Weekly Taxol group
Comments
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Margun - my employer is aware of my diagnosis and supportive. They have set it up so I can do work from home, however there are things that I have to do at work.
The really odd thing is that the other SW here was also diagnosed with BC a couple of months prior to my diagnosis. She had surgery and rad therapy. We have also had a third person diagnosed. I guess if you work in an industry dominated by women that kind of thing is bound to happen
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Well put ladies. I am a "half-glass-full" kind of person too. I do get angry and scared, but I try to redirect my anxiety to focus on what I have to do right now. I told my job about my cancer, and my supervisor has been super supportive and helpful. Co-workers have also been extremely supportive as well. They will hopefully never need to know what I really am going through.
loiswb-I had two things that were said to me that I didn't appreciate. One was the ON nurse complimenting my long hair when I was obviously going to start chemo and lose it all (I said, "thanks we'll see how long I have it"). The second was my daughters' friend's mom telling me that Breast Cancer is similar to "having the flu"... um pretty sure that is not the case. I never corrected, but I don't think I'll ever forget. People are oblivious, but admittedly so was I, before my diagnosis.
I remember being in the stage of not knowing, and I would love to be there again! But there is no going back. I also try to remember that everyone has their own battles, and with the chances of everyone getting some type of cancer being at 40%, people will be either caring for someone they love or have cancer themselves. Life has never been fair, so I figure I just have to take what I have and do the best that I can.
1 more to go!!!
btw, I talked to ON about Carbo, and he tried to just focus on how I should be lucky I don't have Inflammatory Breast Cancer, because it doesn't respond to 4 different types of chemo including carbo. My appointment was rushed because it was overlapping with my infusion, and I could tell I was wasting my time. I told him that I wanted to make sure that I was doing everything I could to reduce the risk of recurrence, and again he tried to talk about inflammatory breast cancer again. He slightly mentioned the toxicity too, but I think he made a mistake and realized it. I don't think there is anything I can do at this point since I only have one more to go. I will likely be changing doctor's after my surgery.
Edited as it was my daughter's friends' mom, not her 7 year old friend
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notdefined - I'm sorry that your doctor is not listening to you. You deserve to have his undivided attention and for him to understand what you are saying. He is not going through this treatment - you are. He is not facing possible recurrence - you are. You have legitimate concerns and he should address them
My NP is somewhat like that. She didn't think that I would experience nausea so she didn't prescribe anything. She also didn't go over the SE of the possible remedy for the nausea (like headaches) or else i wouldn't have filled the prescription. She also didn't talk to me about my low WBC, what we would do if it was low next week.
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Hello,
I just finished dense Taxol and AC. Started having numbness and tingling on my finger tips. I tried B6 and B12 but not help. Any advice to relieve this and how long is it going to last?
I appreciate your response.
Thanks,
Cutie
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Hi Cutie,
I have not finished my taxol and am doing low dose/weekly, but from what I have seen here, the symptoms last varying lengths of time, but many see improvement within a few weeks. I would continue the B vitamins, it can't hurt anything and might help. I would also let your providers know if you haven't and see what they recommend.
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Made it through Taxol #11. Just 1 more to go! I requested the Benadryl in capsule form instead of IV and what a difference. I actually slept last night. It was only 5 hrs but so much better than no sleep at all.
My hair is growing back. The peach fuzz that was coming in white is now filling in darker in the back and temple areas. The top of my head is basically white fuzz and shiny scalp. My lashes are completely gone. I had no idea how devastating that would be but wow it makes me look so sick. I've tried self adhesive lashes last weekend when I went out to dinner and they worked ok so I ordered 5 pair from Amazon. My brows are gone too but the bangs on my wig make them less noticeable. My wig is definitely showing signs of wear so I'm only wearing now when I'm going out. I ordered a Fuck Cancer baseball cap to wear until I feel comfortable going without anything in public. I wish I was good with scarves but I just can't seem to pull that off.
