Starting Chemo in November 2017
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rljes - So glad you've gotten some relief for your hip! Thinking of you as we both go in this week.
Meow - I am so very sorry to hear about Gertie. Dogs are such a wonderful source of love and comfort and they become such a part of ones family. We know that at 17 years old, Troy will be leaving us soon. He's had a long and happy life but we will miss him terribly when the time comes.
Frozentoes - I had my surgery pre-chemo, with 3 lymph nodes removed but only one involved. I am doing manual lymph drainage daily as taught by my physical therapist and have had no lymphedema. This despite the fact that I still have swelling from the Alloderm used in my reconstruction. I've been told this should improve once I complete chemo and my body is able to direct its energy back towards healing.
Side effects: I too have had increased "urinary urgency" since about the second round of chemo. (A real issue since I have always had a pea-sized bladder and am pushing water even more than usual per my MO's instructions!) Another skin problem to add to my ever-growing list is a hangnail that became infected and took at least a week to heal. Although I opted not to ice hands/feet due to the fact that I'm cold capping and it just seemed like too much I have not experienced any neuropathy. My feet are always cold and I wear Vionic slippers (they have built-in orthotics) around the house as a result of preexisting plantar fasciitis, which is slowly improving.
My lab work has been more or less normal throughout chemo and I've been going out to do errands, etc. with no mask. But I've been off work on disability, so am not being exposed to sick colleagues all day while breathing the lousy recycled air in my office.
Getting organized for Round 5 tomorrow. I've picked up dry ice and bread to make sandwiches and am getting my bag packed with snacks, magazines and all my cold cap supplies. The actual infusions are long but manageable for me, even with the cold caps. I just hate the prep!
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Meow - I am so very sorry to hear about Gertie. Dogs are such a wonderful source of love and comfort and they become such a part of ones family. We know that at 17 years old, Troy will be leaving us soon. He's had a long and happy life but we will miss him terribly when the time comes.
Frozentoes - I had my surgery pre-chemo, with 3 lymph nodes removed but only one involved. I am doing manual lymph drainage daily as taught by my physical therapist and have had no lymphedema. This despite the fact that I still have swelling from the Alloderm used in my reconstruction. I've been told this should improve once I complete chemo and my body is able to direct its energy back towards healing.
Side effects: I too have had increased "urinary urgency" since about the second round of chemo. (A real issue since I have always had a pea-sized bladder and am pushing water even more than usual per my MO's instructions!) Another skin problem to add to my ever-growing list is a hangnail that became infected and took at least a week to heal. Although I opted not to ice hands/feet due to the fact that I'm cold capping and it just seemed like too much I have not experienced any neuropathy. My feet are always cold and I wear Vionic slippers (they have built-in orthotics) around the house as a result of preexisting plantar fasciitis, which is slowly improving.
My lab work has been more or less normal throughout chemo and I've been going out to do errands, etc. with no mask. But I've been off work on disability, so not am not being exposed to sick colleagues all day while breathing the lousy recycled air in my office.
Getting organized for Round 5 tomorrow. I've picked up dry ice and bread to make sandwiches and am getting my bag packed with snacks, magazines and all my cold cap supplies. The actual infusions are long but manageable for me, even with the cold caps. I just hate the prep!
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Good evening ladies! I haven’t posted much, but no news is good news. #5 tomorrow, I’ve got my bag and lunch packed and ready to go.
Frozentoes- I was really worried about lymphedema, I have seen what it does to a person in several patients. My dr did a sentinel node mri before my surgery. This will sound horrible (and it really was awful) but they gave me injections into my nipple and traced the path of the lymph nodes. That way they knew which ones fed where in the body and they could avoid the ones needed to drain fluid to the arms. Idk if they do this for all surgery’s or only specific ones. It was worth it, no signs so far of lymphedema, but I really wanted to punch the radiologist and I called him a choice few names, it hurt that bad. Pain was over as quick as he did it but OMG!
