Weekly Taxol group
Comments
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VLH, I agree with Roofcat. If you are triple negative, you may receive a robust chemo regimine. You may feel sick, and you will more than likely feel loopy because of the Benedryl. Maybe you could get rides or use Uber.
Roofcat, how many infusions have you had? My side effects are very similar to yours. I just started getting the leg cramps, and my feet hurt.
Here is a list of supplements and other items I use so far to ease SE and make myself more comfortable. I have had 5 Taxol+Herceptin Infusions.
10 mg Celexa
Homemade Bone Broth
Probiotic
10 g Glutamine Powder (x3)
Vit D3
L-lysine (mouth sores)
Tissue and Ayr (nose gel)
25 mg Trazadone (sleep aid)
Magnesium
Potassium (if needed)
Vit B Complex
Fish Oil (pills)
Epsom Salt (weekly soak in the tub)
Refresh Plus Eye Drops
Imodium (if needed)
Brian Joseph Brow and Lash Gel
Silk Pillowcase (just shaved my head)
Biotene Mouth Wash
Humidifier
Beautycounter Face Oil
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Hi melpub, welcome. So you said you breastfed three kids and that didn't help you? Wow, and I read somewhere breastfeeding supposed to reduce BC like 60-70%.
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Houston, I breastfed three kids, too, for 18 months, 18 months and 15 months respectively. Didn't help me either!
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Hello. Anyone have tips for the horrific dry skin. I am 46 and chemo has given me really thin, weird skin. I have lost muscle mass and fat, so that contributes. This is just a bump in the road. OOOhh and my flopectomy is officially September 30.
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Hi everyone. I'm relatively new here - I've been reading and learning a lot from all of you, which has been wonderful. It's helped me deal (somewhat!) with diagnosis and treatment. So thank you!
I'm wondering if most everyone has a port? I am doing the 12x weekly Taxol/Herceptin regimen. I'm trying to avoid a port but my doctor/nurses are suggesting it. I have only one usable vein in one arm - but it's a good one! Maybe I'm over-reacting and being overly negative about having the port? Does it bother you in terms of how it feels and how it looks?
Thanks again!
Sending good thoughts and best wishes to all of you.
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Bird-of-light, the MO said I won't have Benadryl for the four AC treatments, but appreciate the input for the Taxol portion.
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willa216 - I have a port. I'm really glad I have it. Sitting for 2-3 hours with an infusion going in every week and you barley notice it: I find having a cannula in very uncomfortable.
It doesn't bother me in the least, except when my daughter bangs into it if she is on my lap. I didn't like it at all for the first month or two, but I have got used to it.
Eventually I hope to be able to get it out, but only so that I don't have to keep getting it flushed.0 -
Willa, I'm with BlueKoala on the por. While I hated the "getting it in" part, I've grown to LUV my port! I don't luv the way it looks (super gross actually) but I DO luv the fact that I have peace of mind every time they stick that needle in that it won't hurt and it will work smoothly. And I don't have to worry about poison escaping into my tissue around the IV.
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Willa, I also love my port! With Herceptin, we will have infusions for a year. A year equals a lot of pokes! My Breast Surgeon recommended I have her put mine in under anesthesia, and she said she would use a light silicone port that is less visual and much lighter than the metal ports that the ROs tend to use. She showed me both types, and the silicone port was lighter and smaller. I was sold 👍, and I was happy to be under when she put it in.
Katjadvm, my skin is also super dry! When I bathe in Epsom salt, I add a few tablespoons of coconut or olive oil to my bath. For my face, I use Beautycounter products (cleanser, eye cream, face lotion, body lotion, and face oil). I use the hydrating face oil twice a day. The product line is luxurious and free of all chemicals and things bad for you. I love it! I feel like I am pampering myself.
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Good morning to everyone on the board. Timely discussion on ports here. I was never really offered an option to NOT get a port, I guess because of the weekly Taxol and herceptin for a year. plus, I have horrendously poor peripheral access. But . . . here I am sitting today waiting to see if they can get me in for a vascular dye test prior to Taxol infusion. I have routinely developed an area of phlebitis about 1-2 inches along the port cannula where it inserts into the jugular after each of 3 rounds of taxol. Now they have to make sure there are no crimps, leaks or other defects. Hooray - just one more thing to worry about. But, what can you do.
Also, my hair is continuing to fall out at an alarming rate and my scalp feels weird when the shower spray hits my head or the wind blows through my hair. So I'm pretty sure it's goodbye to hair in the coming week.
