soon on anyone's advice for double mastectomy (I'm back with all the shortcuts so I typed it out lol).....that will be probably happening for me beginning of the year.
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Fingers crossed for you, ElizabethAM. I'm sorry that you've had so many challenges. :-(
Lyn
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So sorry you are spiking a fever. Hope things straighten out. I should be happy about no more chemo, but it scares me to know that I could not finish treatment and my chances of metastasis are greater because of it. Feel like I have to trust the doctor but I am scared. Also feel like a failure rather than a warrior because my body just could not take any more according to the onco.
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Sensitive - Congrats on being done!! Woot!
Marlenelin - You took your body to the edge. That is the best that can be expected of anyone. You don't want to trade the chance for recurrence for a very real different debilitating and/or life threatening illness. My dosage was reduced after my first treatment because my body couldn't handle it (it started shutting down my liver). I worry also, wondering if it is doing it's job at the dosage I'm at, but I need to trust my doctor that if he thought it wasn't, he would just have stopped the protocol all together. Don't be hard on yourself! And also, congrats on being done!
Elizabeth - That stinks about another fever. Thoughts are with you! Take care!
Susan - Another 2? Ugh!!! I'm so sorry. I am already mentally prepared to be done with the next one, so if that were to be the case with me, I know how devastated I would feel. Do something extra nice for yourself as a reward!
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Sensitive and Cali, congratulations!!!! So glad you've finished. I didn't get on yesterday. Post chemo yuck set in early. Couldn't even hold up my cell phone, was a bit nauseous, dizzy, and aches. Every joint is screaming at me today... but.... NO MORE to go! My mouth seems to be better this time, and I didn't do any icing. I actually didn't know they had started the taxotere so didn't take any ice. Oh well.
Susannah, I'm so sorry you aren't finished when you thought you would be. Doesn't seem right to surprise you with that news.
I need to go back and reread from yesterday but will do that later. Can't use the keyboard all that long right now.
Elizabeth, sure hope everything picks up very soon so you can be done! Hang in everyone! Dara
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Oh no Elizabeth not another hospital visit ... Thankfully not a long stay. Keep us posted on next weeks treatment. I will keep you in prayer 😍
Dara hope your doing alright your side effects maybe hitting.
Hugs to all
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Woo hoo! Last treatment 🎉🎉. My son and friend showed up every time. My DH always had to get me settled then head to work till he picked me up.
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I'm sorry yesterday was so difficult for you , Dara. Things should look up from here .
Marlene, it's so sad to hear you down on yourself for not being able to endure the continued assault on your body. I feel like so much of our treatment is something of a crapshoot. Many women have had to terminate treatment early or changed to reduced doses with good results. I know it sounds like a platitude, but all we can do is make a good faith effort, then hope for the best.
Lyn
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Thanks for your support.
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Yay, Caligirl55!
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Dara...sorry you felt so bad so fast. But yay we're done with that phase.
Today I woke up tired but wanted to get my errands done before I started feeling bad ... Plus it's my birthday so I wanted to have some fun! Had lunch with my mom which I couldn't taste but then had dinner with some of my kids and grandkids. Enjoyed the time with everyone ... Couldn't taste my rolled taco but my son brought me a yummy chocolate shake that was cold and awesome. A quiet time but so blessed. I took some meds and hope to rest well.
Hope everyone rests well & is comfortable tonight.
Hugs, Vicki 😘
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Happy birthday caligirl. Glad you had a wonderful day with the family. Hope your chemo is doing well.
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Hello ladies!
Sorry to be MIA for a while. I just needed a break from thinking about BC (like I can get that, right?) as I was heading towards going down that rabbit hole of dread.
Congrats to so many who have completed chemo! Yay yay yay! I've got 3 more rounds to go. If I don't miss any I'll be done Nov. 4. I plan to celebrate with my usual Friday post-chemo party...a nap. LOL
I see Sensitive and someone else developed a weird rash. I had one too. First was on my left leg. Then on my right chest just between my port placement and my armpit. It reminded me of poison. Though I have no idea how I would have contracted that. Both resolved but took some time. Got dried out like poison would. There was never any weepiness. Just incredible itch. No recurrence of that.
