Weekly Taxol group
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Thank you for your reply BlueKoala. I got profuse apologies from the nursing supervisor and assurances that nurse won't come near me. Also that I will get my Ativan and on time. Since my anxiety symptoms of tight chest, trouble breathing mimic possible infusion side effects, this is very important, toherwise they will stop infusion again. (But hopefully not just sit there saying they can't do anything like that nurse did).
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Thanks for your reply Labscientist. I have been very disapointed in several things, and very angry about several others, where I am going. Nobody has the time to take with me. I have a back up MO I wish I had chosen and I will probably try to switch over.
(I called the HELP line at my oncology center, a massive impersonal place, and they callled in a anti emetic but too late to get toniight... drinking ginger infused water!) And others don't understand why someone going through cancer and this stuff with treatment might get angry! Others really just don't get it. Thanks.
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Ah I see Houstin, so some MOs find this is the case with weekly Taxol. Interesting to hear. But I agree, if I wanted it just in case (I live alone, rural area, have to work etc) I can't imagine why I couldn't get it as a back-up! It ain't morphine!
Thanks...
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viktoryak - My MO is the one who suggested taking melatonin to help me sleep after the steroids. He also gave me a script for sleeping pills, but I'm trying to avoid more drugs. The melatonin is enough at the moment.
He did reduce the steroids from 10 to 8 after I begged. He also halved the benadryl, but added Reactine. I'm on the small side and usually take the minimal dose or child dose for drugs.
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Eleanora: I am so glad you are getting some responses that are more appropriate. Patient care is the number one reason for anyone to be in healthcare, or it should be the number one focus. If you don't like people or want to help and care for them, why the heck would you even want to work in healthcare??? It sounds like you are moving towards better care and I hope so. Sorry to get on a soap box, being in healthcare myself, and in the laboratory, the emphasis for me has always been the patient behind the specimen. What if that person was my sister, or mom or son? Would I want someone to take the best care, be accurate to be sure that my loved one gets the correct care based on the correct lab result? AS cancer patients, we should be cared for by the infusion staff because really they are there to make sure our fight goes well, and we survive. Its sad to me that not everyone sees it this way.
OOOPS, soap boxing again, sorry. I will be praying for you, that your care will improve amazingly and that you can even switch to a new provider or infusion center that's better! blessings, A
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Hello friends,
I went in for Taxol #5 (I think...chemo brain?) today and found out the MO got my message about my neuropathy but wanted me to do a full dose this week, then reevaluate. I wasn't too keen on that idea (I am ER+ HER-, and chemo isn't as effective with my subgroup, so weighing the risks and benefits is different than for TN and HER+ tumors) I took some time to think about it, the nurse conferred with the covering MO, and he suggested 20% reduced dose. I decided to go with that and meet with my MO next week. The nurse was very careful to leave the decision with me (could also have skipped this week) and I let her know that was smart b/c (as she knows) I need all the info I can get and to feel as if I am in control of my body. (and spirit. I refuse appts with the nurse supervisor b/c she's a b*#*h, but I just say that we don't communicate well.) The nurse also said she's seen people just walk out--I get that.
I will prepare for homemade icing of hands and feet next Thursday. I'll continue to research taxol and chemo in general for ER+HER- women and ask very specific questions next week. Here is one study--it's from 2006, I like to find newer studies, or responses to this one. MJS, I am thrilled that you got an excellent response from chemo, same stats as I have. I am neoadjuvant also. Surgery (MX) late August, rads to follow. I have 2 + nodes (dx by fine needle biopsy...I imagine there could be more). So great you are doing so well.
http://jama.jamanetwork.com/article.aspx?articleid...
I was willing to do the Taxol, and did AC, and deal with crappy SEs, but neuropathy could be permanent and I have it starting already. It really scares me. Thanks all for your helpful and encouraging posts.
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reflect- I haven't experienced neuropathy so far, but I've read vitamin B12 or L-glutamine may help. For nail issues, I've been using black nail polish and rubbing vitamin E oil on my nail beds. I've also read that mild exercise will help (still working on that myself).
