Starting chemo February 2018
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hi ladies,
Sad to report that after getting thru the AC, my first taxol treatment was worse for me. I did not have neausea like i did on AC but that's where the positives end. I had to ask my MO for something for the bone pain. The Advil did not do a thing to help. And it's different from the Neulasta bone pain. It comes in waves and it can be anywhere. Even my ankles and jaw but mostly knees and legs. So I'm on a low dose rx pain killer. Hope the next 3 taxol treatments are not as bad as the first.
Hope everyone is staying positive . we should all be close to half way done
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moth and jlove- I get a kick out of both of you. You're right if there's ever a Time to be fed up and a little bitter, now is that time. Blogging is a good idea. It wouldn't work for me though I absolutely stay away fron Facebook, tweeting, blogging, Etc. I can't even catch up with my work emails much less explore another venue. LOL
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Hey Butterflylily,
I do know the pain of taxol although I am on docetaxel but the taxotere drugs all have that SE. My MO gave me naproxin and codeine for pain, it usually lessons it but doesn't rid me of it completely. Massage did help and hot baths with epsom salt. I'm just coming out of the pain now which generally last for 3-4 days. Hope yours passes soon, good luck.
indahood
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jo - maybe good old journalling with pen & paper would help you? Or seeing a counsellor? I sometimes think we wait too long before seeing a counsellor, kwim? It helps to unload that stuff with someone, even if it's not affecting you really badly yet.
My friends, I'm going to be here a bit less for a bit because...... I have a new dog! We already have one dog & over the past decade I've had usually 2 or 3 so I've been thinking about adding another one & a perfect one came along. She's an 8 month old black lab x from a remote BC community & we're doing a 2 week trial foster to adopt. She just arrived at my house this morning & I'm SOOOO excited.
(photo removed for privacy
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Butterfly, so sorry taxol is giving you pain. I think once your body gets used to it, it will lessen. I'm on Taxotere and the pain got less with each infusion. I have a lot of arthritis tho so I may just be used to bone pain lol. So my neulasta pod had been weird since she put it on yesterday, every time I bend over it re sticks me and it didn't seem like it stuck me right when she put it on, it goes off here in a few minutes wish me luck if works cause if not I gotta go in thru the ER at the hospital to get a neulasta shot ugh. Hope you are all doing OK, OH and I found a drink I can tolerate that doesn't taste too weird from the chemo here's a pic
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Ps, Congrats on the new doggie Moth, Labs are great dogs, have fun!
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yeah, Moth a new dog. I can't see the picture though it looks like you shared one. Maybe try again.
Jo, you asked what's the difference between Taxol and Taxotere, I also wondered. Here's something that I found that helped me understand the difference:
"The taxanes are both produced by the plants of the genus Taxus (yews). As their name suggests, they were first derived from natural sources, but some have been synthesized artificially. Taxanes include paclitaxel (Taxol) and docetaxel (Taxotere). Paclitaxel was originally derived from the Pacific yew tree. Docetaxel is of the chemotherapy drug class; taxane, and is a semi-synthetic analogue of paclitaxel (Taxol), an extract from the rare Pacific yew tree Taxus brevifolia.[2] Due to scarcity of paclitaxel, extensive research was carried out leading to the formulation of docetaxel, which is extracted from the renewable and readily available European yew tree."
This quote was from another cancer site so I can't tell you where it originated.
Taxol is an older version of the taxane drugs and Taxotere is the semi-synthetic and newer version of the same class of drugs. Why different MO's prescribe one or the other is a mystery to me. I'm going to ask my MO next time I see him, as it interests me.
as far as SE's are concerned the side effects are similar, some say taxotere's SE's are often a bit worse in intensity? BUT...
taxotere (docetaxol) has a risk of permanent hair loss
taxol has a risk of permanent neuropathy
Hope that helps,
I've just finished docetaxol, No neuropathy and I guess time will tell about the hair loss, yikes.
indahood
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indahood - that's interesting what you said about the neuropathy because yesterday I asked the nurse about using ice gloves for hands & feet and she said I don't need it for Taxol, only for Taxotere. I'd never heard that and it seems contrary to what I've been reading.