Meowmmy- sorry about your fur baby, mine is getting older by the day and I worry about the day I have to say goodbye. He’s almost 11 but he has bad hips and some questionable spots that may be cancer. I just keep him and happy and pain free as I can until the day comes. We love them with all our hearts and miss them when they are gone, but always do right by them no matter how much pain it causes our hearts. He won’t be my first to say goodby to, and not my last, but he holds a special place in my heart as I know yours did. She was very beautiful!
Good luck to everyone making their rounds this week!!
Tina.
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Good luck Tina on treatment 5 - sounds like you’re doing great and will be done soon! Aren’t you loving our warm weather? I haven’t been out in it much, but it keeps the house cozy warm.
Has anyone here had a low grade fever sprout up in afternoon or evening off and on? I have had this 99.8 fever come up for about 3 hours, then it disappears. I can always tell I have it when my cheeks feel flush. I take my temp and there it is. This like the back pain hasn’t stopped. I don’t think yesterday I had any fever, but this has been going on for weeks. Just wonder if I’m a loner on this. I feel if I call my doctor and tell her - it will get sloughed off. I just find it a little strange
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I’ve had the same thing. I get a low grade fever late in the day and it makes me feel really sick and then I panic because the Dr said if it reached over 100.4 to call immediately and go to an ER. They also told me not take take Tylenol because that would bring the fever down and wouldn’t be accurate. No one knows what is causing this,the chemo or the neulasta.
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Mudd - are you still receiving chemo treatment? I’ve been through for 6 weeks now, so I thought any fevers would stop by now. After my second treatment, I ran a 100.4 fever once and it probably was the neulasta then.
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This week is my last treatment, including neulasta. The fever usually starts about three or four days after like clockwork in the mid to late afternoon and I feel really ill that's why I take it in the first place. My dr. said why are you taking your temperature and I told him that 99 plus shouldn't make me feel so feverish. And then I agonize and take it a million times to see if goes up. It once got up to 100.4 as well but the oncall dr. said it has to stay at that for an hour and then call back but within 20 minutes it started creeping back down to 99.5. It ususally goes away about five days before the next treatment. ( i have chemo every three weeks) and like I said, no one can give me a reasonable answer. I even bought a second thermometer to make sure mine wasn't broken! I had NO IDEA it could last after treatment ends, if I'm understanding you correctly. Yikes... Hope all goes well for you
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Blair, I’m six weeks past chemo too. How is your hair looking? I’m still really bald and getting nervous about it. I have about 1/16 inch growth, but it isn’t full coverage, and it’s white, almost translucent. It was mostly dark before. I’m on a BRCA FB group, and people are showing pics of lots of hair at 5 and 6 weeks.
Other than that I’m doing well. I gained 10 pounds in the 4 weeks after finishing chemo. Ugh! I’m not noticing side effects from the Anastrozole unless the lack of hair is one. I’m going to take my first business trip since I was diagnosed. I’m a little worried about my energy level, but I seem to have most of it back.
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meowmmy i'm sorry to hear about Gertie. I lost my shih tzu around June 2016. and i remember crying all day when i heard the news (i was on assignment for work then and my brother called me to tell me). My thoughts are with you.
blair i’m barely 3 weeks post chemo and actually had a sore throat and felt feverish the other day. so i called my MO i’m back on antibiotics this week. =\ I still haven’t found a surgeon to replace the original one and i’ve already met with 3 other surgeons. the one i got along with will also be out of the country the week of my surgery.
I haven’t posted or gone online in a while. i met with a therapist the other day. that one went fairly well. and i have been put on a very low dose of anti-depressent to tide me over until after surgery.
so much for meds-free month before surgery. bye bye illusion of feeling of not being ill! =\
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blair2- loving the weather! I keep checking the pool for the magic number so I can go swimming. About 3 more degrees and we are good to go!!
