Weekly Taxol group
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Thinking of you, Swimmomma!
#2 down this past week, which was also my 1st week back to full time work following surgery and the infection mess. Definitely tired after the longer days, but that's the biggest thing and I'll take it. As long as the center can schedule the weekly appointments in the early afternoon, I should squeak by with just enough FLMA time by March, 2018 when it resets. Barring any reason to have to take more than 4 hours off. When I see the doctor next, the appt is scheduled in the morning, but it's very early. I'm going to have to return to work that day. I think it should be ok. I fall asleep the minute the Benadryl starts circulating, but when I wake up, I am pretty alert and by the time I get back to the office I should be fully awake.
I am having some ankle swelling, which is worrisome. I've got really skinny bony ankles, but the rest of me has a nice layer of fluff from being so inactive all these weeks and my chest and abdomen are still swollen from surgery. So when I told the nurse I was concerned, she was not, probably because they looked in line with the rest of me. My blood pressure was high, also, 159/101. Between the puffy ankles and the bp, I'm concerned. But I guess since the nurse was not I guess I should notworry?
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Hi everyone! New to this board but have been on the cold cap boards.
Just finished 4 AC's and one taxol. 11 more to go.
I am super tired after my first taxol and have had shooting random pains throughout my body hopefully they won't get worse.
I had some pain with the shots on AC but only the last day of the shots.
Looking forward to reading back to everyone's posts!
MJ
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mjpow, sorry you're here but good to get info. I will have #11 of 12 weekly Taxol and herceptin on Tuesday. 1st few were rough. Lower leg and pelvic pain. Acne, Started getting neuropathy in fingers and toes and the tip of my tongue by #4. Hair shedding so bad I finally buzzed it. The dr. Reduced my taxol by 20% staring with #5 and been relatively side effect free since. Seems to affect everyone a little different. Good luck to you.
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tinker-bell, I had 28 lymph nodes removed at the time of my lumpectomy and am currently in chemotherapy. I was terrified of developing lymphedema. My surgeon strongly recommended that I see a physical therapist specializing in treating breast cancer patients. I've had three sessions and have seen good results. Although I have not had a great deal of fluid retention, the latest measurements show improvement. I also have a compression sleeve which I need to wear when flying and anytime I notice swelling. It was recommended that I also wear it when doing any physical work such as yard work or going to the gym. My advice is to be proactive in prevention!
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thanks DonnaJoan!
Very good to hear being proactive has helped you minimise the risk!
I'm seeing a specialist on Thursday - I just ignored the surgeon and booked it anyway! I think these stupid men would take it more seriously if it was THEIR arm that would swell up and stop them earning a living, GRRR. Fed up of drs, chemo and the whole bang shoot. I can't persuade my onco to lower my dose either although I've been in lots of pain and had neuropathy too. It sounds like US oncos listen more than UK ones?
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Hi All, I'm becoming concerned that I'm getting some numbness on the top of my left foot and up my shin. Anyone else?
I've had pronounced neuropathy in the fingers of my right / dominant hand from very early in my Taxol treatment with lesser issues in my left hand and both feet. I'm over two months out from my final Taxol so fear the neuropathy will be permanent. :-(
Tinker-Bell, yes, be your own advocate!
Also, it looks like an ugly, opportunistic nail fungus has set up shop in the big toe nail that I thought I might lose, just in time for sandal season. I did some research. Even the super expensive prescription products like Jublia have a dismal track record so I guess I'll try tea tree oil or Vicks. Oddly, the dermatologist had diagnosed that nail as having psoriasis, but it cleared completely back to a pink nail after my cancer diagnosis, but before I started chemo. I wish I knew why. Has anyone successfully sent a nail fungus packing? Thanks!
Lyn
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hi everyone. Rant ahead about my jackwagon of an oncologist. Consider yourselves warned.
I had my 3rd treatment last Friday and I'd just like to say that I don't care how handsome he is, my oncologist is a turd. He told me not to do acupuncture anymore because he thought there was a risk infection. But he told me that he "doesn't actually know." After talking with my acupuncturist/ dear friend, I decided my oncologist should shut his pie hole. The fact that Dana Farber, THE Cancer hospital in Boston, offers acupuncture because of how many other medications with worse side effects it can eliminate, makes me believe that I am making the right choice by continuing with my treatment. For those of you who are having a lot of neuropathy symptoms, acupuncture can cure that or prevent it from happening at all. The fact that my oncologist recommended against it because of stupid and misguided beliefs sort of puts a damper on my having any faith in him. Hey, why should he know about non invasive treatments that can greatly help his patients?!