Here's the study on execise reducing CIPN
http://abstracts.asco.org/176/AbstView_176_170470.html
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Good morning to all, so far it's been one day since Taxol (Thursday) I feel great no SE yet. I asked for bags of ice for my hands and feet and a blanket during my infusion and the staff was ready to accommodate me right away. I was reading your posts so I want to avoid ahead of the neuropathy but my OC didn't mention it to me. I think these discussions board are very helpful and most of time you get advice from those who share your pain and experience. I was allowed to increase my vitamin D to 5000 which I think is important. I have history of low D. I rarely went outside when I worked and that is something I need to change now bc of cancer. I also taking slow FE supplement since my RBC is low. I don't want to be anemic but OC advised me to eat red meat to increase my iron but OMG I read red meat can increase cancer cells proliferation!! I was never fond of beef or pork but have been avoided since BC. The other thing is those premeds they are giving me I might ask them to lower the Decadron and Zofran but I see no reason for the Benadryl or Pepcid. I will continue with icing my hands and feet it helps! I kind of wonder about chemo brain and the fact that my WBC is low without Neulasta, wonder if I should even return to work (getting infection). I would love to hear from all your thoughts, ideas.
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Houston - if you don't like red meat, there are other sources of iron. Oysters, duck, spinach, unsulphured blackstrap molasses, dark chocolate, etc. Those are my favorite, though I do like red meat.
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ladies. There is a group for those starting taxol in June 2016. It might be easier to follow along on a newer thread and be in sync with each other's progress. Good luck
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Houston2016: I had my 4th taxol this past Tues. Just comments about premeds: the benedryl is to avoid anaphylactic type reactions from the solvent in the taxol. That a big problem with this chemo. the pepsid is for the terrible burning stomach reflux that it gives to many of us, if you are avoiding that, whoot whoot, what a blessing! I take Zantac twice a day to control it, but then I had reflux some before I started chemo. Good on you for doing your homework RE: effectiveness of treatment for your specific type of cancer.
I am off work at the request of my MO at least until the end of July, although I think he would prefer for all of chemo adn rads too. Mostly for staying healthy, not exposed to germy coworkers and the germ filled enviornent of a hospital lab. I am thankful for supportive supervisors and manager, and for disability payments. Chemo is a war or attrition, we have to outlast the enemy and survive the battle to kill off all the cancer. Go, fight, win!
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I had my third taxol today. I started glutamine powder 10 grams three times daily and a B complex with the encouragement of my MO. After the first taxol I had some nail discoloration, tingling hands and feet and sore finger and toe tips. Since taking the glutamine daily those side effects have almost completely diminished. Seeking Health has a good glutamine powder that you can get on amazon and is a reliable company. Hope this helps.
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Katjadvm -My nutritionist said to take it for 4 days after infusion. Are you doing more?
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labscientist mom- Thanks for your feedback on the premeds. Now I can see why Benadryl is needed but it shouldn't be a one size fits all. It may be helpful to get the meds in the first Taxol but if I don't have any reactions then it shouldn't. I asked my OC nurse that I'd like to have lower dose of Decadron and Zofran for the next IV. As I speak now I started to have some numbness or soreness on my fingers and toes just like most of you have said. Just hope it doesn't get worse.
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Hi Kajdvm- I too started to have soreness on my toes as well. Do I need to have prescription for the glutamine? Can I purchase'it at whole foods store? Thanks everybody.
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Finished Taxol #10 yesterday 2 more to go. Slept all night last night which helps big time. My doctor reduced my steroid last week after I talked about the heartburn and how bad it was and the lack of sleep I was having all weekend. looking forward to finishing and having 3 weeks off and then starting 4 weeks of rads.