Orange daisy- I was worried about my hair growth but not so much now. They reduced both my meds tx4 and I have fuzzy growth, but it’s white. I too had dark hair. I was getting a little scared. Started Biotin 5000 mcg yesterday just to give it a boost!
So good news at infusion 5, I am officially done with chemo! Yeah!!! She said my labs aren’t recovering well even with the reduced chemo amount so she is stopping the chemo. So I need to call my radiation oncologist and give her the heads up. Still have to go in every 3 weeks for herceptin and labs at least the next infusion. I may postpone rads a little bit since my March work schedule is already out and I didn’t put in for the time off. But I can get the first appointment knocked out of the way.
Tina.
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congrats Tina for being done with chemo. It is a wonderful milestone.
My hair isn’t fuzzy like so many people describe. It’s stiff and prickly. Feels like a man’s scruffy face. I’m taking biotin, but when I finish this bottle, I’m going to stop. There’s a new study out that says it interferes with blood tests, including those like CA125 that detect cancer. I’m rubbing my head with Castor and Jojoba oil every day, using Nioxin shampoo and conditioner, and putting collagen powder in my coffee. Now that’s dedication to mess up my coffee!. I need to make an Essential Oil concoction. I bought several that are supposed to promote hair growth, but haven’t used them yet.
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Yeay - Tina on no more chemo! If they were extending it anyway, you are well covered with the treatments. The body can only take so much.
Kat - it’s good that you are hanging in there. I know you want to get your surgery done and over. The anxiety is harder to deal with than the surgery I think, but you will feel relieved when that gets accomplished. Chemo to me was hell compared to the surgery. I had a reduction - so a lot of tissue was removed. However, I was lucky I didn’t experience lymphoma afterwards that some suffer with. Sorry you have a sore throat - that’s no fun - and hope it goes away soon with the antibiotics. I still have my pesky cough!
Orangedaisy - I have these fine, fine white hairs that are 3/8” long here and there on my head that look like they grew the whole time. It’s fuzzy stuff, doesn’t look like true grey hair. However, my shaved nubby black hairs of 1/8” are still not growing, so l’m very much bald. I see no new hairs that have fallen out, coming in at all. I read it can take 3-4 months after last treatment for hair to start really growing. Taxotere does make me nervous with the lawsuits against it. I read an older post of someone that had our chemo regimen, and she stated it took her hair a good three months > treatment to notice a regrowth. . So - I’ll let you know if I see any changes. In fact this last week, my lower left side of my eye lashes suddenly fell out! (I may have rubbed my eye too hard, as eyeliner can cause my eyes to itch sometimes) My lashes and brows thinned out a little, but are mostly still there.
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Blair, funny you mention the lashes. I've lost a few more lashes and brows on the left side this week too. They are still pretty good. Fingers crosses the rest will hang on for both of us. I also have a few fine white hairs about 1/2” long that look like they grew the whole time. Your experience makes me feel better.
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Orangedaisy I've also read it can take several months for hair to start to grow. I've also read that many people have the prickly stubble as the hair begins to come in. It sounds like that is a good sign. I think getting our hair back is something all of us are anxious about, especially if we've taken taxotere. I've kept quite a bit of my eyelashes and most of my brows, but I've heard that some people lose them after chemo so I don't feel safe yet on that score. I'm only 2.5 weeks out of final chemo so I'm a newbie.
Kat My pre surgery time was very difficult. I hope the therapy helps you.
Nonahope My thoughts are with you today as I know you find out test results today.
Tina, are you finished with chemo? That's so great!
My best to all who are doing their infusions this week. To those of us who have finished I hope we get stronger every day as we work toward our physical/mental/emotional recoveries.
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Orangedaisy I just wanted to mention that when I met with my PA before I started Chemo to discuss side effects she told me permanent hair loss was possible with Taxotere but that in her 10+ years of helping to treat 1,000's of cancer patients she had never seen a case of it. When I get anxious about my hair remembering what she said helps me. Take care.
