October 2019 Chemo Club Members
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RadQueen I hope you can start Taxol after Christmas. You can have some control over this right? There are people who have to put off treatments because they are sick so there is probably no difference if you wait. So you will get 12 doses of Taxol? I wonder why some people are given the dose dense treatment instead. My cancer seems similar to yours but it was smaller and just microscopic in one lymph node. I had a lumpectomy. Are you getting the Nuelasta patch after treatment to boost white blood cells?
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Good morning all, 3/4 AC coming up Friday. Last one 12/27. Can't wait to have this done and over with. I met with breast surgeon yesterday. Alot will be going on the next few weeks in preparation for upcoming surgery first week of February. Meet with oncology radiologist on Thursday to discuss radiation post op. 6 weeks worth. I meet with plastic surgeon next week. Both the cancer breast surgeon and plastic surgeon will perform a partial mastectomy with bilateral breast reconstruction. I'll have matching "girls" (the plus side is I have very large breasts for a small person and want the "girls" to match,) so the left side will be reduced to match the right side. Mammogram first of January with radioplaque tag placed to exactly pinpoint what needs to be removed this also assists with radiation. Day before surgery dye will be injected to outline lymph nodes to see if any need to be removed. I had 2 positive nodes, but now are normal. I have to have 4 weeks off without chemo, so I got the okay to go to Florida to see my home down there for 2 weeks. I'm excited!!! Didn't think I would get to Florida this year. It will be a good break for me, no chemo, no running to doctors. Light is growing brighter at end of tunnel. Just knowing my tumor is gone and lymph nodes back to normal is such a relief. Just want to make sure all those micro cancer cells are gone too. Snowing really hard here in Rhode Island, about to get my play clothes on and walk my beautiful golden. He loves the snow like his owner. Have a great day everyone.
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Cynd my MO is going to let me start my Taxol on Jan 6th. WOO-WOO So that is great it lets me go see family for Christmas. It also lets my blood counts come up even more. My MO does not believe in Neulasta he says it causes more SE than it helps with. Do you still have to have radiation ? As all my lymph nodes were neg. radiation is not necessary for me and as I had all breast tissue removed I will never have to do another mammogram YEA. I was very blessed to have such a great Breast Surgical Oncologist, he was able to remove just the tissue and leave my skin and nipples. In my eyes he is a ROCK STAR!!! Then the Plastic Surgeon also a ROCK STAR!!! did his magic with the TRAM FLAP. Other than the scar on the side of my breast it is hard to tell that I had a bilateral mastectomy at all. The best part is when all my chemo is done I can go back to the Plastic Surgeon and he will revise the scar (make it smaller) and do a nipple lift. My insurance will pay for all of this as it is considered part of the original surgery. AS you can see am optimistic about the outcome of all of this. The Taxol still worries me as I read about other peoples problems with it. My MO says don't worry it will be fine. I just have to keep the faith and keep praying that all will be well.
Hope that your journey will be as blessed as mine has been. Just keep the faith and place it all in Gods hands, he knows the outcome of all things.
Much love to all.
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Hi Ladies,
Sorry I haven’t been on much. My journey continues as I have been diagnosed with Bone Mets. I have joined the Stage 4 Bone Mets Group to try to better understand my new DX.
I wish you all good luck and prayers that your SE are easy.Take care!!
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Day #10 after my third Taxotere/Cytoxan and feeling much better than after #2. I went into what I now call a "chemo coma" for a solid week after T/C #2 and basically slept, hydrated and basically nothing else that week. Woke up day#8 and my brain was awake! It was then I realized how out of it I had just been for that first week. I also had so many more SEs following that "coma": bad headache/neckaches x 2 weeks, high heart rate, shortness of breath, seeing lights in front of my eyes, dizziness and intolerance of everyday activities of life (just cooking and cleaning). I had to take 30 min. breaks just cooking dinner! (Not that I have any taste after chemo, but for my family.) I also had to visit the ER twice, on day#8 and day#10 for fever of 100.4. Thank God everything checked out no infection, but I still got antibiotic by mouth x10 days. My white count was 69,000!!! on day #8 and we told the ER doc I got Neulasta (which bumps up WBC to decrease infection risk) but he thought I should be admitted and given "big guns" IV antibiotics (Vancomycin) to fight a possible infection. I was very discouraged and told him I didn't want to be put on this and then possibly get CDiff or SEs from wiping out all my normal, good bacterial flora, unless it was absolutely necessary. Blood, urine, chest X-ray, flu test, had all come back no infection. Thank God this ER doc did his due diligence and contacted the oncologist on call for a consult. The MO said he thought my high WBC was due to Neulasta-so I got discharged home!!! I thanked the ER doc for his thoroughness. Day #10 fever was consistently over 100 degrees again and they again recommended an ER visit. My WBC count was 45,000 these 2 days later, so it was coming down fast. All checked out OK again and no more fevers after day#10.
