Weekly Taxol group
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What Chemo Has Been Like For Me
Chemo has been like entering a tunnel. Deep, dark, dank, odd smelling, and filled with scurrying creatures, this tunnel is frightening and long. There are many sunken pits along the way. Pools of cold water scatter the dim shadowy rocky landscape. Creaking groaning sounds fill the air. Buffeting winds blow one to the sides.
A foreign port has surgically been implanted near one's clavicle under skin with a tube threaded into a vein into heart. Conscious any moment there could be a fatal clot or complication. The port hurts.
Chemo nurses access the port by stabbing it with a very long big needle. Needle stays in for hours. Huge needle. To survive this penetrating pain one has to smear numbing cream all over and around the port for about 1.5 hours before it is stabbed. Weekly chemo + diabetes = stabbing hole never heals. Bruised, tender, swollen always. Cannot let anything touch it, pain too intense. Wear soft fleece.
To start chemo, stabbing. Then blood drawn for labs. Often the blood doesn't come easily so the nurse asks you to look this way and that, turn, move shoulders, breathe, etc. The needle is jiggling in there while nurse is trying to draw blood. Eventually they get enough blood to fill lab tubes but it can take half an hour. Some days lucky and it just flows. Then wait about 45 minutes to an hour for labs to come back. You can't have a chemo infusion if your counts go too low. May have an appt with Medical Oncologist after lab results available. He asks about symptoms, management, discusses any issues or concerns and informs you of latest developments related to your type of cancer. My MedOnc is fantastic. He's a bright burst of light and fresh air in the long bottomless tunnel of chemo.
If chemo is a Go, now Pre-Meds. Chemo drugs are toxic and can cause life threatening reactions so one is given, in my case for Taxol / Herceptin: Benadryl, steroids and Pepcid. The Pepcid is fine, nothing to it. The Benadryl causes agonizing pain all around the port and makes my heart clutch and seize. They have to drip it slowly in saline and after my 12thtreatment I realize I can't stand the Benadryl any more. With the spasming pain and clutching screaming heart it makes me too drowsy to function and renders me helpless. I hate it. The steroids are 3 little pills taken orally. It takes a couple hours for them to kick in. The steroid helps mask the cascade of awful chemo side effects but shoots my blood sugar sky high. Massive doses of insulin hardly make a dent in the steroid highs. Totally messes up my blood sugar, averages, metabolism etc. and puts me at risk for diabetic complications.
Chemo works by killing rapidly growing and dividing cells. So while it is killing cancer cells it is also busy killing the rest of a person. Chemo is pumping poisons into one's body, over and over again, relentlessly, completely assaulting every tissue organ system and cell in one's body. It is brutal and primitive and deadly. Many persons do not survive chemo. Many have to stop. Many are permanently damaged by it.
Sometimes I had to leave chemo in a wheelchair. Some days the nausea, pain, intense bone joint and muscle aches, and diarrhea were overwhelming. It makes you 100 years old. Some days I was so exhausted I slept all day and night and was depleted even in sleep. It was like being beaten over and over and over. Just when the body would start to recover, another onslaught. Dehydration was always around the corner and I had to struggle to make myself drink enough to ward off the worsening symptoms that come with dehydration. Chemo is extremely drying.
The constant dripping nose and intense nosebleeds were scary. I'd have to blow my nose frequently and enormous globs of blood and huge slabs of mucus came out. Impossible to produce so much slabbed muck out of little nostrils. I tried all kinds of nose products and finally Vaseline with Cocoa butter lubricated the nostrils enough to slow down the nosebleeds.
My Chemo drugs damage the nervous system. Neuropathy pain is awful. My whole body frequently went numb with underlying pins and needles prickling, slicing, pressing with reverberating pain. The nerves are an interconnected web and the pain from one point would tweeng and twinge all through the body repeatedly, nonending. By far the most terrifying aspect of Chemo for me is the peculiar alarming sensations of furry creatures running up and down my veins, and ball bearing like things rolling around inside. It is like having an army of energetic rats running pell mell all over inside, scratching, biting, chomping, chewing, kicking and racing. In addition at random intervals different parts of my body will literally move and roll and pulse. Not little sensations but big moving weird as hell movement. Is it nerve damage? Something foreign and malicious is running wild in the body and it is beyond maddening.