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Chemo #5 day 3
Meow - so sorry to hear about your Sweet Gertie-bird. I have had to put down several of my pets and I find it rather comforting to let them go in peace - out of pain. I just wish I could have done the same with my Dad/ Truman I adopted at age 10/11 so he won't be around much longer- but I like having senior dogs that no body wants. He's a real trooper. slow pace like me.
I;m so tired after Chemo #5. I just want to cry. NP MO substitute for my *ss MO was wonderful. she suggested Vit B12 in liguid form to absorbe directly into blood stream and Xantax for Acid reflex. SHe took the time to really talk to me and look at me.
Talk about Chemo Brain! I put pepper in my dog's food instead of of my food. good thing i caught it in time Poured coffee into my cereal..... what a brain fog I have.
Frozentoes - I don't ever think of Lymperdema - out of site out of mind and I've had not problems. And I've been slack In massaging. I'm not going to worry about it till it happends. (me= slacker) they found 1 of 2 cancerous and took out 5 more surrounding to be safe, Can I barrow your 7 year old to help me with my PC and New Tablet? I just don't get it.
klvans - i don't have twitchy eyes but water eyes . looks like i'm crying all the time, which i guess is better than dry eyes.
later you all! your the best! rj
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Chemo #5, Day 2 - I was very tired last night after 4.5 hours of infusion plus another couple of hours of cold capping once we got home. Had an early dinner and headed up to bed by about 8pm. Went in for my Neulasta shot this morning, swung by Trader Joe's to pick up a few things and then forced myself back out to scan my tax docs so that I can send them to our accountant. I usually do the latter at my office, but since I am off work I had to go to a copy shop. Which cost me $24!
Energy is starting to wane again this afternoon and I've also been a little woozy. But taking my meds and trying to push on through as much as I can. A girlfriend is in town for a long weekend, visiting another friend and going to a concert on Sat. Hoping I'll be feeling well enough to visit with her a bit while she is here.
Hang in there everybody!
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Rljes and Magari. I'm thinking of you two as you struggle through the early days after chemo. Those days were always the hardest for me. Take good care of yourselves.
Magari I'm impressed with how much you got done while feeling less than optimal. I don't think I could have managed so well. I hope you enjoy a nice visit with your friend.
Rljes my twitchy, bloodshot eyes drive me nutty. It's such a weird side effect. I can't wait for it to go away. I'm sure you want your eyes to get better too.
I went in for my radiation modeling/simulation. It was an easy experience. I'm having 20 treatments (16 +4 boosts). I opted to not have permanent markings so will have to be very careful with my marker/taped ones. I asked the nurse about potential permanent side effects and was told it can make my skin look suntanned and leathery. I thought the term "leathery" was most unfortunate. I don't want one breast that is tanned and leathery. It gets me that these medical people are so casual about side effects. The temporary side effect is a certain amount of fatigue which doesn't appear until the second half of the treatment schedule. I also asked about how close they would come to my lung and was happy to hear it probably wouldn't be necessary to radiate any part of my lung. I was also happy to hear that the radiation plan has to be reviewed by three different people before it's approved. Anyway I start next Thursday. This Sunday I will be 3 weeks post final chemo.
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klvans- yep all done with chemo. I need to contact my RO and let her know I finished early, but with work going the way it is right now I may not be able to start before April anyway. We just don’t have the staff to cover the regular shifts, let alone me trying to snag out early every day to make it to rads. I will know more once I see March schedule when she gets it out. I didn’t have the heart to tell her to rearrange the whole staff schedule at this late date. Maybe I can still work around it. I just want all this over and done, and I can’t start radiation for 3 weeks at least anyway, so it is what it is.
For this worrying about the “funny” hair growing in, italjed to someone today that told me her dad had a head full of fuzzy gray hair post chemo and it all fell out and his normal black hair came in just fine, so apparently this is all normal. Fingers crossed. It did ease my mind some.