Checking in with my MO before TC #3, she said the fevers may be from the Neulasta, and that the dose cannot be changed. She told us that my WBC "nadir", about zero, is about halfway between chemo, so day #11-12, even with Neulasta. She did however, say that she was going to give my Cytoxan slower, one hour instead of 30 mins, thinking that would really help decrease my SEs. She was right!!! No chemo coma, headaches and, so far, great intolerance of activity. I've only been taking a nap daily, had the usual bad constipation and had the usual loss of taste. WAY better getting Cytoxan over 1 hour! Looking forward to #4 - the LAST!!! coming up on the day after Christmas and hopefully will return to work end of January 2020!!!
Just some tips that have helped me if you're on Taxol/Cytoxan. I do use the Paxman scalp cooling cap system. They do it at my chemo clinic. It's expensive and I've got such sparse hair, esp on top of head, that I question whether it was worth it, but I do have probably 30% of my hair left. There's so little left, I want to shave it off but am so scared how bad I'll look, so haven't yet. They say it helps prevent possible permanent hair loss, so I'll continue. My DH helps me ice my feet and hands pre-chemo 30 minutes (like the Paxman), during and 1 hour after chemo. It'd be very difficult if I didn't have his help, but I don't want permanent peripheral neuropathy, which Taxotere is known to cause sometimes. I tolerate the Icezinger Power gloves and NatraCure icy socks well. We change out ice packs every 30 minutes continuously. We bought enough ice packs replacements for the socks for the 3.5 hour treatment, and use baggies of ice inside the gloves every 30 as well. My family doc also put me on MetaNX, a prescription medical "food" that prevents peripheral neuropathy and is prescribed for diabetics that may get it as well. Its a super-charged, more readily available B complex form that aids the nervous system, since Taxotere destroys it. It costs $150 for 90 day supply. My doc says he doesn't understand why all MOs don't prescribe it it you're on any chemo with this SE. I've been applying Latisse, a prescription eyelash med to retain lashes and it works! My eyebrows, however, are another story and they look awful invisible. I'm horrible at drawing on eyebrows and need any tips anyone has. Very discouraging. Constipation is serious with TC chemo - I've learned that taking Senokot-S (sennosides 8.6mg plus decussate 50mg) Am and PM keeps me regular and not going into diarrhea.
I'm lucky enough to be off work during chemo, as I'm a nurse and can't risk infection from work. I honestly am in awe of all you sisters that try to work thru this. You must have, as Gandhi said 'Strength that does not come from physical capacity; it comes from an indomitable will'.
Wishing you all peace, love and comfort during these holidays; especially prayers and love to all of you who are missing family members that have passed on this year.
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Hi Warriors - congratulations to those of us who finished our final round of chemo. (My girlfriends and I had a tea party to celebrate, see pic below.) Here's to easy side effects and no low immunity complications during this higher-virus time of year.
To all those still fighting the fight, sending love and strength.
My last chemo was 12/3. Had worse nausea afterwards than ever before - compazine rx got upgraded to zofran, but haven't had to take anything for 48 hours now. Heading into low immunity time, more shortness of breath this time than the other 3 rounds. Then should be feeling better through 1/8/20 when I start radiation.
Have a lovely 3" bald "headband" even though I used DigniCap. Peach fuzz is starting to grow back it seems. Still, would recommend Penguin Cold Caps if anyone asks me, way more effort for Penguin but the oncology nurses all have seen better results. Now that I've seen my results, I would have to agree.
Have some bald patches in my eyebrows, but grateful I kept most of my eyelashes, and did get the free brazilian (TMI sorry) that I had joked about.
Man chemo sucks. Wouldn't wish this on anyone. But so grateful to have you all here alongside me. Radiation should be so much easier hahaha.