But wait, there's more! He stopped by when I was having chemo on Friday and before I opened my mouth he told me he was just saying hi because he was in the area. (Um, ok, asshole.) Then I told him about symptoms I was having- the acne, the split lips, the fact that my lady parts feel like they're on fire half of the time, etc. He sort of shrugs and says " some of that is expected some of it is probably something other than chemo." And you know, I don't give a rat's ass why it is happening, but this guy is my doctor and should be doing everything to try to make me feel better. My "cancer team" in 2011 was great. Anything I needed or wanted, they were on it. No problems.
But wait, it gets better! I told Dr Asshat that I had previously gotten my pain meds from my oncologist since my normal pain issues are much worse on chemo. He tells me my primary care doc needs to prescribe those because the pain isn't from cancer or chemo. Are you freaking serious, pal?!?
I should note here that I have Crohn's disease and fibromyalgia. The only OTC I can take is tylenol. Because of that and my chronic pain, my doc does give me pain meds. I usually go through about 2 bottles a year, each bottle has 40-50 pills. I've been responsibly managing this for 15 years! I told him that my previous team had handled all the pain meds until I was done with treatment simply because I saw them every week or every other week and it was much easier than me having to make a separate appointment for my other doctor. In fact, my previous team took care of all of my problems instead of saying "oh go to the dermatologist, go to the gynecologist, go to this doctor, that Doctor, and every little Dr you can find because clearly you have nothing better to do."
As he was walking out, my friend said "you know she has Crohn's disease right? She can't take any other pain meds." And he sort of mumbled about opiates not being a reasonable medication for chemotherapy. Uhhhh...then when the hell ARE they appropriate, you stupid little man?
/end doctor rant
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tinker bell, if you couldn't tell my my above rant, I absolutely believe in self advocacy! So many doctors are such egotistical jerks they can't admit that they might not know something or that they could actually be wrong! I had a primary care doc for years who I adored just because she would listen to me and would say "I don't have enough information about that, I will have to get back to you."
VLH, I have no experience with toenail fungus, but according to Pinterest, apple cider vinegar cures pretty much everything (we're all wasting money on this chemo crap! Apple cider vinegar is where it's at!) I actually do have friends that swear by it, though. The worst thing it'll do is make your feet smell a little sour.
Swimmomma, don't have anything to add, just wishing you the best. Please keep us posted
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forgot to say, I don't know if my hair is shedding for real or not, but I feel like I'm leaving a trail everywhere and I need a damned hair cut. So my boyfriend gets to buzz it today. We had to borrow my ex's clippers, which makes it feel like a group effort of guys named Paul who love me. (Yup, same name, same as my dear old dad, too!
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Hi Bulletproof, Regarding your split lips and pain in your "lady parts" I have been using fractionated coconut oil (I bought a 16 oz. bottle on Amazon very reasonably priced.) It has worked amazingly well for me. I also use it on my fingernails and toenails morning and night. Other than a little "bruising" of the nail beds, my nails are healthier and are growing faster than before chemo. I also used it in my nostrils when dry and cracked, and I add a few drops to my daily moisturizer. I have finished my AC treatments and my third Taxol treatment which have seemed to suck all the moisture out of my body!
I have also started weekly acupuncture treatments - mostly for nausea and fatigue. However, I'm also concerned about neuropathy, and my acupuncturist assures me that it will also help prevent and/or treat it. My MO"s answer to my concerns about neuropathy was to advocate prescription drugs to treat the symptoms. I don't want to treat it. I want to prevent it!
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Thanks for the suggestion, Bulletproof. I've been using coconut oil thus far, but know that the acidic effect of vinegar has been mentioned for nail fungus in some articles. It's hardly the end of the world, but one more annoyance, darn it.
Lyn
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It is wonderful to find this topic so that weekly taxol folks can compare! I had four weekly rounds, started losing hair after three but really lost a bunch after four. Then my fifth got canceled due to neuropathy as well as WBC and neutrophils being on the border line. Tomorrow I will have my fifth round. I do acupuncture regularly, take marijuana pills (CBD during the day since that is supposed to fight cancer.... It is not the kind that makes you high) But then at night I take the marijuana pills that have THC because it helps me sleep well. I tried the tonic water today. Not only is it a hard taste to enjoy, but the stuff has a TON of sugar!