By the way, bird-of-light, I'm on my 4th round of Taxol today if they can get the port issue straightened out.
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Going in for #10 of 12 today! #9 was the first dose I experienced neuropathy in my feet. Shooting, stabbing prickles when I stood up. It showed up day 3, was a little less day 4 and still less still on day 5 (pretty much gone). The weird part is, on the 2 days I forgot to take my last dose of glutamine, it was back! I guess that stuff really DOES help.
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Willa: I love my port. Super easy at infusions and barely noticeable in between.
Bird of light: thanks for the info.
Ruby slips: i too started having neuropathy at dose 9 and if I miss a dose of glutamine it is much worse. Definitely makes a big difference. Also added lipoid acid and vitamins B6 along with massage.
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katjadvm; bird-of-light; roofcat ; bluekoala and rubyslips: Thank you all for your thoughts regarding the port. Much appreciated. I'm still resisting, which seems less than wise given the infusion protocol. I'm going to need to do #2 on Friday without a port and then will likely get it next week.
roofcat: hope your phlebitis and port "inspection" went well today and you're feeling good about moving forward. You're right, it is always one more thing to worry about. I'm learning that at each step of the way.
It's good to see all your positive comments about B-6 and glutamine for neuropathy. I'm doing that but didn't get a ton of support by my MO, which I thought was a little odd. Do you ice, also?
Best wishes to all -
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To clarify, is local anesthesia an option for port "installation"? I got nauseous after both my lumpectomies even though they have me three anti-nausea drugs. For perspective, I've had Synvisc injections in my knees, cortisone injections in my hip, a basal cell carcinoma excised, am not freaked out about needles and didn't have any major problems with my core needle biopsy or sentinel node pre-operative injection of tracers and dye.
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I had weekly taxol/herceptin #4 today. All of my blood counts were low today but good enough for chemo. They said I will be more tired this time. My hemoglobin was 9.2. They said if it falls below a 7 I will need a transfusion. Any ideas on how to get it up?
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Roofcat, so sorry you are having issues with your port. I hope it worked out today. I started getting some hair loss around day 17. It progressively worsened, so Monday I finally shaved it. I went from hair down my back to shoulder length, then chin length, a pixie, and now bald. I hated saying goodbye, but it looked terribly thin, dull, and lifeless. I have such a small head that I now look like a frail old man. I bought a wig, hair band, scarves, and hats. From what I have read on the hair, hair, hair board, Herceptin slows hair growth, 😞 so I am planning for at least 6 months to a year of covering-up. However, it feels good to wear nothing. I bought a silk pillowcase that feels heavenly on my scalp.
VLH, I have heard of people getting ports under local anesthesia. Ask your MO. I get sick from anesthesia too, but my surgeon gives me a small patch that goes behind my ear that works wonders! I also get sent home with suppositories for nausea as well. Both stop me from getting sick.
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Oh, gosh, it must be tough to lose such long locks. :-( Even though I went short years ago, my hair has gotten so thin in front that I do a female combover. Even a bad hair day is better than a no hair day, right? The MO said a cold cap is $2,500 so I'm hoping I have a good head shape since I'm always hot & may want to go nekkid much of the time. One of the few aspects of my appearance I still like are my eyebrows so wish those would survive unscathed.
I got the patch for the second surgery, but still was queasy in recovery. It didn't last long, but I would rather be in pain than nauseous. I hope that doesn't bode ill for the chemo.
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Cris's8325, mine was low in red blood cells with Taxol in the beginning weeks. I determined to bring it up by eating lots of spinach everyday, dark leafy green vegetables, tofu, bean, cereals. People say chicken liver and red meat help but I try to stay away from them. Mine hemoglobin went from 9.27,to 10..and then 11.00 today so I know I'm doing it right. Good luck to you.
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VLH, if you've been through a MX there's no need to fear the port. I have it put on under conscious sedition so I was aware of what Dr. Is doing, just don't feel anything. I don't like to be put under general anesthesia unless necessary.
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Greetings all! I haven't been here in a few days. It was a very busy week at work, and when I would get home I'd have time to eat and then get myself to bed early. Really trying to get lots of rest.
My week 1 SEs were very minor, for which I feel truly blessed. Mostly mild fatigue and some headaches. I also had a little chest tightness. But it's also been terribly humid and it's allergy season. So it's not uncommon for me to feel that way this time of year. Thinking the headaches could also be related to my sinuses.