I tried the pic again. I can see it so hopefully it works now..0 -
Deb..literally the same thing I was gonna write to butterfly about the pain. I also use taxotere and my first infusion the pain was so intense.. in my jaw.. everywhere. Its lessened a lot since although still get the aches and pains. Hopefully that stands true for you with taxol and it lessons for you the next round.
Indahood..let us know what your MO says about the difference.. I often wondered that since they seem so related.
Moth..congrats on doggy!💙
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Moth sweet dog, hope you are a perfect for each other. A new puppy can be a lot of work but so much fun also. I have already told my team I will be icing during taxol it is something that they are considering providing as now so many ask about it. I was told the opposite that you where by my MO that taxol is the one to try icing with and not the newer one. As long as it does not really get in the way of the nurses doing their jobs I think they should just let us do what we want. It is our bodies that are being poisoned and even if the results is only in our heads if we feel better let us be. Just like I never got a single mouth sore to date and I really think it is because I found and read an article about a dentist who found eating cottage cheese prevented them. I have since ate a small amount of cottage cheese every day. It is cheap and for me it seems to have worked. Yes if someone else asked for help with mouth sores I would tell them about the cottage cheese and a couple have actually found it works for them also.
I did get some news on the new genetic testing I was given. As most on here know I tested negative for the BRCA genes. However due to other factors like this being my second cancer I had endometrial cancer and the fact that so many aunts, uncles, cousins, both of my parents, and siblings have had cancers ranging from colon cancers to my baby brother dieing of brain cancer, my MO has strongly felt that something was happening with my family. Well she was right I tested positive for Lynch Syndrome. I can now look at all the cancers that have torn my family to bits took so many from us to soon and know that it was more than likely hereditary. They are finding more and more Lynch Cancers by the day it seems and they include almost all the cancers that have been seen in my family. It means all my children have a 50 percent chance of having the syndrome and if they do their children have a 50 percent chance of having it. Like women choosing to have their breasts removed if the test BRCA positive women who test positive for Lynch are being advised to get hysterectomies once they feel they want no more children. They are now saying any one but especially women who have had any type of uterine cancers who then is diagnosed with any type of second cancer be tested for Lynch Syndrome of if you have any type of cancer and a 1st cousin, sibling, or parent with one the lynch cancers to be tested. I am asking those on this forum who may fall into these catagories to be tested if not for your self for your children. Knowing about the risk could save your child's life.
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Just saw the new guidelines for breast cancer screening from the American College of Radiology, published March 2018
They're recommending breast MRI for us if we have dense tissue or diagnosed by age 50."Breast MRI is also recommended for women with personal histories of breast cancer and dense tissue, or those diagnosed by age 50."
Full text here https://doi.org/10.1016/j.jacr.2017.11.034
summary write up at DenseBreast Info is here: http://densebreast-info.org/higherthanaveragerisk....
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got my last AC this Friday. Amazing how platelets can increase in 2 days from 90 to 190. I got reduced dose AC and I believe I feel it. For the first time I am able to function normally the day after chemo. I went to see my son playing soccer, weather is beautiful here in Virginia. Then I went grocery shopping. Now at home ready to start my first jigsaw puzzle out of 3.
Have a great weekend all!
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moth-thanks for this information on MRI. I've spoken with my doctors about this who tell me in BC, I will not be eligible for yearly MRI because that's the way the health care system is set up. They all acknowledge that it is appropriate because of my age, family history, and dense breasts, but say even if they order it it's unlikely the radiologist will agree to do it for screening purposes. Have you discussed this with your medical team? I'm happy to pay privately if necessary but let me know if you find a doctor that can get MRI screening in the BC healthcare system
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had my fourth chemo on Thursday not feeling too bad today little bit of bone pain from the neulasta but tolerable haven't started with the big D yet hoping I don't but I have every other time so far. Hope you February girls are doing okay this weekend my chemo numbers keep getting smaller it's a good thing
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Hi all,
I'm happy to say I received my last treatment on Thursday. Sleeping lots and feeling mild nausea per usual. Expecting extreme fatigue on Tuesday to Thursday given my past history. Made it through 3 taxol and 4AC despite some pretty dark days, allergic reaction, and illness along the way. Thanks for all the support and valuable information you've shared here! Good luck to all of you completing chemo, if I can do it I know you can too!