My current SEs du jour are nosebleeds and neuropathy. And I managed to have my nasal congestion and post nasal drip turn into laryingitis this week. When I called my MO to talk about it the nurse thought I sounded horrid, but I told her I felt great (minus the nosebleed, of course). I'm pretty sure it was just my typical change of season bout with sinusitis. But it sure is scary to get that when you're doing everything in your power to avoid getting sick. It also felt like my body was adding insult to injury and made for an emotional roller coaster of a week.
But I'm 9 down, 3 to go with the Taxol/Herceptin combo. MO lessened the Taxol dose when the neuropathy began.
Yesterday I fell asleep during treatment. Woke at the end of my Herceptin to a burning sensation in my GI tract. It subsided quickly but recurred at the very end. Was just about to call the nurse when I heard the tell tale beeping indicating that my session was over. Phew! But I still need to call the MO Monday and talk to her about it. It was weird and very scary. Can't even describe it well. Neuropathy is also no better, so I need to let her know that as well. Ugh!
Sending love to all. Will try to do a better job of keeping up. You all mean a great deal to me, and I can't begin to express how thankful I am for all that I continue to learn from your experiences.
Love to all!
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Good Morning Ladies!
Dara- I hope you're starting to feel better.
Marlene- I neglected to comment earlier.... I totally understand your feelings of worry...I too am still worrying about the what if's, especially as they are really getting the word out during BC month about metastatic BC. I even saw something on the Today Show yesterday. It's hard to imagine we do all we can to our bodies, and that there's a chance of it coming back or spreading. We will all need to lift each other up and out of that! Periodically I'm even googling and trying to find statistics! I'm bad. I had met with the radiation oncologist and she didn't think I needed radiation, but I think like you- well maybe we just need to add the to keep this done. I don't see that you've updated your bio, which is totally fine, but I'm not sure where you are in the whole process (for example- I started chemo first, then I'll have surgery). But want to say you ARE a warrior...some will do more chemo then others, some surgeries are more intense, same with radiation. I'm glad you asked your MO what he would do with his wife...perfect! Be proud...they can always revisit options like he said.
HAPPY BIRTHDAY VICKY (AKA CALI!!)!!!!
Fire heart - thanks for sharing your SE's, and keep us posted on the neuropathy and what the MO says about the scary GI burn/pain.
Can I just say too....as I know I feel like this sometimes- this board can get overwhelming, and you want to post and then feel like you're "behind" and won't address or comment on everyone you should. Please don't worry about that! Please post and let us know how you're doing...I don't think we all feel like we need comments back. I think everyone just sharing what they're going through is helpful and supportive....so let us know how you're doing.
Happy Saturday....maybe I should eat some cake to celebrate Vicky's birthday haha...funny how sweets still taste good even with chemo!!
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Hi all.
Vicki, the very happiest birthday!!! I loved your last picture of your son and friend. They are both so special to make it to infusions! I thought at first your friend was your daughter (or sister:-) ) This last chemo, I was actually in one of the recliners, and found it so much more comfortable! Your day sounds really special and surrounded by people you love.
Sorry I haven't been supporting all the way I wish I could have. Usually I am able to sit in my chair and have my laptop right next to me. Something will peak my interest and I'll even google, say what movies or show a certain actor was in. Well, since Wednesday, I've been pretty much probed out in bed and sleeping. SEs hit earlier this time, but at least I can tell myself that it's the last time for all (hopefully) except some fatigue. This time, every joint was so fatigued I couldn't even hold my cell phone, let alone type. I'd try to walk around the house, and my legs would give out, and dizziness hit when I'd stand. Today is getting a bit better. And the great thing is my mouth is improving very quickly. I got the white yuck on Thursday, but it's already going away and taste coming back. I had made a big pot of chicken corn chowder with bacon on Tuesday while I still felt ok (I know sounds really bad for me doesn't it!) but it was one of the few things I could still taste. That and rocky road ice cream! lol) I've been lucky in that my weight has remained the same since dx. I had been so good at first, eating organic, healthy, and no sweets, but then chemo hit! I have my RO consult on Oct. 26 and then will see my MO on Nov. 7 to start AIs while on rads.