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Great idea! I have been looking for something. Like this too. Just finished my second of 12. Had shooting pains in my joints on days 2 & 3 after the treatment, mostly at night. Weird facial numbness on the skin around my mouth, but that's it. Worried about the numbness because of the horror stories about permanency, but other than that it's been ok. Oh - and pain in thumb nails and black streak in right thumb nail but it's painted over now so I don't know how it looks now
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Houston, re glutamine,look back on page 207 of this thread for a post by OAJ with a photo of Glutasolv packets you can buy on Amazon. The packets are 15 mg which is the dosage you need twice a day. My Walgreens didn't carry them but would have ordered them for me. Like OAJ, I was told to take for four days after each taxol. My chemo nurse gave me several of these packets but when I ran out I bought a tub of glutamine powder at GNC.
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Icing , B-12, L-Glutimine and link: (Reflect, MJS1266): I didn't ice first Taxol (I have now done 8 of 12), and had some tingling in toes and hands. I was already (for a long time) taking B-12 and general B suppelements. Started icing --and taking 20-20bg daily, divided into 2-3 doses, of L-Glutamin powder (NOW Foods, Amazon) and never again have had that problem.
Here is my solution,https://www.amazon.com/gp/product/B019LOCWLK/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1 and it's not messy and pretty cheap: cool packs that insert into a velco wrap around holder (perfect for an ankle or wrist later)--I use them for toes and fingers, and put extra cool pack under bottom of my feet. I have my "helper" (and can do it myself if need be change them out about every 20 minutes to stay very cold. Start 15 mins before Taxol and end 15 mins. after. My MO allows hand and foot icing and suggests it, due to the newer studies, but she doesn't like cold capping , esp. for HER2 positive folks like me, due to brain met possibilities, though she won't prevent it.
Note to others who have followed my rare side effect journey: Icing has nothing to do with preventing my rare (lucky me) side effect of the hand-foot syndrome. Sadly...it's not preventable for one who is going to get it.
Nausea (Eleonora): I get Zofran with chemo infusion, take 8 mg Zofran every 12 hours thereafter (so, Day of infusion, plus 2 full days after, and sometimes one morning after that.) I need it. I did this two weeks, then on third, tried to stop Zofran after 24 hours,, and within 2 hours past my 12 hour dose time, was nauseated again. I have learned from surgeries, etc. that I am one of those folks who suffers nausea. I insist--and have for years--on the best nausea meds possible for any procedure or anything with possibility of nausea. I don't like taking meds unless I have to, but I like nausea and vomiting less! And I tried to see if I could get away with less, but I can't. Routinely, at my med center, a major Calif. HMO type, they will give you one Zofran pre-med to take orally for a Taxol infusion, and that's it, but if you need it, you will have many at home aids and Zofran by infusion too. The nurses don't want you sick, and neither do the docs. Most people don't get nausea with Taxol--but some of us do.
Steroids: (Houston 2016): Others have mentioned the why of steroids and Benadryl (allergic reaction). I had to do the steroids IV the first week, and had home steroids prescribed to take. I never took the home steroids, and had a strong flushing reaction to the IV steroids, but worse, like others, had horrible, debilitating heartburn...Had to take double (at MO's direction) of prescription Prilosec-type stuff, and also Zantac (works by different mechanism) and Tums for breakthrough. These caused other GI issues (diarrhea)....So, we decided to try no steroids with infusion #2 and see how it went. It went just fine.
I did stick with the IV Benadryl (it makes me totally loopy and high and I don't really like it, and I don't really sleep either--just loopy, tired, bored because I can't read, so an entertaining chemo friends is good...). I also have to take Benadryl every 6 hours for the first 48-72 hours (2-3 days) post chemo (while most gets out of your system). And I take a Zyrtec over the counter once a day the whole time. When I don't do this, I do get a Taxol rash on my arms. Oddly, the steroids didn't prevent this, because I got that same rash the first week when I only had Benadryl in infusion and didn't take it at home. So for me, the Benadryl is a key component.