Sending wishes for a peaceful holiday season.
xoxo Michelle
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Kaaadams,
Hang in there, I went through the same experience a week before thanksgiving. After receiving 1st infusion of AC with trial/placebo, plus neulasta, came down with fevers over 101, extreme body aches and pain, cough and couldn't breath. I mean really couldn't breath. They admitted me to hospital with extremely high white count, and were worried about pneumonitis. Every test came back negative, thank good. Even flu panel. I got heavy dose antibiotics, until cultures came back, which again negative. Had every consult in book, conclusion was Acute Viral Syndrome. Spent 4 days in hospital, lung specialize put me on steroids and cough lessen and breathing improved. They had to hold my next infusion by a week. Even my hgb was only 8, they were getting ready to transfuse me. Yesterday had 3rd infusion of same, now have a cough again. Starting to get worried. No fever.
Good think is I only have 1 infusion left. 12/27 and I'm done with chemo, just trial drug every 3 weeks, surgery first of Feb. I'm beginning to see light at end of tunnel.
U tube has some great videos on how to apply eyebrows. I have none, and just recently lost rest of eyelashes. I'll have to try latisse. I was actually feeling well enough to attend our annual Bonko Christmas Party. We have been together for over 40 years. I'm seated in middle, Have a good week everyone. Marta
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Marta, we had our Christmas Bonko too!! I was feeling good enough to go. At the end, everyone put on these pink hats my sister got that says no one fights alone. Brought me to tears! Thursday I had labs checked and my MO says my WBC is very low. I am feeling terrific so I was very surprised. Will recheck again Monday. I hope I can get my last chemo on Dec 20. I do not want to have any delays. Plan is to have 6 weeks of Radiation after chemo. I am losing my eyelashes and I think my eyebrows are thinning out. But I see the light at the end too!!!
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Kkukowski, I love the saying no one fights alone. My Bonkettes tell me that all the time.What a supportive group
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Today was my final infusion!!! I wore my socks that say
“ I am a delicate Fu$&@ng flower!” MO slowed down the Taxol to two hours instead of one hour and gave me double the benedryl to prevent a reaction and it worked. In this picture is my cousin and sister. They have been there thru it all: appointments, making meals, lunch during infusions and working out with me!! We had a Downton Abbey tea party at 3 infusions. My sister had 7 different flavors and would heat them all up for me. The nurses thought it was so funny!
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Kkukowski,
Congrats! on finishing up infusions. My last one is the 27 of December
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Hi everyone, I have not posted in a while due to being so busy at work and so tired lately. From my recent blood tests, I think the fatigue is coming from low iron, RBC, Hematocrit, Hgb, and Mean Platelet Volume. This chemotherapy induced anemia could be the reason why I've had more pain in my legs in addition to the fatigue. My goal is to try to eat more iron-rich foods to see if I can get through my last cycle of chemo (3 more treatments to go in January). Has anyone else had an iron deficiency? I know what foods to eat that have high iron (meat, tofu, almonds, cashews, broccoli, asparagus, etc.), but what I don't know is how much of this do I need to eat each day in order to overcome my deficiency?
Kkukowski and Michelle94904 I'm celebrating that you are done! Martaj I'm happy you only have one more to go. Kitkat8074, I may be joining you on the bone mets thread.
kaaadams, I'm glad you're feeling better and I'll be thinking of you doing TC #3. I feel for you because my 2 doses of Taxotere and Neulasta were extremely tough. I hope your liver doesn't give you trouble like mine did.
RadQueen thanks for sharing your BMX experience. I'm hoping to do that in late February or early March. I'm still trying to decide on reconstruction. I'm thinking of doing what you did. (I definitely don't want implants.) Can I ask how the recovery went? The long recovery is the only thing that makes me think I should just go flat. Do you think that I could work on my laptop from home after about a week? My doctor said it would be at least 4 weeks to recover and that seems like an eternity to me.
My eyelashes are basically gone, just a few stragglers on each side now.
I've found that Ardell lashes work best for me, but I"m using the glue from the Eylure box. I was able to keep the lashes on for 3 days! 