Fireheart, so nice to see you back again. I thinks e should all make a pact that no apologies are necessary for any absences, vents, rants, or fears. It's hard to live with this day to day and not be able to ever get away from it, especially when we look in the mirror! Someone mentioned about the neulasta ad and it's really been ticking me off lately. Couldn't they at least put her in a scarf or something? I've really gotten to hate the look of my bald body! I noticed a young woman in chemo with her nude head and she looked so beautiful! She just had the best shaped head and really looked good! I have a flat head in the back have a couple of really weird gray hairs growing on the side of my head... but only about 3! What's up with that????
Kelly and Marlene, we understand the fear about metastatic c. All of us, no matter what stage we're originally dx'd with, know that nothing is 100%. We learn to live a new normal life, but in the way back of our minds, we know there's a chance.... It surprises me when I hear about BC Survivors, because I worry that we never completely "survive" bc but have to stay vigilant that it doesn't come back. And if it does, we just hit it back down again. My sister used to call it "Whack a Mole" (remember that game at Chuck E Cheese?) I just know all the new drugs, studies, etc. that have come about and know that this battle will be won in the future.
We can do this all... especially with all of your support! Love you all! Dara
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Dara, thanks for your support and encouragement. With 14 malignant lymph nodes that broke through the walls, I'm not very optimistic. It is interesting that your onco is starting AI while you are on rads. When my stopped my chemo Tues after only 6 treatments he said I should see him in 4 months to start AIs. We are questioning that and left a list of questions with the receptionist yesterday while I was at Penn having my ct scan to map for radiation which I will start Nov. 2. Still have not received a response. I'm going to email my surgeon to get her opinion as well, since the onco said that the most important part of my therapy is the AI, so I don't know why he is waiting so long.
It has been 18 days since my 2nd and last Taxol infusion and I am still hurting. Took a mile walk with hubby this morning, and then went grocery shopping with him and my hips are so sore and I'm still nauseas and indigested. Hopefully, that will fade soon.
My chest looks like a road map. Was very careful showering this morning not to wash off the markers where they put the tattoos in. I will have to have another ct scan a day before I start radiation because my breasts hang so much that they are having difficulty figuring out how they are going to radiate. I am opting for proton instead of photon.
My diet while on chemo has not been great either. I am diabetic and normally stay off all carbs, but since on chemo the only thing I seem to get down is chicken noodle soup, and pasta with pesto sauce, and some toast. Now that I am off chemo, once the nausea goes away I've got to get back to my non carb diet.
Hope everyone is having a restful weekend. Take care
Marlene
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I'm checking back in, Ladies. Trying to catch up on all your news is both exciting and scary. For those who are finishing up chemo--congrats! For those who have had problems with chemo, I'm so sorry. I have had so many SEs that have been so bad, I've seriously considered calling this all off. I told my family at the very beginning that I wasn't real sure if I wanted to do chemo and the 4 AC DD infusions have led me to question if I made the right decision in the beginning or not. And I'm not done. I have 12 weekly Taxol facing me.
I was supposed to have a normal 2 week time span between the last AC and the first Taxol but my labs changed that. Everything was bad so I had another week delay. I'm scheduled for Taxol #1 on Tuesday if my Monday labs are improved enough. These three weeks I've felt like I was in a pit. My energy level is still at zero, and my mouth is still messed up, too. FIngers still have blisters and feet are trying to heal but only a little progress there. My vision is so bad, too, in addition to the dry eye/watering. Anyone else have that? Blurry no matter how many pair of old glasses I go back and try. I had foot neuropathy before this started so I can't tell if it's worse or not. I assume the Taxol will show me.
However this finds you today, ladies, we are all warriors. The fight is real. The enemy is real and ferocious. May you be able to rest on this Saturday so as to fight another day.