Update/Info for Rare Taxol Side Effect of Hand-Foot Syndrome for anyone who needs info : I update for those who have offered me support (I thank you) and for any future Taxol user who ends up with this super rare (for Taxol) chemo side effect which started for me after chemo #6, and was identified in the week after 6--so right away, by my MO-- but I was part of this process by paying attention. Keep at it ladies, and don't let things slide in our cancer and healing journeys! I'm doing okay adjusting to bed life until hopefully no later than August 1! (Last chemo scheduled for around mid-July.) Keywords: Burning feet, itching feet, red bottom foot, heel pain, red fingertip, red finger pad, pink fingertips, finger pain , blister, red feet.
I had to find much of this hand-foot info in other (like Stage IV) forums on this site and other Google searches, because it is super rare--but possible and has happened before me! (Viszla, did you have this too?) It is possible with Taxol. It is from the vessels (mostly small capillaries) in your feet and hands leaking chemo. Because of the particular composition of the structure of the palm and hand skin and sweat gland system, this leakage causes damage. If it continues, it can lead to internal ulcers, bad swelling and external blisters, and of course infection is a huge risk. Dry, cracked heels make it worse. I'm thankful that at least I have baby-soft feet!
Here is a basic article link (show your MO if she/she is not knowledgeable and you have what seems to be this problem! http://www.cancer.net/navigating-cancer-care/side-... Symptoms are listed here, too. Other journal articles say you can't prevent it with icing of feet, and I was already doing that anyway...this article says icing does help if this is caused from Taxol, but it hasn't for me.
My MO identified this from my description but this was the first time she's ever seen it with Taxol. It happened in one week: chemo Friday, feet seemed fine, went hiking Sun morning (did notice then my heels hurt like bone bruises, and had when I walked around house before hiking that morning..by Sun night feet burned ,itched horribly, and were painful and red on bottoms .Stayed off them naturally on Mon and Tues (they really hurt), they improved and redness went away, walked flatlands on Wed, they flared up again badly that night. With some chemos, 40% of people will get it this but not Taxol. To any future suffered: you are not alone! I thought it was the neuropathy acting up...but it is totally different.
Symptoms I had: 1) pain like bone bruises on your feet where they get the most pressure, or fingertip pads (I don't use my hands much except for computer work, and have not been cooking much at all--husband has been doing it all --but I did notice issues when I tried to open a jar, etc..--slight pain deep, like in heels.); 2) redness on pressure points on bottom of feet and palms and fingertips, but can make whole foot inflamed on top too; 3) begins with tingling/itching and proceeds to hot burning pain.
What to do/Treatment: You must not put pressure on your feet. If you stay completely off your feet (as in bed rest, walks only to bathroom several times a day, and maybe once to car and back, and use a wheelchair or push chair for in a store, restaurant, going to med appts etc), you can minimize the damage because there is no pressure being applied. The chemo has leaked but basically you aren't grinding it into your tissue in the foot and palm areas ( this was a description I read elsewhere.) When I say stay off the feet, I also mean I need to use a pillow under calves during the day because having my heels on the bed, even propped up lying down, puts too much pressure on them and they stay moderately painful and somewhat red. It is something about the structure of the skin/sweat glands in the bottom of the foot and palm areas that makes this side effect happen there. You can find info on this via Google.
The only known "cure" is to stop chemo. My Taxol has been reduced by 10%. I was disappointed, but it is better than having to stop...and MO said it shouldn't reduce efficacy much. One other "cure" of the symptoms is an anti-oxidant cream developed in Europe, delivered through the skin with nanoparticles, but it is not available here. See the Stage IV website for more info; one man was trying to compound a home version himself. My MO had me get a non-prescription cream with 10% urea and 4% AHA in it and to use it twice a day, which i do. Just keeps the feet from getting dried out and gets rid of dead skin if you have it. I really don't (remember, I have baby feet and well taken care of! Small plus..)
Here is a photo of the mild beginning (redness a few days later after some walking got almost as bad as the cherry color on the bedding in photo), so anyone in the future will know what to look for before things get out of hand. I do realize some people have red feet in general, but I do not. The first is the almost normal foot (after I'd had the first flare up but it went back to "normal."