Swimming pool is nearly up to 75, maybe by this weekend I can get out there and get some snorkeling practice in. For some reason I just float and have to keep practicing to dive to the bottom so I can do some good snorkeling in the gulf this summer. That and this fat lady needs to do some laps. I never ever want to take steroids again in my life!!!
Tina
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Klvans and Tina thanks for the positive info about hair. My oncologist said she has seen hair thinning from Taxotere, but usually people who have thin hair to start with and took an Aromatase Inhibitor afternoon chemo. I Amy taking an AI, but I had incredibly thick hair before chemo.
My mom had 14 nodes removed on one side. 18 years ago they took that many for her smaller than 1 cm tumor. All were clear. Thankfully she’s never had lymphedema. They took 3 on me, and I wonder if that’s why I feel heat in the area and my left leg swelled so badly after chemo was done. Thankfully no on sign of arm swelling.
Magari, take it easy and rest. The early post chemo days are awful. There’s no way to describe it to anyone who hasn’t been through it.
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Good afternoon...
I had my oncology appointment yesterday, after my nuclear bone scan this past Friday. I am so happy to report that all is stable. He said he "smelled a rat" with the results of my CT scan the week prior to my bone scan. He said it often happens that bone mets look really bad on a CT and he just knew I couldn't have gone down hill that quickly because my labs were looking better each week. He said a CT is great for looking at soft tissues, but not the bones. So, you can be sure I am a happy camper at this time. I will continue with Taxol for a total of 18 infusions. I had #11 yesterday....so I still have a way to go. After that, I'm not sure. He mentioned a monthly injection of a type of hormone. We shall see.
Wishing all a great day!
Hope
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good for you hope!
I am back from mo visit, i am stable with the med i am on so i feel positive , gonna take for now
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Nonahope - I was getting nervous waiting for your report! . I’m so happy for you that everything is looking and going great with the scans! It makes me feel good that you’re doing okay - and I don’t even know you, but I do know we are all real people here going through a hellish circumstance. 7 more infusions and then what happens? Do they scan you again? How are you feeling with taxol?
I’m on the February blog for radiation, and I’m so amazed some have only 16 rads, whereas I have 35. No one seems to know why some get more than others. Maybe it’s a dosage thing? I’ll have to ask my RO. I’m just comparing similar diagnosis cases.
My back still has pain, but I feel more normal than I had. (May not be next week, but we’ll see). Got my oil changed yesterday for the 900 miles I’ll be putting on my car going back and forth to rads. Got my quote for tree trimming in line, but not yet scheduled to trim my trees, so I’m trying to catch up with my house/yard chores! I want to paint my front door - but no energy for that - yet! So much to do - I’m not letting cancer stop me from being me - I’m going to move my body or else
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Nonahope what great news! I am doing a happy dance for you! I think we are all relieved, lol. I know you tolerate the taxol well so you won't have a problem completing your treatment. I wonder what sort of hormone shot they are going to give you. Most treatments I've heard of are anti hormones... Good to know the information you conveyed re the CT scans. I have arthritis which tends to show up similarly to bone mets.
Blair you are sounding better. Normal is so pleasant for us. I too am bringing my car in for an oil change in anticipation of the driving I have to do for rads. I start mine March 1st. It is funny how different everyone's schedule is. I think there is debate in the radiology world as to how much/many treatments should be given. I don't think it's as clear cut as other areas of treatment. I have 20 sessions and I'll be glad to get them done. I'm so tired of people looking at my boobs, drawing stuff on me, shoving needles in my veins, etc. Don't get me wrong people have been nice, but I just want my body to be my own for a change. I don't want it messed with anymore. So that's my rant for today!
Tina congratulations on completing your chemo! I hope you recover from it quickly. When the time is right you will do your radiation. I figure it has to be easier than chemo but the everyday thing does present its own challenges especially with work schedules. I envy you your nice weather. We've been having a cold spell here which makes my daily walk more challenging.