Best wishes, barbarau55
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Marlenelin - just wanted to jump in with others here regarding your situation. It breaks my heart that you feel like a failure. Everything you have done so far is amazing, above and beyond what many have to endure. We can only do what we can do with the bodies that we have. You asked your doctor the right questions. Now you can ask others as you move forward, too, if you wish. Maybe there will be differing opinions and some other options. I do understand you fears, as do all of us, I'm sure. I'm doing a 12x Taxol, Carboplatin Perjeta and Herceptin protocol. Last Thursday (after 9 treatments) my MO said she's taking out the Carboplatin because it isn't safe for me anymore. I cried for two days straight and was so disappointed in my body. (Then somebody said to me - your body is so very wise - it is telling you something - listen. That helped a little bit) Anyway, I asked my MO if she had my problem would she do the same and she said unequivocally yes. She said it's a rare patient that doesn't need a protocol adjustment and when an MO treats he/she uses the protocol as a general guideline and then adjusts drugs, dosages, rounds, etc. in order to find the best scenario that supports the best outcome for that particular individual. She said that even in the original studies that determine which protocols are best for which types of cancer, these adjustments go on. She said so much mystery remains in cancer treatment that there just isn't certainty (as we know) with anything. What she did feel certain of was the fact that it would be an immediate safety issue to continue the carboplatin. It seems that your MO feels the same way about you. Lastly, there are many people who think that diet changes, exercise (specifically tai chi or qi qong ) mindfulness meditation - basically a very healthy, well balanced mind- body-spirit connection is critical to reducing recurrence. And you have the AIs, too of course. So you have other things in your arsenal besides the chemo. I wish I could comfort you. Please know you are not alone. Sending good thoughts and hugs to you.
Dara and others who have finished - congratulations!!
Cali - Happy Birthday!
Wishing everyone a weekend with few side effects.
Peace to all.
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Willa- may I ask why she stopped carboplatin? I'm curious as that is one of the drugs I'm taking. No worries if you aren't comfortable sharing. Thanks-
Kell
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Oh, barbarau55, you've had such a battle! Going into treatment with a number of existing conditions, I may well find myself in a similar position so I can imagine how torn you are about whether to try to proceed. I've noticed that some women who had chemo before surgery said their tumors shrink during the AC phase of treatment, but not the Taxol phase so perhaps the drugs you've already had will be fully effective. Is your MO compassionate and understanding so you can be frank about your feelings?
Hugs,
Lyn
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ajbclan: On the Carboplatin - she wants to stop because of my wbc counts. I can't take Neulasta to bring them up (due to some other issues) so my body has been on its own to do that. I've done okay through 9 rounds but they have hit rock bottom. She doesn't think I can get my wbc up again by next week (I do weekly chemo). If for some reason I rebound then we can try again on the last two rounds . I hope I didn't scare you when I said "safety" issues - I just meant for my specific situation. Take good care!
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Thank you so much for your pep talk. It means a lot to me. Your MO seems very wise and very caring, giving you good explanations. Unfortunately, I get brief answers from mine when I see him, a rarely get return phone calls. I've certainly had adjustments, 20% in AC, 23% in Taxol, and then no Taxol at all for last two infusions. Well, on to radiation Nov. 2. Take care
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Thanks Willa! There aren't as many folks using that, so I don't get as much info on it like what's happening on the other drugs. I'm on a 21 day regimen and able to take Neulasta so my body has the time to recover. So appreciate your feedback!! Hang in there everyone.....
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Morning sweet friends ... Thank you for the birthday wishes. What would I do without y'all 🌻
Kelly...we do need to keep each other lifted up. No one can understand each other like we do.
Dara...my friend will be so happy if I tell her you thought she was my daughter since she is a year older than me. See what happens when you have no hair ...now I look old too 😬 I am glad you had your treatment in a comfortable recliner but pray you never have to use a chemo recliner again ...ever!! I guess your SE coming early are leaving early ...yay you! I agree with your Mole example we just all have to keep beating this evil that has invaded our bodies ... One mole at a time!
Barabaru55... You have had an unfairly rough time I'm so sorry.
willa216... Yes that's the best advise ..so wise your body is doing its thing. I love that 💕
I agree with you ladies when you feel up to it share your heart & aches & pains. But when you don't feel up to it just know we are thinking of you.
I haven't ate well during chemo some days pudding and crackers are all I can eat. I hope I get healthier than I ever was after this battle. As I start tofeel better I start to get worried about my upcoming surgery. Do I need new bras? Will it be painful after? The whole lymph node thing scares me. I am not understanding it so I have to ..breath & keep calm for now...one day at a time 💕
Have a nice Sunday ... I plan on resting since I'm still so tired 😘
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Cali- what surgery are you planning to have (may I ask?)....I'm starting to think ahead as well and prep for the next adventure (I wish!)....I have an appt this friday with a plastic surgeon, planning double mastectomy.