The Eylure Naturals gave me a "lashes without mascara" look, which is very natural looking, but I like the Ardell's better because they provide a better fit for my eyelids, which are apparently a slight bit larger than average. I've also found that with Ardell, the lower numbers on the package (e.g. 110, 125) seem to have shorter lashes (which work better for me in trying to replicate how my lashes looked before they left me). The selection of Ardell's at my local stores are very hit or miss, so I've resorted to buying online. The stores seem to only stock the "glamour" lashes. I've found that having a 10X lighted mirror makes life so much easier. Why didn't I get that from the start?0 -
Earlier this year, I took this photograph at dawn from my dining room window. I grabbed my phone and took a quick snap before getting ready for work. I knew that I only had a few minutes before the light would change. This was a crisp March morning before I was diagnosed, before life became more complicated and before I stumbled into this crack of fatigue that takes every ounce of willpower to overcome. A Tuesday. Ordinary except for this tiny drop of honey sunshine that welcomed me to my day, the gift of an opportunity to appreciate a moment of still beauty before my routine rushed to conclusion.
Today, this photograph fits so well with the words of Jennifer Worth that I heard on Netflix from the BBC series, Call the Midwife. Vanessa Redgrave says these words for Jennifer Worth at the end of Season 8, Episode 5, "Episode 3". The words are so beautifully crafted that I had to share them with my forum sisters.
Having completed my fifth chemo cycle with one more month to go, I am grateful for the light in the past when I basked in the glow of a Tuesday sunrise. I take comfort in the reminder that there is light where I am now and that it will be light where I will go again. Merry Christmas, Happy Hanukkah, Kwanzaa or whatever holiday you celebrate with those you love. Happy New Year, too. I wish for better health for all of us and strength to endure whatever treatment comes our way in 2020.
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cyathea, I am praying you don’t have to join me in the bone Mets thread. Hope all goes well and you find replied from your pain. I know how hard it is struggling with pain. I have not been working and have filed for disability. The pain is more than I can bare some days and meds only lessen the pain, it never goes away completely.
I wish you all a joyous holiday season and wish the best for everyone
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Caythea,
Beautiful
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Merry Christmas to all fighters and survivors out there. Totally does not feel like Christmas at all. Still feeling pretty poorly from last week’s chemo. I am hoping Friday is the day I feel great. We are celebrating as a family on Sunday.
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Good morning everyone,
I hope the Christmas Holiday was good to all. My last AC chemo tomorrow. Felt OK yesterday, was able to taste a little. Family was very helpful everyone pitched in. Attached is a photo of my family
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Last chemo today!!!!!!
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I am very happy for you Marta!!!
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I got to ring the bell!!! It has been a long haul since diagnosed with Triple neg breast cancer stage 3 in July. Neoadjutive therapy, now have 4 weeks off before partial mastectomy with reconstruction of both breasts to make the girls even, Then 6 weeks radiation after surgery. I am just so glad no more chemo. Still on trial drug/placebo every three weeks to commence again after surgery. I want my hair back!!! And to be able to walk with my dogs without getting tired. Back to sking, kayaking, hiking, swimming all my outdoor stuff. My supporter hubby John
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Martaj beautiful family. Best of luck with surg and radiation. Sending many good thoughts and prayers your way.
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Two more infusions left of Taxol on the ACT treatment. My doctor has me take the steroid pill twice a day the day before infusion and for three days after infusion. I have a lot of energy so It seems to help. I also take Claritin for the Nuelasta patch injection. I use the Digni Cap and it’s working! My hair shed a lot during the the first 4 treatments of ACT but although my hair thinned a bit I still have full coverage. Just a little hair loss where my part is so I comb it slightly different. I started off with very fine hair to begin with so not sure if that helped. It’s important that the cap fits correctly and is tight. Also that your hair is wet before the cap goes on. I wash my hair just once or twice a week.It is not fun to wear and it adds extra hours to treatment but when you see the results and that it’s working it motivates you to keep using it
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Finally got to fly and visit my home in Florida for 2 weeks. Wore my mask on plane. Many others had masks on also. Here for 2 weeks, then back to RI for pre-op stuff and pending surgery. I needed this break from treatment so bad. No chemo, no running to MD appointments. I'm going to walk the beach today looking for shark teeth for my grandchildren. Hang in there all
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Finished my last chemo 2 weeks ago and thought my energy level would return quickly. Not so true. I walked the beach for a long time yesterday came home exhausted! Good kind of tired, but thought my energy level would of increased some. Pushing hard to get back in shape for upcoming surgery Feb. 13. After 6 months of chemo it has taken it toll on this body. No muscle mass left. I know take it easy, I did have 2 naps yesterday but am wishing for more energy and my apetite to return. I am small in statue and lost over 15 pounds in 6 months. I try to eat but still no taste. Today another day. will work on it. I have to say having sunny weather really helps
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I am 3 weeks out from last chemo. Finally feel back to normal. I can drink tap water now. I think the metal taste is all gone. Worked my first full week of work with no doctor appts/ lab work. Went to the gym every morning. It was good to get back into the old routine. ( now if my hair would start growing back)
I start radiation Jan 20. Not sure if I will need 21 or 30 treatments now. Praying hard for 21!