My taste is returning! I've been able to taste food over the past week or so and it's so great to expand my diet.
To all you ladies in CA, I hope you're safe and haven't experienced any damage from the earthquake. I can't imagine how scary that was.
Hoping everyone has an amazing weekend with little to no side effects. We got this ladies.
🤗🤗
Dawn
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Just finished Taxol #3 yesterday with no bad side effects except last night, I was making a lot of noisy gassy toots when walking. Embarrassing, but I don't seem to have much control over them. I've always been so constipated that I was kind of looking forward to the possible se of a little diarrhea, but, of course, no one wants the explosive diarrhea that's been discussed and this seemed to be a sign of that.
I used the Cryomax Cold Packs that are supposed to be good for 8 hours, and I was very disappointed. They didn't seem to stay freezing cold long enough. The directions say to use them for 20 min, then refreeze for 20 min, then reuse, etc, to get 8 hours. Needing them for 2 hours solid, so I don't think they are the best choice for this. Perhaps I can use bags of ice for 20 min at a time, while the packs are back in my ice chest. How did those of you who used them get longer cold times?
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DawnS1962, thank you for the self tanner recommendation. I enjoy reading your posts. Only one left!
DogMomRunner, I'm sorry about your WBC.
Notdefined, I hope your daughter's friend's mom doesn't get the bc "flu". Wow, just wow. My surgery plan is similar to yours, except I'm leaning towards a BMX with DIEP.
My third Taxol was a breeze. I'm grateful.
I hope everyone enjoys the weekend.
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BAMR, I too, am disappointed with the cryomax packs. I like the natracure socks. My infusion nurse said she has a patient that uses the socks on her hands, too.
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HappyAnyway, glad you're third one was easy, too! Were you able to use the socks the whole time without replacements? I used a long gel pack that I've had from the past that seemed to work okay, but would be interested in socks if they last. I'm thinking that a frozen lunch box insert might work as an exchange for the cryomax after 20 minutes so that I follow the directions to refreeze the packs for my hands. My Taxol infusion is longer than most. We have to go slowly to prevent the reaction I had the first time.
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Yes, surprisingly the socks lasted for the entire hour. I actually took them off for a bit because they were so cold. I really need to put them on during the pre meds and leave them on for a while afterwards, according to what I've read on BCO.
I'm glad that you didn't have a bad reaction this time.
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BAMAR, I've used a small cooler filled with ice for my hands since I started Taxol. Cheap and it lasts the whole time. I don't ice my feet. Tried once but very uncomfortable. No real issues with numbness in toes. Some pins and needles now but not bad
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Thanks, ladies. It helps so much to hear what others are doing successfully. Love this forum!
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Dawn-it is good to know that my hair coming out from my head will get darker. Now it is completely white. EvenMy mother in low is not like that.
Anyone knows when eventually will be safe to colour it?
I like to know if we must to put sun screen even we are going under sun for short period of time? What special prévoyions you take when you go beaches? I heard than when under chemo we must be very careful with sun, I do not know if the same sensitivity is true when we are on'y Under herceptin or even after herceptin is completed
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Margun, I am curious about the sun sensitivity when on Herceptin alone too? Right now I cover up as much skin as possible when outside, which is usually only in late afternoon...big hat, sun glasses, sleeves, and sun screen.
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DogMomRunner-I'm sorry you are having issues with your medical team too. It is frustrating when our care team isn't really trying to put themselves in our shoes.
Dawn-yay for no. 11! I have some white fuzz, but no hair coming in that is dark brown. I would be thrilled to see that on my head! So glad it is happening for you, and so glad your taste buds are coming back! Chemo really makes me appreciate the little things I took for granted when I wasn't sick. I hear you on the eyelashes. It is the official "I've got cancer" look. I have been doing what DogMomRunner was doing with the eyeliner, but it still isn't the same as with fake eyelashes. I also just ordered a replacement wig, as my current one has become harsh. It doesn't even feel like hair anymore. I read on here, that the non-real hair ones only last 4-6 months, and it's been 6 months.