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congratulations Walden! Just get through those last few days of feeling crappy then on to everyday getting better than the next.
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Happy sunday ladies. Just checking in to say hi.
indihood, deb, jlove - thanks for the support! Sure is reassuring that maybe Taxol treatments 2, 3 and 4 will give me less bone pain than Taxol 1. My MO put me on narcotic pain reliever and that's the only thing that worked. Thankfully, the pain did subside after day 5 or 6. I have my treatments every 2 weeks so I'm not looking forward to round 2 next friday but with what you're saying, maybe it won't be as bad bone pain wise.
On icing- what do you ladies recommend to do the icing? As soon as the bone pain subsided some, i started having pain in my nails. It's so weird. I banged my thumb nail on my coffee table. Normally, that would have been mild pain but this time it felt really painful! This Taxol is really kicking my butt. All nails on my hands and feet hurt. Would the icing help? Can i just buy dry ice and bring that to the treatment center to keep my hands and feet it? Can't believe I survived AC to have Taxol give me so much trouble....
hope everybone has a peaceful sunday, thanks for all the suggestions!
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Butterflylily, glad you're feeling a bit better. I was on taxotere but mostly the same SE's. I had ziplock bags of ice for both feet and hands during the treatment. The nurses provided it. I didn't have any issues with my pain in my nails but discolouration and a weird split in the middle of my toenail. The other thing that I did was get my nails done with Gel polish before each treatment to make them thicker and more protected. (not sure if that did anything, but they looked nice so there was that.)
My MO gave me naproxin and codeine for pain relief. it worked somewhat, took the edge off but never took the pain away.
Goodluck, You got this!
indahood
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Walden - yes, I don't expect MSP to cover annual breast MRI right now. In the cancer agency's management guidelines they have some very narrow criteria for when an MRI would be covered and it doesn't seem to cover survivor surveillance. I plan to pay privately (Medray does my mammos and they have breast MRI) unless the doctors convince me that these guidelines are wrong or too aggressively biased in favour of MRI.
Personally, I think I'm more comfortable with the increased risk of a false positive than the risk of missing something.0 -
Butterfly lilly so sorry that taxol is causing you pain. That is one of my fears to make through AC and then the 12 taxols are even worse. I bought the Natracure cold therapy socks from Amazon for my feet they have gel packs in them. For my hands I am thinking about just using zip lock bags of ice and wrap them and my hands in a towel. You could just use large zip lock bags for you feet as well. I saw a lady that brought a tub like you get from the hospitals here for a sponge bath. She put bags of ice in the bottom put her feet in then ice on top. I have a small cooler that I will use dry ice to keep everything frozen for as long as possible. You only need to ice during the actual taxol part so have them give you a couple of minutes notice when your premeds will be finished to get your ice ready. It is cheap to do and even if it does not help you will know your tried everything you could to make things easier for yourself.
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Indahood, Amburt - thank you for the icing suggestions! I will certainly try the zip lock bags with ice for the treatment on Friday. Hope it tends off some of the weird and awful funger and toenail pain. Hugs!
Oh, and I'm also secretly hoping my hair will start growing on taxol but maybe its just wishful thinking 😡
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Ladies, i just heard from my MO who was checking in on my Taxol bone pain. I also told her about the pain in my fingernails and toenails. She said that's more common with Taxotere but not so much with Taxol and she didn't think the ice would help in my case. She has decided to reduce my dose by a smidge..