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Hello everyone, this is my third day into first Taxol. I felt fine yesterday thought I feel same today. Was I wrong! I got up at 7 am feeling aches in my upper and lower back, my fingers and toes sore (fingers more so). I tried soak fingers with Epsom salt, help somewhat. But throughout the day I got stomach upset mild which makes me don't want to eat, the aches now on my thigh, I feel tired want to lay down. I read the post about taking B12 so I take B complex and it seemed to help with the aches. I have to check with my OC about glutamine so I haven't try it. My question is would the neuropathy continues throughout the week and the stomach upset caused by Taxol continues? I also noticed I have frequent urination and more than average bowels. Didn't happen with AC. Any suggestions from those who completed the Taxol? Thanks!
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Zoziana, thank you so much for the icing info and the link. How many ice packs do you need, to make sure they are cold enough? I might make fleece covers with velcro wraps myself (I have all that stuff at home) and use ziplock bags of ice inside the fleece bags. Although your solution is reasonably priced!
I hope your hand foot problem resolves soon. So unfair to have cancer and all these "side" effects too.
Hi Houston, I've just finished 5/12 Taxol but I think you must tell your MO about sore fingers/toes and any other SEs you notice. I wouldn't wait on the neuropathy. My dose was reduced and the neuropathy has reduced also. I'll do icing as recommended by Zoziana (above). My experience with Taxol is very similar--Day 2 I feel pretty good, day 3 the aches begin. Always fatigued. Good luck, hang in there.
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lots of questions for you.
Which days do you take the glutomine and howmuch? How about the B6 and B12? Anything else I should talk to my MO about?
Icing -- how are you doing it? I saw some about ice packs. How often do you change them. For those who use home made, how do you make them?
Sorry for all the questions, I start next Monday and want to be as prepared as possible.
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Houston: Yes, those Taxol symptoms are common. It's very good to drink 100 oz. of water/liquid a day in first 48 hours, my nurses and MO say, to help flush the system. When I didn't drink enough one day (day 3, and I had walked a lot and it was warm), I got what felt like a UTI, but with tons of water over next 2 hours, symptoms totally went away and never returned. All your cells are being attacked, and some killed (kill those cancer dells!), the fastest growing ones, which include the lining of the gut...and thus, diarrhea and loose and frequent stools can occur. As for stomach upset, if you take Zofran, it often causes constipation, so for me, that evens things out a bit.
Reflect: I have 16 total ice packs. This allows about 4 fresh packs during the Taxol process--it is one hour Taxol for me, though first time was 90 minutes to see if I had allergic reaction. So, one hour plus 15 min before and after is 90 mins. I change the packs about every 20 mins. One pack comes with each velcro Coolpack thing, and I bought extra of the 4 x 12 size. You could definitely sew your own, but I don't sew (wish I did, though!) I sometimes did put a pack on bottom of foot too, to see if it helped at all with the hand-foot syndrome, but it didn't. You can also use a bag of frozen peas under feet and that would be easier, I think, to keep in place; my MO suggested peas for hands and toes as the cheapest suggestion--but you will need a number of them because they thaw quickly. The nurses at my chemo center are so impressed with my packs (so much less messy than hands in bags of ice, and easier and possible to manage by yourself if need be...--that they took pictures and asked if they could bring several patients by to see them.
NJNancy: I take the L-glutamine powder (NOW foods, Amazon, order now and you can get it by Mon. I bet!) , and B-12 every day (it's good for gut health too), 20-30 mg total, in two or three doses. This is the recommended amount I found to be most common when checking around. As for B-12, I routinely take 2000 mg. per day. It's a great supplement for brain health, and also, totally keeps the mosquitos away from you (the reason I originally started taking it--just when I would be heading to mosquito areas like visiting relatives in Florida, etc-way back in 2008...). It is great at keeping nerves functioning properly and many elderly are deficient in it. As for the other B vitamins, I take a general B-complex, which has 200 additional mgs of B-12 in it. Obviously, check with your MO about anything you take, but these were fine. Also, if you don't take Vitamin D, you may want to think about that too. Here's a link re levels to seek; most people need supplements to get to the over 50 range which is now recognized at "sufficient". http://www.ncbi.nlm.nih.gov/pmc/articles/PMC428831...