To help lessen the nerve damage I iced my hands and feet with special gloves and mittens during Taxol. It definitely helped. Can use these to lessen pain and promote healing if the nerve damage is still bad after chemo. Literature says some of the nerve damage is going to be permanent. I will work hard to heal.
Many times I just wanted to message MedOnc and say, "I'm done, I'm not coming in for any more. I'm more than happy to curl up in my recliner and just die of cancer. It would be far preferable to this hell." I did have to skip a week of chemo after #8 because the pain and scurrying sensations were too much to handle. MedOnc lowered my Taxol dose by 15% so I could continue. After the 2ndtreatment my tumor disappeared to touch so I knew the chemo was working and this of course gave me the impetus to keep going. But it does get to a point of quality of life vs quantity of life.
I am writing this on Day 4 after my 12thand last dose of Taxol. Not out of the woods yet. Taxol is cumulative so this is the nadir, the worst. Yesterday I spent the night in agony with unbelievable chest pain, 911, ambulance trip to ER, CT scan and discovery of big lung cyst. But CT scan shows no spread of cancer or enlarged lymph nodes. I am lucky. Very very lucky. I have good insurance, a great partner, an excellent health care team, and most importantly the prayers of many friends. I may survive this and come out the other side well enough to build back my health and resume life and all my joys and projects.
As I walked, stumbling, then crawled through the tunnel, waylaid by creatures, depleted and unable to move in deep water filled pits, something made me keep trying. I'd make myself get back up, do chores, feed and walk the dogs. If I could keep my eyes open I'd sit at the computer and research treatment options and read years of forum discussions of women going through breast cancer. I read research studies and learned what I could and could not allow and the associated risks. I made long lists of questions and began working on my upcoming surgery details. There would be hours in a day near the end of my chemo cycle when I'd feel almost normal, feel a glimpse of energy, and I seized these rays of light coming through a chink in the tunnel ceiling with all my being, visualizing my life returning to normal, and all the things I want to do, all the absolutely cool stuff I've gathered for dog training, all the wonderful places I've wandered with my Newf boys, and I concentrated on churning the ether to manifest surviving, thriving, returning to who I really am and the meaningful activities that give me the most satisfaction and closeness to God. I remembered kayaking through wild rivers with Orka and the serenity and utter joy I felt.
Finished with this first round of chemo, walking and swimming, fighting my way toward Light. Now I have to try to build my body back up, blood counts back, blood sugar stable, to survive major surgery, double mastectomy in 24 days. Amputating both breasts and all their tissues is intense. No reconstruction so that will help with healing time. No messing with lymph nodes whatsoever so I retain full use of my arms after surgery healing and incur no permanent disability or handicap.
This fight to survive is intense. One thing after another. Almost daily appointments with specialists. Exhausting. They try very hard to obliterate the cancer now at the beginning. Because breast cancer is not curable and if it comes back it is fatal. Chemo is just the first assault; there are many more. I will need continuing infusions of Love, Light, Joy, Strength, Energy and Health from God if I am to win this war. And if I succumb, I will have learned many lessons here at the end of my life, and am grateful for all the blessings the Lord has showered upon me. My life has been unusual and difficult yet I have extremely good karma and have had incredible blessings. I am having very intense vivid Life Review flashes before my eyes, literally, and know something is up spiritually, brewing in the ether with my beloved Guru Preceptor. Whatever happens I always have Him for which I am eternally infinitely grateful and hold onto with all my being.
I am well aware my entry into Heaven will be glorious and heaped with rich rewards and I am so so ready for that eternal harvest of goodness and also a long solacing rest. Jai Guru! The eternal bond developed with my Newfs through love and training ensures we will roam the astral spheres of endless beauty together forever in superlative joy, one with the Lord. Ready, and so glad God showed me the way a long long time ago, and I followed Him!