TGIF everyone.
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Iris...That is great news for you, too!! We just have to hang in here. How long will you be on your current meds?
Blair...Thank you. Yes, we are real people with life changing issues. He mentioned a hormone reducer injection that might be in the picture after the Taxol. Yes, I will have another scan after the Taxol is finished. I guess, once again, the results will determine what's next. I only have a couple of achy days with the Taxol -- so not bad. I do notice that the more water I consume, the less the achiness.
I had 30+ rads back in the day. The biggest pain was going every day.
It sounds like you are getting stronger each day and getting things slowly accomplished...that's great!Kivans...Yes...the injection is to reduce estrogen. I didn't explain that very well..LOL I took Arimidex for 5 years after my lumpectomy in 2010. I asked the doctor if I had stayed on it for 10 years (as some are doing) if it might have halted the metastatic disease, but he said no....5 years is the norm. This injection is once a month and it's for metastatic disease. I don't remember the name of it.
Tina...Congratulations!!! Onward and upward!
Hope
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Hope, i will be on this med as long as it works but they do have me set for a pet scan next month so hanging in. This med i am on while it is 8 pills every day, i am tolerating it well
One day at a time
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glad to hear the good news about your CT scan and bone scan Hope!
I’m off to this evening food market of sorts tonight followed by the last full show of the greatest showman... and maybe a book fair (open 24 hours).
have a good weekend everyone!
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TGIF has a new meaning since chemo is every Friday. Lol, I remember looking fwd to Friday nights. Now it’s a dose of Taxol and sleep the rest of the day. Bones and back feel much better. My hands and feet tingle and fingers peel a little. Hot and cold flashes are just out of control. Is anyone taking anything for these? I just flush and sweat and want to rip my wig off my head in public!!!
My father in law passed away last week he was only 64. Died from aspestos, COPD and possible mesothelioma. We are waiting on the autopsy. We spent his last few days with him on hospice. It has been hard on my poor husband so I am trying to be strong and not so needy.
Going to an annual poker party tonight at friends house with my husband. Hope it cheers us up
Been trying to drink more water, but I find it so hard. Anyone have tips to make it a bit more enjoyable. Bladder is not cooperating with my schedule. : )
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Hi Everyone Chemo #5 Day 5
I have never been so tired in my life. I had to rest walking up the hill from my mailbox. PLatlets at 98. But MO didn't say what to do to help. Lot of Leg cramping, My Left hip was getting better since Chiro visit, but since I'm too tired to go to a second visit, its reverting back to being painful. I just wish I could sleep. With the Hot Flashes, the Hip Pain, the new spine and knee pains, cramping in the upper back thighs and calves, I wake up all night long - oh, plus having to pee all night long. Chemo # 5 Is the worst.SDK8 - I make a mixture of Poweraid, Seltzer water, water and ice several times a day. But I enjoy water. At first I put a frozen strawberries in my water - when things didn't taste quite right. My fingers are tingling, but I have Raynaulds, so not sure if its that or the Chemo. I also have calcium deposits that break open - again not sure which is the cause. Thankfully its about 45 degrees out and I can open the windows, so Hot Flashes aren't so bad. Poor Truman is cold tho. He goes and sleeps in the utility room where the heater is on.
I've probably said this - (Chemo brain is getting so bad - I put pepper in the dog food instead of my food) I'm having a consult with my Dermatologist next week to discuss Radiation. Whether My skin can take it or not. hoping he says its not a good idea. I can't imagine going daily. But the RO suggested I start and could stop anytime I wanted. I want some stats.
Nonahope - good to hear you have good news about your bone scan.
Blair - Glad to hear your getting some relief from your back pain.Everyone take care, rj
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i have hard time drinking water so i drink herbal tea. No cafeine and lots of flavors
Doc told me i looked tired yesterday........ummmm......like stress doesnt affect the way i look?
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