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HUZZAH, blamoms, only TWO left!! Whoot, whoot!
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Houston2016: yes body aches and reflux/burning insides after the steroids wear off. Drink, drink, and DRINK some more. Herbal tea, water with additive to make it taste a bit nicer, or water/ little juice/ coconut water for electrolytes. Taxol effects your gut, watch out for constipation, eat fresh/dried fruit and LOTS OF PROTEIN. also if you eat too much of something, it can tip you over into the opposite (diarrhea) just for fun! the other symptom for me that goes with the body aches is blasted brain, like you spent all day in the sun.
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Thanks so much for posting all this information! I'm going out now to get some more gels and ace bandages for my infusion tomorrow. I was crying for an hour because my left hand and part of arm was feeling numb. I realized the &&&$#*&$*& place I'm going to for my second infusion has nurses that won't help me ice.... As the bitchy one said to me - "We just don't do that!!" So using my anger now to come up with a plan and practicing how I can wrap up hands and feet myself (I spoke to the head nurse and told her that if she could just consider it a "comfort" measure...said she would think about that. Anyway..off to find some gels.
I got an RX for anti nausea called Ondasetron but I'm still just doing the ginger infused water. I am glad to have it on standby and have been somewhat nauseus in the morning, but I was scared of by the doctor not wanting to prescribe it and then the side effects profile. 'We'll see... Thanks again!
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Thank you everyone for your kind responses. Labscientistmom- yes I tried to increase up my water intake although I drank more with AC. I am also struggling with getting enough protein since I try to avoid beef or pork. Will eat more fish though. I spent most of Saturday curl up in a couch, the neuropathy seemed like labor pain, it goes around your lower back toward front of lower abdomen. I called the OC on call and he said just take Tylenol. That's no help. I wanted to know if I can take vitamin or something else. I feel slightly better on Sunday, went for a walk, and soak in Epsom salt. Just hope this aches do not carry through the whole week. Taxol is crappier than AC. Thanks ladies and hope you all have a good week.
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I get stiff leg muscles after taxol. I find that exercise (walking) helps.
Zoziana, the side of my right heel is slightly red, but not the bottom. The pain hasn't gotten any worse, so I keep going for walks. It does hurt to just rest it on the bed or ottoman.
I don't know where I left off here, but I had two skin biopsies on Monday to try to get a definitive diagnosis on my rash. She thinks it is an allergic reaction to the neupogen. I'm hoping to get results and a plan of action tomorrow. If it is what she thinks it is, prednisone is the remedy. In the meantime, my face looks terrible, bright red spots all over.
Then, the oncologists nurse forgot to order my next doses of neupogen in time, so they won't be here until Tuesday. I needed them Saturday. Hopefully the one shot I had left, plus on on Tuesday and Wednesday will be enough to boost my neutrophils for infusion on Thursday.
If it's not one thing, it's another.
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Oh gosh LoveMyVizsia, sorry about the forgetting order for your Rx. I hope things go well for you this week (For Thursday).
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Oh gee LabSci I really appreciate your soapbox. I almost look forward to tomorrow (infusion #2) to have the chance to be ASSERTIVE but not aggressive. I will need to insist, for example, on my cool of "icing gadgets" being accommodated (whatever they fit in the freezer if there is a Looooooong delay before infusion like last time) or at least to make sure they give me time to get my iced toes and fingers all ready before beginning infusion, not worrying about hurrying for THEIR sake. I could and might write a book about customer/ patient care in the medical field at this point (ironically I once started a degree in medical anthropology....) Maybe it is time to resume that degree and discuss how broken down our fix it, assembly-line type of system is.... Thank you very much again. Would like to have YOU as my pathologist (not sure if that is indeed your area...)
Ellie
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