Decided since I am going to lose my hair that I'd get my mohawk. Did it today. I actually like the way it feels. The look is kind of cute from the sides but totally unimpressive from the front. At least now if it comes out in clumps I don't think I'll freak out so much. All my coworkers are pretty stoked to see it, so I guess I'll spike it up on Monday instead of wearing a hat.
Bird-of-Light - Thought it was best to answer your question about art therapy with this info from the American Art Therapy Association: "Art therapy is a mental health profession in which clients, facilitated by the art therapist, use art media, the creative process, and the resulting artwork to explore their feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. A goal in art therapy is to improve or restore a client's functioning and his or her sense of personal well-being." I had no idea our cancer center had an Art Therapist, but I'm sure glad they do!
roofcat - So glad your hair didn't blow off. That would have been a pain to clean up. I love your choice of future hair colors. I always said I'd get a purple mohawk, but I figure the mohawk is enough. Not sure the MO wants me to dye anything these days. Sorry that new SEs keep cropping up. Having had a good first week, I'm kind of nervous to see what's next. While I'd love to soar through this easy-peasy, I'm certainly not expecting that.
willa216 - I have to say that I had a horrible first 48 hours after the port insertion. It felt like the doc hit me in the neck with a baseball bat. It also felt uncomfortable to have this foreign body just beneath my collarbone. I had it done a week before my first infusion and am so glad that I had that time to heal. I just cannot imagine using the port a day or two after surgery. Now that I've had it 2 weeks, though, it is not that bad. I'm no longer bruised and I can actually have some pressure against it without going insane. I couldn't even think about a bra strap or anything pressing on it for the first 7-10 days. That's just my experience, though. And I must say that I would not want to use the veins on the same arm week after week. You have to consider that it's blood draws AND infusion. I think the port is worth it. (Though I'll be throwing a party the day they take it out!) My MO is also not supportive of Glutamine, and after doing some of my own research definitely decided to forego it. There are some studies that show contraindications for its use, and I figure if I'm going to go through chemo I want to give it the best possibility for being totally effective.
VLH - I believe some docs will do port insertions using a local with sedation. For me the sedation still makes me fall asleep, so I'm not sure if that would help you. Also, some docs just won't do it that way.
Well, off to pack my back for tomorrow. Bring on the pickle juice and frozen grapes!
Sending lots of love and well wishes to each of you.0 -
Houston2016, I had two lumpectomies, but not an MX. I had light sedation in the form of pills (Xanax, I think?) to help with claustrophobia when I had an MRI. No problem with feeling sick. The second lumpectomy procedure was shorter than the first with different anesthesia and I wasn't as sick. I think part of the problem it's that even if my blood sugar doesn't read low, if I can't eat every few hours, I tend to feel icky. Interestingly, the anesthesiologist said that breast surgery tends to provoke more nausea than abdominal or orthopedic surgeon.
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VLH - In my area, local anesthesia (lidocaine) with conscious sedation is pretty much the norm for port insertion. Conscious sedation consisting of fentanyl and versed - but if you are really against any kind of IV sedation, then you might be able to do without it. I was aware of the whole procedure but felt no pain, just pressure. As fireheart43 mentioned, I also found the first 3 days or so after insertion to be quite painful, but the port is a vein saver for sure.
I have had an issue with phlebitis or some sort of inflammatory process in the area surrounding the jugular vein insertion during the first 3 rounds of chemo, but fortunately a dye study showed no problem with the port itself, so the inflammation is still a mystery. It shows up after the steroids wear off and is usually almost resolved as the next Wednesday rolls around. My oncologist, her PA, and the the radiologist say this is about the first time they've ever seen this without there being a pinpoint leak or some such thing in the port cannula. Leave it to me to be a "mystery". This last time, I took serial pictures on my cell phone to document the process so that my oncologist and PA didn't think it was crazy! The radiologist also was very interested in the pictures. This time the PA told me to try icing the area come about Friday, my "crash day" when the steroids wear off. I will definitely try her suggestion.
Bird-of-light and willa216, thanks for the concern. I was able to get my chemo Wednesday AFTER everyone and their brother signed off on the interventional radiology report of the dye study. I spent 0845 until 1630 at the Cancer Ctr - talk about a long day. So sorry you had to part with shoulder-length hair Bird-of-light. Mine has been cut short for years now so it will be less drastic. I have an appointment to get a buzz cut on Monday.
fireheart43: Glad you made it through your 1st week. I really have so much admiration for you women who are going through all this while working, caring for children, etc. etc. Where do you get the strength? You should post before and after pics of your mohawk from the side for us
. BTW. I think the chest tightness is pretty common due to the cardiotoxic effects of herceptin. I also feel the same thing.cris8325: Re: blood counts - so far the biggest effect the Taxol has had is on my hemoglobin, but I was fortunate to start out with a hemoglobin of around 14.5, practically as high as some males! And I didn't get blasted with adriamycin and cytoxan first like you did. My hemoglobin remained essentially the same between rounds #2 and #3. I think if your bone marrow is responding normally to the drop in hemoglobin that it will eventually plateau out, maybe around the 9.2 that you had this last time. Also, as Houston2016 said, it is important to maintain that good nutrition with iron containing foods, if possible, to help your bone marrow along.