HappyAnyway-Glad number 3 went smooth! I have been going back and forth on having a full mastectomy versus just the one side with the cancer. Do you mind sharing why you are having both done? My surgeon made me feel like having just the one side was excessive, but I don't care. I had two small areas on my other side that I had to biopsy via MRI because they did not show up on the ultrasound, and thankfully they came back as benign. But I thought about removing that side too, so I didn't have to worry about it as much.
Margun-I think I read somewhere that your skin is extra sensitive with chemo. I have been in the sun, but I have dark skin and haven't had any reactions. I use 50 spf sunscreen, and I make sure to put it on my head.
BAMR-I am just using plain ice in the barf bags at the center. They do the job for me.
I am exhausted from the fatigue from number 11. It isn't stopping me from doing things, but boy is it hard to get out of bed in the morning! The neuropathy seems to be the same. My fingernails are starting to hurt a little. It's weird because AC made my finger nail beds turn purple. At the beginning of Taxol, I showed the nurse, and she said that would continue during Taxol. Only it didn't. The "purple bruising" has moved to the top of my nails, and my bottom nail beds are white again. Did anyone else have that? I'm glad it didn't stay that way.
5 days to go. I am crawling towards the finish line!
Have a great weekend everyone! Oh and I live in Cali, but thankfully on the other side. I didn't feel the quake, but some friends took pictures of their pool water swaying. So weird that it was felt all the way over here.
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Yay Dawn! One more to go. I’m glad your hair is coming back. Love the baseball cap. I saw a shirt that reads “my oncologist does my hair”. Might have to get that.
BAMR - it’s odd about the cold packs. Mine seem to last the entire taxol infusion. I put my feet (with cotton socks) inside the cover. I am thinking of adding a bead freezer pack on top for this next treatment because my left big toe is a bit numb.
HappyAnyway - congrats on #3. I thought about the socks but their website said they didn’t last more than 20-30 minutes. And I didn’t think about the socks on my hands - I was looking for gloves.
Margun and ByUmom2 - I am wearing a bandanna (alone if sun is not out) or that and a brimmed hat if it’s sunny. So far I have not been out bareheaded. My boss, who is bald, said he uses at least 70 SPF in his head.
notdefined - 5 days woo hoo! I’m sorry about your fingernails. I hope that resolves ok. Glad you’re not near the quake area. Wildfires, earthquakes and drought, you Cali people really go through it sometimes.
I’m tired here in the east coast but the Herceptin SE are a bit easier than the taxol ones. I’ll hopefully be back on the taxol depending on what the white count is next week. Yippee :
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Notdefined, I have extremely dense, fibrocystic breasts. I'm only 44 and triple negative. My MO said I need radiation either way. He recommends a mastectomy due to the 1:00 position, close to my chest wall. He and my BS said that they support whatever I choose. Since my cancer is aggressive, I want to be more aggressive. As far as intimacy goes, I will miss them, but am prepared for the sacrifice. I breastfed my three girls for a grand total of four and a half years. They served their purpose. I will grieve them, undoubtedly, but feel that it's the right decision for me.
Yes, my nails looked bruised from AC. My MO said that I won't lose them. It's good to know that yours are growing out.
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DogMomRunner, I read that on Amazon, too. Maybe my feet are more sensitive. I'm not sure. I would buy them again. The Cryomax, I'm not very happy with. I feel like they aren't cold enough outside of the cover, but too cold if I put my hands inside of the cover.
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HappyAnyway-I am 43 (will be 44 in Aug). I have dense breasts and am triple negative too, but I don't know how severe the denseness is. I just saw a Tedtalk about how important it is to know to what degree of denseness our breasts are. I didn't know that was important or that there was even a scale, but I intend to find out. Thanks for sharing. I still am on the fence about having them both done, and will talk to my surgeon about it again. It is useless to talk to my ON about it.