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Cascadians; you imagery is so arresting. Praying for you that you may have both quantity and quality in the future.
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Thank you for all the well wishes. As bad as chemo was, the hair loss, sickness, etc. When we get good results I felt oddly reware that I made it happen.
I want to wish everyone a happy and heathy New Year.
Let's make this our year ladies.
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Quick q for the knowledgeable ladies and gents that have gone thru Taxol (paclitaxel) txs, does the joint pain and general muscle aches improve with the application of heat at regular intervals? I've had my first of 12 weekly tx last Friday. Thanks. MB1
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Maddie. I used the heating pad now on my legs and feet to try and deal with the pain. Before my old hot water bottle died last week she went to bed with me and that was a pleasant treat. I also use an icy hot/cold roll-on from CVS on my knees (front & back) my wrists and ankles and elbows when it's just starting and it helps some. I have arthritis from playing sports as a young person and also from being in the US Army..but this chemo just blows it all out of proportion now. Aches become pains and that really bites!!
Try your heating pad but know there's OTC that can help too. I take tylenol arthritis since this all started and it helps to at least knock the pain down some.
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I take glucosamine with chondroitin and turmeric with curucumin and black pepper, These pills keep my arthritis at a minor discomfort level.
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Maddie, my oncologist told me to take Claritin ( not Claritin D ) , for joint pain whilst I was going through Taxol. I was surprised because I thought that this medication was just for allergies but for some reason it really works!!. Obviously consult with your oncologist first. Hope this helps
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So..... I start my third round tomorrow. Monday night I went to Mass wearing one of the chemo hats I made. I looked at my face, and all I saw was wrinkles. I know that is just my state of mind, but I have been able to use my hair as a distraction, grey with natural curl for several years. I called a friend who is a vendor of one of the expensive lines of cosmetics. She is busy this week but will call me back later. She asked me to ask my doctor if there are any cosmetics I should stay away from. I realized later what she was asking, so evidently they carry a moisturizer with hormones. I am safe. This could be the answer.
Except my scalp is sore; I may have panicked about the issue a bit late. Scared about taking a shower and washing my hair this morning.
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McBaker....I know what you mean. Hair makes all the difference in the world. When I don't have a wig on, I look like a little old man. But, put on a wig, I look like a different person. Keep us posted about the cosmetics...then you have to share what they are! Good luck!
Hope
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I washed my hair, and I still have it, curling all over the place. I am eager to see if Mary Kay products can help me, too.
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Tomorrow starts week #5 for me. Some where I read how hard week 4 was. Other than losing my hair and feeling like a sasquatch the past few days with alI the shedding I actually FELT GREAT this week!! Other than a really bad case of the runs on day 3 and needing the imodium I had NO other side effects!!
I'm seriously thinking of asking my nurse to cut my treatment drip back. DH went with me last week and asked me "Why are you having so much trouble sitting still?" At the time I told him I didn't know and thought it was my crushed lumbar discs. I also couldn't concentrate on anything ... like my knitting that I took to do. The only time i have trouble sitting is during treatment ...hmmm
Having had time to think about this I believe it's my treatment (drip) speed. My first 2 treatments were slow the last 2 were set at full drip. I didn't have any issues sitting or concentrating during week 1 & 2 but have during the last 2 along with the discomfort of sitting.
So I'm going to ask her to slow them down. I know this will add 1 extra hour to my treatment time but if it helps me isn't it worth it? What do you think?
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Nanette- I definitely think you should talk to them about slowing down the drip. I had to go slower due to an allergic reaction but that I loved spending an extra hour it really didn’t seem much different.