I look forward to reading more on here and getting to know some of you!
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finished my 4 rounds of AC today so will start on weekly Taxol for 12 weeks on 5/31. Thanks to those who have posted their experiences so newbies like me can be better informed.
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Susan144 - You might try club soda instead of tonic water that's what I drank and am still drinking. If your mouth is dry, Biotene gel and mouth rinse are both helpful.
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thanks Donna Joan, I ended up getting some kind of hippy baby ointment today. The coconut oil probably would have been cheaper, but whatever, I've got it now. And you'd better believe I was slathering my sore little nostrils with it. I hope the acupuncture is as helpful to you as it has been to me.
I saw my primary care doc today and she told me I needed a new oncologist. I agree. Meanwhile she gave me various ideas to help with various ailments as well as the necessary pain meds. She said she had absolutely no problem giving me those. Yay!!! Sanity!
Susan, I just tried to start a thread about medical marijuana in the pain category. I'm going for my card tomorrow. And looking forward to seeing what the options are for me. Also, I can't imagine that tonic water! Even in the gummy bears I gag on it a little. Brownies on the other hand, whole other story.
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Well, I've made it through 6 of my 12 weekly TH torture sessions. Actually, the infusions aren't bad; just the days following. I had to take a week off because my digestive system was a total mess from one end to the other. It was a wonderful vacation week. I'm still having problems with acid in the system; my poor hiney skin burns from the acid. TMI, I know. Sorry. I started taking L-glutamine, Vit B6, B12 and D, and I'm doing better. I'm eating more than saltine crackers again! I had some minor neuropathy in my foot, but that went away after I started taking the L-glutamine. I'm swearing by the L-glutamine and the ice-bags during the Taxol infusion. I know I'm a wimp because I didn't have AC, but I'm still ready for this to be over.
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Bulletproof, I consulted a doctor about medical marijauna, not for pain but for nausea. He told me that there is a 3 month waiting period before I could get a card. I'll be finished with chemo in three months! I hope that isn't the case when you go to get your card.
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DonnaJoan, I am sorry to hear that your marijuana card would take so long. If you mail in the request, it takes at least three months in Colorado. But if you just do it online, it is automated and I got mine in one day!
The week off was wonderful, my WBC and neutrophils went up! But I also had high BUN and creatnine, which indicates kidney. They asked if I had been dehydrated. I don't think so. But boy am I pouring down water now just to be sure.
The week off and the acupuncture helped the neuropathy, too. Now that I had the treatment, I can feel the tingling coming back.
On another topic: Is there a site for scarves? I think if I knew a few ways to tie them it would be more comfortable than a tight hat or headband or wig!
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Susan144, the best site for scarves that I've found is EBay. Once you decide the shape and size that you like for the style of tying that you prefer, search shape and fiber content (silk, cotton, whatever...). It's been difficult to find what I want but perserverance pays off. I like cotton or challis wool squares, about 24"- 27" for the pirate style that I like. I know a lot of people like silk but my scalp gets too hot and sweaty for it. I've also made a few linen scarves just by cutting handkerchief weight linen a couple of inches larger than I want and then pulling out threads all around to make a 1/2" -1" fringe. These are great for the heat. And very absorbant. Also oversize XL cotton bandanas, if you can find them in soft cotton. Most of the new imports are stiff and nasty. Levi made a really nice one this season that I just love and wear all the time.
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Barclaws had some great suggestions about scarves. Avoid any fabric that is too "slippery" feeling. Polyesters will tend to make your head hotter. I like square scarves which can be folded into a triangle. Fold over about an inch to give a little more texture. I just pull the ends together in the back of my head and use a "pony tail" elastic - bought a whole package of many colors in the dollar store. I have bought several scarves in local thrift stores for $1.00-$2.00. I have wigs but it is already too hot here in AZ for them. DH continues to be very supportive about my "cute" bald head (of course his is too!)
Eight weeks post taxol I still only have peach fuzz and I am concerned that I will have a bald spot even after it grows back (I was getting increasing bald on top even before cancer but somehow I wanted this to be something that was better than "before cancer.")