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Notedefined, my wife is 56 TNBC and was BRCA2 positive so our oncologist stated a DMX is a must, along with ovaries and Fallopian tubes. As with Happyanyway, they served their purpose and fed our 2 children over 30 yrs ago!! The MO and geneticist stated that having the DMX would greatly reduce the chance of recurrence (so to BRCA2) from somewhere like 45% to less than 5%? We like those odds much better. Ovaries will be done when this mess is over!! God bless and happy Saturday!!
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Yay Dawn about #11!!
For sunscreen I use spf 70 on my head. I still am getting some color but my head but it's not burning!!
I hope all you ladies are having a great day!!
~Katie💗
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Thank you for sharing jrominger. I think if I were BRCA positive, the surgeon would have recommended the same. He waited until my genetic tests came back before suggesting I have a lumpectomy. I have two aunts on my mom's side that have triple negative, so I wouldn't be surprised if there is an undiscovered gene related to BC in my genes. The surgeon told me that my chances of recurrence are the same with lumpectomy v. mastectomy, and it seems like conflicting information to me. Why would the surgeon recommend full mastectomy if I had the gene, if it doesn't reduce my chance of recurrence? That is partly why I have elected to have a mastectomy on the BC side, but I was still thinking about just getting rid of everything. I just want to know that I did everything that I could to reduce the risk recurrence.
TBH my size is small, and I've never been happy with the way they look. If I had the funds I probably would have had a boob job. That being said, I know that I would lose sensation which is something I would have to adjust to.
It helps to know how others are coming to their decisions. I appreciate you sharing.
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notdefined- I am triple positive grade3. My BS and MO both suggested lumpectomy. They told me there will not be really difference in recurrence (only1 percent). Some people here with the same diagnosis chose bmx. Some ladies here I remember being disappointed not being able to get lumpectomy due to the position of the tumour. It is personal and so difficult decision and so many contradictory info. So I am confused too and there is not much time left to take decision.
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notdefined and Margun, I agree it's a personal and difficult decision especially when experiencing chemo brain. There's just so much going on and it's such a big decision.
Have you both met with your plastic surgeons yet?
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Dawn- I met my PS. He will shape the breast that is going lumpectomy and will conduct some breast reduction on the other one to make the same size. But still, despite my surgeon"s reassurance, I am not sure the lumpectomy is as safe a mx or bmx
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re the icepacks, the only way I found to make it work is to bring a cooler with lots of rigid prefrozen packs to keep my gel pack ones cold. I only used each gel pack for about 20-30 minutes and then swapped to fresh (still frozen) ones from the cooler.
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I won't be finished with chemo until September. I'm just trying to work my way through each process, one at a time.
I will not have immediate reconstruction, either. I will have rads after BMX. I will have reconstruction approximately six months later. I am trying to prepare my husband. Heck, I'm still trying to prepare myself.
There are certainly no easy choices.
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I used the naturacure socks and they seemed to stay cold for the whole hour. I did not do it during the premeds or after. I wish I had gotten a second pair for my hands. The stupid mitts I got were very bulky and did not stay cold very long but I used them because I paid for them.
My nails turned brown from the AC at the bases and just this last week they look much better after I cut them again. Itoo have a bit of darker hair starting at temples. I am wishing it would go faster.
I'm done!!! #12 in the books yesterday! Still have to go for a stupid neupogen on Monday and then don't see MO till 7/23 to get rest of plan (RT)
I was not really given an option of mx as it was initially thought the tumor very small and grade 1, hormone ++ etc, and have had 2 surgeries already so I am not chiming into the surgery discussion. I can imagine it is a difficult decision so good luck to everyone with that on your horizon.
I
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Loiswb, congratulations!
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