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Boo girl-I too had a tissue expander put in when they removed my left boob. They have not started pumping up my flat tire yet...have they started yours? I am sure it is uncomfortable and I can tolerate pain. Just wanted a heads up to prepare for the pump ups...any advice. I will start expanding soon; maybe my drain will come out tomorrow. Probably won't have my last surgery for my implant until June 2019. DR said depends on how fast we do the expansion. Some folks have to take it slow. I will be starting Taxol / Herceptin on 1/3/19. I will be taking Taxol, 1 x a week for 12 weeks. So, I know nothing will be done before March/April. But that is fine too!
ya'll have a good day!
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Gigi, a pharmacist said to go to the grocery and get a jar of coconut oil. I must smell like coconut candy, but I don't mind it, because the skin lubricated thus, stretches nicely.
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Nanette are you getting Benadryl during your treatment. When I did my taxol they gave me benadryl and I had horrible restless legs and the nurse said it was that and had to do with the way they administer it.
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Volleyballmom yes I do get benadryl as 1 of my premed's. I'll talk to the nurse about it tomorrow....... ut you hit the nail on the head yes it's a lot like restless legs syndrome!!
Hair up-date, my dearest friend of 20+ years came today to help me take off the remainder of my hair;Only problem was she forgot to bring her husband's hair clippers. When she walked in the door she hugged me and cried. She was crying because the knows I love my hair. While we had coffee to regroup she said her sister told her "Linda, it's an honor to be asked to do this (removing my hair). Neither of us had thought about it that way. But we used beautician scissors and my husband beard trimmer 8) She asked me why we were doing this since I still had about 40% of my hair left and I told her this "for 2 days I've been walking around feeling some place between Pigpen from Charlie Brown and a Sasquatch!! Every thing has my hair on it clothes, bedding, floors, my couch.... I've had enough of the scalp headaches and I'm tired of Taxol and the Cancer taking things away from me so this is my way of fighting back. The only way at this moment besides treatment to fight the cancer is for me to get good and mad and try and take control of something!!"
We had a good cry about my hair before we started taking it off and then the removal began. Some how it was oddly liberating to take off the remainder of my hair. The Nair did pretty good too except for the spots on my head where there were still some patches of my original color, brownish black and those hairs were tough!! (the rest of my head was a lovely grayish white) I finished it off in the shower with a new razor.
When DH came home I had on a scarf and had it tied up nicely. He looked at me and said "You really did it!!" He was beaming and proud of me. He really surprised me and had me take off the scarf and said he loved my bald head with a BIG smile. It was so nice seeing that reaction from him because I KNOW how much he loved my hair.
So onward we go. Not blindly into the night but together fighting and not letting Cancer or treatments get us down!!
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Hi Gigi71, I've been getting fills since 2 weeks after the surgery. Actually to get rid of 1 drain they did the first fill 2 weeks after surgery as they thought it would close the gap that wouldn't stop draining - and it did. I did end up having 240cc as the initial fill at TE insertion on the day of my BMX - I had a lot of skin as I had a big chest so the PS felt fine filling them that much at the outset. I only have 2 fills left to get to where my PS is guessing we stop - 600cc's. She then expects to go w 600cc implants & fat grafting, but not til after chemo ends. I am at 500cc now and it's been fine tho it gets a bit tighter every time, and I guess due to the surprise chemo (biopsy hadn't turned up the IDC or the HER2!) I'm going to live with the TE's a lot longer than we expected.
It hasn't been too bad on the fills front though I do think they get progressively more intense - you feel the stretch especially the pecs. I mind more the feelings I don't really attribute to the fills - the constant tingling or feeling like your chest "went to sleep" like might happen to your foot. I find it a really annoying sensation ever since surgery.
For the fills, I try to take advil before going for a fill, and to take a really nice hot shower before and often after. Plus doing all the stretches several times a day if you can (in the hot shower even better!). It really helps. I keep hoping it will also help the tingling and so on too but not so much yet - I don't know how many weeks the weird nerves and tingles last but I'm at 7 weeks and it's not gone yet, so I guess it takes awhile.
I will be on the same chemo regimen as you just starting a bit later this month.
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Hi all, since I was curious about hair growth when I started with Taxol. .. I want to show you my growth so that you know - the end of chemo will come sooner than you think and the hair too 😀 I stopped wearing my scarves in sports community, it really looks like an intentional cut. But not in other places. maybe in another month.