Tonight is my "up all night with steroids before the crash" night, but I'll stop for now. Pleasant dreams. Sending light and positive energy to you all for a good week, minimal side effects, and being one week closer to each of our personal goals. (( ❤️ ))
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Roofcat - I love your positive attitude! Especially, after a long day at the cancer enter. It is funny, with help from 25 mg of Trazadone, I can sleep the night of my infusion. Maybe the Benadryl is still active, but today, Friday, is my steroid high day,and it kicks in stronger about 5pm. I'm usually taking a bath at around midnight to relax and hope for sleep around 2 am. I wonder if you could keep the port inflammation down if you asked for a light steroid to take at home after the infusion wears off.
Chris 8325 - my hemoglobin hasn't been down too low, but my neutrophils have. On #4 I was at .8 and my MO said at .5, he would make make me skip a week. I made some homemade bone broth and drink a large cup each morning with a probiotic. My numbers have increase each week (1.1 #5 and 1.3 #6 - yesterday). I boil the bones for 18 hours in the crock pot with veggies and get a great gelatinous broth. You can find recipes online. I used a chicken carcass, 3 beef soup bones, a pork knuckle, and part of a thigh bone - all grass fed from a local farm. I figured since neutrophils are made in the bone marrow, the bone broth would help.
VLH - maybe your breast surgeon can put in your port using a local anesthesia and giving you a Valium. My port did not bruise, nor does it doesn't bother me much. I had my port put in on Tuesday and had chemo two days later on Thursday. It was a little sore, but I have learned to really glob on the lidocaine. I am really glad my breast surgeon put it in, because being a skilled surgeon, she was very delicate and my scarring is minimal. She also ordered a lighter, smaller, rounder port. I have had other women at the MO office ask me about my port because it doesn't stick out as much as their's. If you can get your surgeon to do it, I think it is worth asking.
Fireheart - congratulations on get getting round one done! At six infusions, I think treatment flies by faster than I thought. I am not saying it is a cakewalk, because it is challenging, and we all seem to face different and similar side effects. I have found that staying busy either at home, work, or outdoors, helps me keep my mind off the side effects. In addition, I make sure I get lots of hugs and time with my loved ones (my Vizla get the most cuddle time.) Thank you for explaining about art therapy. I think I will look into something like that in my area. You are very lucky to have it in your cancer center. Good luck. Keep up the fight!
Bird
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Hi all, I am starting Taxol next week for 12 weeks after completing 4 rounds of AC. I am sure I will have lots of questions and it sounds like this is a really good, supportive group with lots of knowledge.
I've been following the thread for awhile trying to get prepared. I will go back and look but what are folks doing to keep their nails healthy? I have things to prepare for neuropathy, keeping my blood levels up, etc but haven't seen a lot of folks share about their nails. I'm paranoid of them falling out and getting infected.
Sorry if you've already covered this a lot, it's a lot to read so I could have missed it.
You are all so strong and it's inspiring how you are all supporting each other and keeping good spirits!
Lindsay
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Thanks for the info, Roofcat. I don't know that I've had the fentanyl / versed combo. I think there was an IV sedative involved when I had a spinal injection for a herniated disc. No nausea, but I don't know what drug(s) were used. Did the phlebitis / inflammation present as swelling or how did you know there was a problem?
Related to Lindzanne's comment, it's there any credible evidence that the icing helps or only anecdotal? I'm especially worried about my tootsies and icing them shouldn't be a problem since I'll be seated anyway. Bring unable to use my hands seems more awkward since it precludes reading. I know this is the weekly Taxol page, but did those of you doing AC cycles ice with those or only with the taxane segment? The MO said the AC cycles will take about 1 3/4 hours. Is the Taxol similar in length? (I haven't been to chemo class yet.)