Martaj: looks like you are doing everything right to prepare for your surgery. Sunny weather and sand and sounds of waves would be good medicine for me!! I have little collections of shells throughout my house from our trips to Florida, Outer Banks, and Calif. I never thought to look for shark teeth. My oldest son is a freshman at Arizona State. I hope to visit him after all my treatment is done!!
My sister heard about an organization that matches you with a local house cleaning company and they will come in and clean your house for 2 hours 2 times, about a month apart for free. Yesterday two young gals came in and cleaned my first floor!! Was such a nice treat. Cleaning for a Reason is the name of the organization. Just need a doctors note to verify you’re a cancer patient.
Thinking positive thoughts for everyone!!
Kell
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Kell,
I'm 2 1/2 weeks out of chemo. Starting to taste some things can't wait till full taste returns. Tired of tasting metal and nothing when food looks good but tastes terrible. I was able to walk longer yesterday, then came home and took a nap. My skin is starting to clear up, energy level slowing increasing, and not up at 2-3 am anymore, actually sleep until 5 which is great for me. Weather has been beautiful here in South West Florida. Broke all kinds of records yesterday. Just what the doc ordered. Trying to build up body for upcoming surgery Feb. 13th. I'm just so glad chemo is done. 5 months did me in. Lost all kinds of muscle mass and weight of which I did not need to lose. Today will help hubby uncover boat here in Florida and wash is down. That will be good excerise for me. I might even go for a swim in heated pool. Take care all. Have a great day
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Walked 3 miles on beach yesterday with my sister. Yoga on beach this am with walk. Actually able to taste some delicious chinese food yesterday. Not all of it but some. 3 weeks out of chemo and taste is taking it's sweet time returning. Appetite slowly returning. Best thing is my skin is clearing up from the horrible rash I had. Now my hands and feet are peeling. Weather has been beautiful here in southwest Florida, unfortunately fly back to RI early Wednesday morning to start pre-op stuff for upcoming surgery. Just want this over with. Radiation to follow for 6 weeks after surgery. Have a great Sunday everyone.
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Haven’t checked in for a while. I have been commenting on another forum for those who started radiation in January. I have completed radiation treatment as of Tuesday. Just waiting for my skin to heal up from that. I still see OT for my right arm to prevent lymphadema and we are trying kinesio tape now. I can’t wear the compression sleeve until the skin under my arm stops peeling. Will have one more follow up with RO and then will just f/u with Oncology. Not sure if I will be starting any hormone treatment due to history of blood clots. Will need to see if the benefits outweigh the risks.
I want everyone to know I appreciate all your comments as they helped me get through this overwhelming condition!! Thank you for sharing!!
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Congrats, Kkukowski on finishing radiation! Thanks for posting. I'm so happy that you can put that behind you now. I hope you don't have bad lymphadema. I have a friend with this and it is very difficult to manage. It is one of the things that I fear about having a BMX with sentinel node biopsy on both sides.
I have not had much to post lately since there was an issue with scheduling for surgery, but my good news is that my bone biopsy came back negative. So, instead of being Stage IV, I'm probably a IIIB. The pathology report from the surgery will confirm this, but I am very much encouraged that the spot on my spine was not a metastasis of my breast cancer. I knew that CT scans could be "wrong" at showing metastasis, but when a doctor tells you that it is "likely" cancer, I tend to prepare for the worse case and hope for the best. In this case, my hopes and prayers were answered with a positive outcome. So, now my path is focused on preparing for surgery and continuing my Herceptin/"good chemo" treatment (and hoping that I do not need to do radiation therapy).
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So happy you have received good news, Cyathea, on your pathology!! Hoping your surgery is smooth sailing!
Martaj, did u have surgery and if so how are you recovering0