TODAY, I am exactly 1 month after last Taxol. (4th Dec. 2018)
I shaved my hair twice during Taxol, because it was too feather-like. I started to take biotin after chemo ended.
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Jaboo, your hair looks amazing! Mine is coming in fast after T#4 but quite feathery and all grey and white. I was hoping to have enough coverage to ditch the wig when I start my new job on the 14th (I interviewed with the buzzcut my husband gave me right before AC#2), but I’m not quite there yet so there is a tough decision coming.
Also wanted to report that my neuropathy has settled down a bit or at least not gotten worse. Thank you for your encouraging story!
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My hair came right off with A/C #2. I just did taxol #8 and it is growing back, invisibly because it is still snow white. I was hoping for one of those chemo miracles where it comes back a different color, or any color..But it’s back sooner than I expected..
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Probably because after A/C, Taxol seems like body chemistry heaven. I am emotionally prepared to lose my hair at the end of next week. I am going to invest in some Mary Kay cleansing and moisturizing products, doing a trial run on two different lines. I got some old glasses out that have more bling to them, and I am busy knitting caps.
Had chemo yesterday, and was on a steroid high, visited a friend, and talked her ears off-- usually she is the one I need to listen to. Then visited my OT, again, talked like crazy. Then the optician, who needed to adjust my glasses, she was quite curious, and never got to talk to someone who wanted to talk about her BC. Went home, took one out of my new prescription of Clonezapam, and finally got some sleep.
I may go in sometime and get some new ones-- have to pay extra if I want some bling, which I will.
Otherwise my blood values are holding fine. Just 9 left to go, 1/4 of the way there (please don't tell me that each one is progressively worse).
I got a carpet square from my OT, to rub my hands on to wake them up.
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JaBoo I love your hair!! It looks really great 8) congratulations
Mary Taxol affects each of us differently so you might not lose your hair it is ight only thin
As for me I just started week 5 and I got the runs early! They started last night which surprised me it's usually on day 3 but so far like last week I feel pretty good. Just tired but DH and I had errands to do so it's been a busy day.
I found our local ACS (American Cancer Society) no one was in there. But doors were open and unlocked. In the ladies cancer area I found a list of what we could have so I found a wig darker than my salt and pepper...more of the coloring I had 9 years ago with a similar style..I got some pretty scarves for my bald bean and a nice shawl for my shoulders for when it's chilly at night. All I had to do was sign in and write what i took. Nice treat 8)
Hope ya'll have a great weekend. My granddaughters (ages 3 & 7) come home tomorrow so I'll be busy minding them while DD is at work. I love having them home although I do enjoy the quiet while they visit their father. I think I'll have to keep a scarf on my old bean because I'm afraid even though they know my hair might leave one day there's really no way to prepare children for that.
Don't give in to the unknown but go bravely forward one step at a time with our heads held high because WE ARE STRONG AND BEAUTIFUL!!
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I have taken psyllium caps for several years, so I am getting no runs, but dark toothpaste size pieces four times a day. Yesterday I was embarrassed to reported a tingling sensation around my anus, and she immediately responded by reducing the steroid until it went away. I guess I was lucky that I was not embarrassed to report something weird.
My hair is already thin, fine and curly, and my scalp is sore. I'm willing to bet on it-- that or patchy fallout which will require Nair.
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Boogirl-drain came out on 1/3/10 right after my 1st treatment! Then they started pumping up the flat tire, only 20cc. That’s the start. Not bad at all, just a little pressure on the area. Next visit in 2 weeks we may do 40 cc but we will see .As far as my treatment, it went great. No side affects yet, but mine is weekly not daily. 1/3/10 was about 4 hours, next week will be a little shorter cause they will speed it up! Then week 3 it will be about 1 1/2 hrs. Once we are done with The Herceptin and Taxol combo, we go only To Herceptin and it will be 30 minutes!