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Hi all,
Hope you are all doing well with your SE this week. I’m getting ready for my mastectomy surgery without reconstruction in the first week of May. Would love to hear from others what recovery is like. I understand initial pain is generally not to bad. Anyone have ongoing pain, muscles, nerves, etc. Any tips re bras for initial recovery. I will be doing mastectomy on one side with D size left breast to support on the other
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Well this has been a rough few days. Last round theside effects were much better but I think it’s just taking a toll and I overall just feel so “blah”. I had to go to the ER again last night - I’ve had a fever the fourth day every round - but fortunately labs were good again and it seems it’s just going to happen each time.
Walden- I had a bilateral mastectomy. My pain was pretty bad but I think a lot of that was my fault for not taking the recommendation to stay on top of the pain seriously enough. I kept trying to do it without too many meds and it didn’t go well the first couple of weeks. However, about 2 weeks after surgery I felt so much better and kept improving a lot from there. I’ve healed well and my only ongoing pain is from my tissue expanders. I had a couple of bras I used initially- it mostly mattered that the clasp was in front. I got one from Ana Ono that I liked because it wasn’t Velcro like the others (the Velcro irritated my skin). After a few weeks I switched to mostly Genie bras for support and I would just step into them and pull them up.
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Jlove- thanks and sorry to just now respond. I don’t have my surgery scheduled yet but they said likely late June. I meet with my PS in May to figure out everything. My fills are don so, other than finishing chemo and being nervous, I’m ready!!
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Walden - I had a mastectomy but I also had tissue expander put in at the same time. I don't remember having much pain. Some discomfort from the TE in the beginning but that settled after a few days. Are you going to have drains? Drains were the biggest hassle for me. I did need something for the pain on those. I used something called the Elizabeth bra which offers built in rings to hold the drains. It's $60 online. Best of luck! You can do it!
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moth-yay! Puppy! I think animals definitely make this process easier on the soul. Also agree with you about being comfortable with risk of false positive on MRI. I'd like to err on the side of caution therefore I too plan on paying out of pocket for them going forward if my insurance won't cover for monitoring. My MO doesn't seem keen on doing a lot of tests for recurrence but that is not going to work for me I'm going to need to be doing something for my own sanity.
22fight- I know exactly what you mean about feeling shut down with the positive spin from friends/family. I've got one sister-in-law that will really listen to me and not expect the "rah-rah" (she lost a child and although that is very different she understands the need to not be subliminally told to get over something) but everyone else is either unwilling/unable to hear what I really want them to. When people make a remark about me beating it I have to fight the urge to say, "Or I could be dead in 7yrs" And I'm not nihilistic, just extremely pragmatic. Hope and fight for the best but still plan for the worst. I'm one of the ones that deals in statistics and struggles with Let go and let God.
Walden-I had one sided mastectomy in January without immediate reconstruction. Initial pain wasn't that bad because I had a pain pump. The drains were a pain in the ass. Since then I've had random nerve pains and it's weird feeling the tightness from having a flat chest. Also phantom pains in a nipple that no longer exists. My remaining breast is a D also and it has been difficult to find something that will support it and still cover the mastectomy side without riding up or putting too much pressure where the lymph nodes were removed. I've been through several kinds of sports bras and I have not found an ideal solution. I'm supposed to go get fitted for a mastectomy bra and prosthesis but haven't gotten around to it. I think that will be the best route but I've been lazy and relying on hiding under winter clothes still.
Taxol has definitely been treating me better than AC. My neuropathy has been very mild. My fingernails are sore like I hit my finger with a hammer and the sides of thumbs and index fingers feel like they've been burned slightly. I've also developed what I think is a mild form of psoriasis on both elbows. I had something similar as a child as a reaction to a medication and I think this is the same kind of thing, nurse said it wasn't the traditional "taxol rash" so she wasn't concerned-just keep on eye on it. Itchy and annoying but not important. I'm also fortunate that I don't have what I'd call real bone pain although my knees have been hurting a little bit.