Also, I don't plan to work during treatment since my part-time job doesn't allow for last minute cancellations and I don't know how the chemo will affect me. I think I recall that Day 3 is usually the worst for many, right? If working a M-F job, Thursday seems the most popular choice as it affords recovery over the weekend. Since that's not a factor for me, does it make sense to have treatment on, say, Monday or Tuesday so my MO will be in the office in case there is a problem? I've been frustrated by my surgeon only being in the suburban office near me one day per week. I thought it would be a "one and done" surgery, but with the seromas and infection, there's been a lot more follow-up than expected. I'm glad the MO will be more geographically desirable and is affiliated with a hospital that isn't on a huge campus in an urban area an hour away.
Thanks, Ladies!
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They received the results back from my genetic testing. They tested 79 genes. All negative. They do not know why I got cancer. But they said it will not be "passed" down to my girls. I was wondering if these results affect recurrence rate in any way. Not really sure what all it means. Am happy to know I do not carry the gene though.
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Here is a study printed in the Clinical Journal of Oncology about icing your hands and feet to prevent nail toxicity and neuropathy.
http://www.elastogel.com/images/stories/pdf/case_s...
Also, here is a study in Clinical Oncology on Glutamine reducing neuropathy.
http://www.sciencedirect.com/science/article/pii/S...
I ice and take Glutamine. So far, so good. I did start to get arthritis pain in my hands and feet when the steroid wears off, which I ignore and keep moving! Arthralgia and myalgia are possible side effects of Taxol.
Bird
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Hi everyone! I need help! I just finished week 10 of Taxol and Herceptin, 2 more weeks to go! I developed a terrible rash after week 8 on both arms and hands, it is driving me crazy. Herceptin was held this past week, for doctor believed the rash was caused by herceptin, but nope.. it is the taxol. It is almost unbearable, arms on fire and itch horrible. Doctor gave me steroid cream but it does nothing to relieve the pain. Hopefully someone on here has some advice.
Thanks so much,
CTay
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Home from round #2. Had my blood draw at 8:15 and infusion wasn't scheduled until 10. So I got some oatmeal at the cancer center cafe and a delicious antioxidant drink. Had brought my own fruit. Ate, caught up on the discussion boards, and relaxed. Moved over to the waiting area at the infusion center and had a patient near me who was coughing. All coughs and sneezes make me paranoid these days. I want to save up any immunity I have to keep going strong at my job for a school district. When the guy was called to go in, I finally looked and saw he didn't have a mask on. Perhaps whatever is causing his cough isn't contagious. But I know I would wear one just for the peace of mind of patients there with me. They have all those things throughout the campus. Ugh! Was trying not to judge, but it ticked me off. Dude! You have cancer! You're one of us! Think! -OK. Rant over.-
They changed my Benedryl from 15 mins to 30. That really helped lessen the intensity of the buzz I had gotten last week. Much more gradual. Still felt loopy, but not to the point of imbalance or total mental fog. Sucked on some frozen grapes during Taxol. Noticed that my extremities (toes, fingers, nose) get cold during that part. They gave me the Herceptin at a faster rate. I was nervous about that as I felt like it gave me a headache last week. But I got through with no issues. Might have helped that the art therapist was there and we were yakking and painting decorative stones. When she is there I feel so relaxed. It's like talking to a good friend. Such a blessing.
Red cells were a bit low. Going to be "pumping some iron" this week.
Thanks for those articles, Bird. Definitely going to be reading them and talking with my MO more about the icing.
Lindzanne - Have to admit I haven't really prepared for the nail issue, though it is one that freaks me out too. That and the neuropathy since I work with my hands and am on my feet a lot. Hoping someone will jump in with some good advice. I could use it too.
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Ctay - While I haven't had a reaction to chemo meds, I once had hives for 10 months straight. We first treated with antihistamines and other OTCs (Benedryl, Zyrtec, Zantac). Then we moved on to Prednisone. When that was no longer helpful, we tried 2 other drugs I just can't recall. Finally ended up using a drug called Dapsone which did the trick. I have no idea about drug interactions with your chemo regimen, but I have already brought this up with my MO and INSISTED that she keep my allergist in the loop and consider her part of my treatment team. First sign of a rash, I'll be getting in touch with both the MO & allergist. I would highly recommend that you talk to your MO about consulting with an allergist, especially if you can locate one that has an expertise or interest in treating hives.
Oh, yeah, steroid creams were no match for the hives and rash I had. Push to find out more. Sadly you're going to have to be your own advocate here. Specialists sometimes know very little to nothing about what is cutting edge (or even protocol) in other specialties. And if you do consult with an allergist, follow up to make sure the two docs are communicating.
Will be praying for you. I truly do feel your pain.
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