So far so good. Drinking lots of water to flush system. Taking nausea pills regularly for 3 days to head off nausea just in case, then as needed after that.
Opted for numbing cream prescription cause it was a little painful with needle in the chemo port,but not to bad. But if I can numb it, why not. Good luck when u start.
Hair loss is still iffy! May shed or thin, we shall see
Happy Friday everyone. Have a great weekend.
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I forgot to mention this about the scalp pain.
On Thursday when I went to treatment I asked my Onco Nurse why did it hurt my skin when the hair started coming out. She told me the scalp pain we experience when we are losing our hair is from the nerve endings at the root shaft. Apparently the nerve endings get irritated from the chemo blocking the hair follicles from growing. And that the hair coming out also irritates the nerves because they're still attached!
Made sense to me 8)
Oh I found a topic on scalp pain in the forums. Here's the name of it and the hyperlink if any one is interested:
Topic: Scalp pain before my hair falls out?
https://community.breastcancer.org/forum/69/topics...
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Good Morning Ladies. I hadon't my lumpectomy and nodes surgery yesterday. It was a long day, very sore this morning. Good news they ran some test on nodes during surgery and they were all clean and the original nodes it spread to was all gone only clip left. Of course I have to wait for my pathology reports but I am definitely breathing easier these days
I did chemo for, taxol (12 weeks) a/c 4 rounds over 8 weeks. It was scary wondering is almost 20 weeks of chemo and the side effects going to be worth it in the end. It was as I look back, I wish I worried less. I lost my hair during week 5 of taxol, the scalp pain only last about a week. My work side effect on taxol was leg pains when climbing stairs or in the morning. After about a week or two off taxol they are all gone. My hair hasn't really come back anywhere. My biggest pet peeve is the eyelashes eyes always running.
But long story short, I am grateful for chemo and being hairless right now because it worked.
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Thanks, Nannette. At the age of 68, but having always rejected vanity, I am very concerned about the wrinkles from being an ex-smoker. People have complimented me on my natural silvery curls. Now I have brought out an old pair of glasses with more bling, I am trying those Mary Kay samples, busy knitting hats, wondering about botox for left under eye area and upper lip. I am not vain. I accept ageing. Sigh..... just gotta get some distractions, glasses, earrings, cute hats, moisturizer. Is that vanity? May pay some extra for new glasses with more bling.
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Mary had to giggle over your post. NO sweet you're not vain! I'm 56 and losing my hair has made me NOT vain any more lol
I love that you bling your glasses. I too have been trying to knit and crochet some caps. I started one in Tunisian but had to frog it as the cap became way too thick for Florida weather. So I'm knitting up the newsboy style cap that's on knots for love and doing it in a nice bright fuchsia color. It's been a long time since I've used double point needles so I had to get passed that frustration point.
If you do go with the botox let me know how it goes. I too might like to have the under eyes done.
VolleyBallMom way to go!! Congrats
so happy to hear it all worked!!Hoping you recover from surgery quickly and without complications!!
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JaBoo—hair looks amazing! So cute!
I’m 9 days out from my last Taxol. My hair in the front in horribly thin. The back and sides of my head is growing like crazy. I bought Nioxin to try to catch the front up.
I walked 3 miles yesterday and managed to run *almost* a mile. It’s making me feel so much better to really exercise again. I had been running 3 to 4 miles 5 days a week but that will definitely take a minute to get my stamina back. Fingertips feel weird. I iced so hard I have frostbite damage rather than neuropathy. My fingertips are leathery—thus I’m thinking I damaged the fingertips icing them. My nails look a little funky. My feet are 100% perfect. Absolutely no neuropathy on my hooves. My eyesight has gone to crap which is unfortunate because I had amazing vision prior to chemo. No eyelashes or eyebrows growing yet.
Everyday I feel a little less toxic. I have convinced myself that I’m only going to keep feeling better. Cumulative my ass. I’m about leaving chemo SE in the past.
The Taxol runs are real. (I learned not totrust passing gas!!!!)
Happy Saturday!
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