My anemia is still getting worse but at a slower rate. Down to 9.2 but I'm actually feeling better so I've learned I can't judge how I'm feeling vs. how I'm actually doing. Trying to stay away from knives and pointy things so I don't hurt myself... or stab anyone else. ha ha
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Hi ladies! Day #8 after first taxol. For me, Taxol has been easier than AC. No nausea and manageable fatigue. I do have muscle and joint pain - especially on my legs. But it's not too intense. My nails have started getting a weird discoloration but feel ok.
Icing hands & feet - I got the NatraCure cold therapy socks and extra replacement gel packs for the feet. I took a small cooler with ice where I kept the replacement get packs. I exchanged them halfway through infusion. For my hands, I put on latex gloves and placed my hands inside ziplock bags filled with ice. It was super cold, especially since I was using the cold cap, but I had my heating blanket which helped. I asked the nurse who said icing wasnt necessary. Then I asked the MO who said to was a good idea to ice. Conflicting answers so I opted to ice.
Happy/Bad feelings - I mostly try to stay positive around family & friends. They have all done so much to help me, I want them to feel like they are making me happy. I also don't think they would understand everything that I'm going through. To help with my emotional needs I've done two things that Have helped me tremendously: 1. Join this chat group. Being able to go through this difficult journey with you all has been a blessing. You know exactly what I’m going through. It’s great to have a place I can go to and be understood. 2. I am seeing a therapist. I highly recommend it. I go there every two weeks and vent away. She guides me through productive sessions. This is the other place I can be 100% honest.
Lollote & Moth - congrats on finishing AC!! I hope Taxol is easier for you guys!
Walden - congrats on being done!! That’s such great news!!! 👍🎉 before chemo I had he bilateral mastectomy surgery. I did opt for reconstructive surgery and have tissues expanders until I finish chemo. I’m not sure if my experience will help but here it is. My recovery went well. I slept on a recliner chair the first few weeks and couldn’t lift weight for the same amount of time. I put everything I needed in lower cabinets, closet hangers. You can’t reach up too high at first. I wore button up shirts and bras with front clasp. Again because you can’t lift your arms or reach on your back. But pain was minimal and mostly treated with ibiprophen (a high prescription dosage). The thing I didn’t like at all were the drains. They were uncomfortable and hurt a bit . I bought an a drainage pouch for mastectomy drains on amazon. These were a life saver as they held the drains and kept them from getting pulled or tugged. The other issue is that I got some cording as result of the lymph node removals. I had to do some physical therapy - walking the wall as te doctor called it - at home for a couple months. It’s all gone now. Basically standing in front of a wall and using my fingers to “walk” up the wall to the point I couldn’t reach up. Slowly I could get up higher and higher. Overall, I think it was much easier than dealing with AC chemo.
Butterfly - I’m sorry Taxol has been so difficult for you! I hope the meds will help and that future infusions will be easier.
Amburt - I too have been eating cottage cheese every day. I think it helps! The other thing i do is rinse with a baking soda & salt after every meals I haven’t gotten any mouth sores. Thanks for the info on Lynch disease. I’m sorry your family has this and it’s affected you all so much.
Thanks everyone for all the compliments on the wig. I wore it to a kids birthday party. I was nervous, but it worked out great. I even got compliments on my "hair cut".
Hug
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its great to know all of you are doing great with ur taxol than AC .. tmrw is my first docetaxol infusion im keepIng fingers crossed hoping it will be alright since i had really tough time with AC.:)
Even im having anemia going at a smaller rate .. but i ate spinach for 3 days and my blood work did show .5 increase so maybe that could help .. will know if it did work long term from tomorrow’s blood work
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Hello ladies,
Thanks for sharing your experience with the taxol. It has helped me. I'll have it in about 10 days from now and I am planning to use cold pack to "ice" my fingers and toes. A lower dose of AC has been a huge difference for me. I am not feeling bad like the previous round and could probably go to work if I had still my office job from Malaysia. I haven't go for a walk yet but I find every excuse no to such as the weather is bad, it is cold, etc.
Thank you too for sharing your experiences post surgery. This will be the next step for me but I have 12 weeks of taxol to go thru first. I'll start to freak out in July😋
I wish you all an uneventful week!
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