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Susan, in addition to dehydration, have you perhaps been taking ibuprofen for pain? In prescription strength, Ibuprofen helped my pain so much (encapsulated shoulder, herniated disc, severe Fibromyalgia, neuropathy, blah, blah, blah), but my kidneys protested. :-(
Taco1946, the area of my scalp that was extremely thin before cancer (BC?) is still completely bald to a few sparse hairs and I'm 10 or 11 weeks out from my last Taxol. :-( My lashes have recovered nicely. Interestingly, my brows have returned much darker & coarser with hair appearing in places that I haven't had to tweeze in a decade.
Lyn
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DonnaJoan, THAT'S RIDICULOUS!! I thought that waiting a week was bad. I stand corrected! I don't blame you for not going that route. And for the record, I don't have a problem with weed whether you need it or not. Some people like a beer or a glass of wine at the end of the day. I'm so glad that it's finally getting legalized in so many places.
gg, I just got some overpriced organic healing balm made by the Honest Co. (hippy baby stuff) and I find it is helpful on my tender vittles.
Susan, I'm glad the acupuncture helped. My idiot oncologist is still trying to tell me not to go. Did I mention he's a fucking idiot? I'm not listening. I trust my acupuncturist. He's one of my best friends and his dog Ruby the Chesapeake Bay retriever is my biggest fan.
Lyn and Taco, the first time I lost my hair my friend gave me Nioxin shampoo. It's pricey but supposed to help. You can get the shampoo and scalp treatment on Groupon right now for $32 (I think.) I have been debating if it's worth it or not, but I think I'll get it.
Speaking of which, my boyfriend buzzed my head- I think he messed up part of the side, but oh well.
Then today I rubbed my head over the sink and this happened,
so maybe I'll just shave it down to a 1. I think not using any guide on the clippers will result in my skin breaking out something awful. I can already feel all my sensitive areas on fire. I don't need to help it!
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forgot to mention that I found out that I'm not menopausal yet. Having a hellish period on chemo is super fun
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I have tried Nixon before without much success. I have never been completely bald before but have lost significant hair three times in the past 10 years. Twice following surgery and once due to medication changes. I admit I am more comfortable with no hair instead of trying to cover up the thin places. I know it was wishful thinking that I might actually end up with more hair than I started with but it was my fantasy. Oh well.
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Ah. Good to know. I'm going to talk to my friend who gave it to me before and see her reasoning. My hair grew back fine, it took a little while and for a few months it looked like I had male pattern baldness. But it eventually filled in. A lot more grey than before. I've got no problem dying it though.
My head is getting shaved for real tonight. I'm leaving hair everywhere. I still haven't gone home to get a couple hats and see what I've got for scarves. As long as it doesn't look patchy, bald is beautiful for now. I do find it oddly empowering
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hi everyone. I had my first Taxol last Thursday along with Herceptin. Haven't been feeling too badly thank goodness although I know it is early days 😊. I have been told I need to have a PICC line inserted tomorrow due to "short veins". Anyone on here who can advise on this procedure? I am pretty worried about it as have heard it can be uncomfortable
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GlasgowGirl - I had a PICC line in for 6 months. Getting it in was easy and painless. They do an Xray afterwards to make sure it is in the correct position. It did take a few weeks to get used to it being there though. You can't get the dressing wet so bathing/showering is a challenge. The dressing is changed every week. I went a nursing clinic for that. The PICC line allows them to just attach the chemo drugs to the line without having an IV every week. If you have any questions, let me know!
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The only thing I found disconcerting was when I felt the line near my heart, perhaps when it was being flushed. The technician immediately pulled it back, but it was a weird sensation for a moment. I will say that I much preferred my chemo port because of the ability to shower without worrying about keeping a line dry, but the the port is more complex to insert while the PICC line didn't require any anesthesia and I was able to drive myself to the procedure.
Lyn
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Bravepoint and VLH- thank you so much for your comments! My procedure did not go well unfortunately. I have very narrow veins it appears and the insertion of the PICC line was unsuccessful. I now have a pretty sore arm which is slowly turning black and blue and no PICC line! I now have to either have a PICC line inserted higher up or a portacath inserted. I will be happy with either but until then it's back to heat wraps and finding a vein 😫
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GlasgowGirl - Ouch!! Where did they try to insert the PICC line? Mine was in my upper arm midway between my elbow and shoulder?
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