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Cali, I think you're having a lumpectomy correct? The breast portion of the surgery really didn't cause me much pain at all, just a little discomfort. The incision for the nodes was bigger and caused some discomfort, but I took pain meds the first day after surgery and lots of ice, and then just iced constantly. The week after surgery, I even took a 3 day photography class where we were out climbing down in a gully to photograph silhouettes . By the end of the evening, I was a bit sore in my arm pit from holding my camera in close to my body.
Most everyone says the lymph node surgery causes more discomfort than the breast so just do your exercises you're given (they want you to start the very next day with some small stretches) and plan on just icing every few hours. I know some have issues, but personally I have done super well with it. I have had quite a few orthopedic surgeries over the last years, and know I have a pretty high tolerance for pain, but most feel the lx is not that bad. Your tumor is about the same size as mine was, so my surgeon didn't use a drain afterwards or anything like that. They start with the sentinel node, and if that is clear, my bs said they stop there.
They wound up removing 5 nodes (some get kind of clumped together, and now I am just careful and don't let medicals take BP or blood from that arm. I do have a medic alert bracelet in case I'm not able to tell them about the node issue. And now I can barely see the scars (not that I care about 2 more scars lol) My tumor was right smack in the front of my breast, right above the nipple area, so I have a thin about 2" scar. My bs said that will fade quite a bit after rads. Drop in to the Lumpectomy Lounge; there are several bc sisters who have just had surgery. Surgery is absolutely NOTHING compared to chemo!!! You've got this. Big hugs!
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Caligirl55, my lumpectomies were very tolerable. I agree that the sentinel node biopsy incision was more painful than the breast portion. I only had 3 nodes removed, but they were deep and I think that increased the discomfort. My cautionary advice would be to avoid having any seromas drained. The resulting infection delayed my chemo by weeks and the seroma refilled with 48 hours so it was basically all pain, no gain. You'll probably want some comfy sports bras and may even want to wear them to bed for a bit to prevent any stretching or jostling of your incisions. I prefer the bras without hooks, but found it better to step into them rather than reach overhead. You'll do great!
Ajbclan, I'd suggest asking to see your PS's photo gallery, preferably women with a similar physique. I'd chosen a PS planning to have implants & BMX. His iPad was dead and when I saw his PA later to view photos, the results I saw were very disappointing. At my age and weight, I wasn't expecting to have the playboy bunny figure of my youth, but the photos I saw were not attractive to me.
Without scrolling back for pages, when did y'all lose your hair after your first chemo treatment? Did you start with a buzz cut? Would you happen to know the blade length? I think that's the right term. My friend was a dog groomer & I may have her super sanitize her clippers so that I don't have to have the dirty deed done (dirt cheap, if you're a rock music fan) in public. Thanks!
Lyn
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Lyn, I started losing mine cry early, within about 12-14 days after first infusion. It was just coming out whenever I ran my hand through the hair. I finally buzzed it on day 18. I went to my hairdresser but she even volunteered to come to my house if I wished. I put the wig back on super fast. There was a man coming in for a cut after me, and I laughed at the hair on the floor, looked at him and said, man, I only asked for a little off the top! It really wasn't as traumatic as I thought it would be, and I"m definitely a "hair" person. I just didn't know anyone with a clippers at the time.
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Lyn- great idea! I will definitely ask at my appt with that surgeon- thanks! I've always had long hair, so I cut it pretty short before chemo started. Like Dara said, it starts just falling out everywhere and it actually helped me be done with it! I know I wondered how it would actually come out (clumps?)- it was a thining for me....lots of hair (I had a lot to start with), but not leaving bald areas...just a huge all over shed. I had my hairdresser shave it, but I still have some stubble in places. I haven't bothered to deal with it, just cover it now. I cried getting my hair cut into a pixie. By the time I had it shaved (on my 50th bday-day, Day 20 from first chemo), I was fine- done at the hair salon. The atmosphere was good....not one tear. I guess chemo preps you for it!
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Ajbclan, was it at about 12 to 14 days for you as well? I need to coordinate with my friend's schedule. I don't want a clogged shower drain or extra hair lying around on top of two heavily coated dogs' contributions, but I don't want to take the plunge prematurely either.
A funny hair story... Knowing I would be bald soon & that my unflattering Costco ID photo was several years old, I stopped at Customer Service for a new photo. The card came today & the photo portion is just a grey block with the tiniest glimpse of my head at the edge. I'm no beauty, but DANG!
Lyn
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