Starting Chemo, November 2013 Group
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hello Batchmates- November 2013 Chemo Group!!
Even I began chemo same time.. have been reading your posts, its end of feb now and I guess most of us would have completed chemo or about to finish it.
I finished my last taxol 4-5 days ago and although for everybody in my family, my chemo is over...for me it is still on, as long as the side effects remain.
Still struggling to cope up with the cumulative side effects of taxol..burning and itching sensation specially under my feet makes me miserable sometimes. Need sleeping aids in the night. Have tremendous lack of energy and a few days ago I suddenly forgot which month of the year it is...after 2 minutes of effort I realized..oh, its feb, my chemo ends this month!! I did hear of something called chemo brain, but now I realize what it is..after 8 rounds of ACs and Taxols.
Post this large scale damage, from head to toe and the havoc chemo created within us, I hope its bye bye to cancer forever for all of us. I feel shocked when I think, that man could reach the moon, walk on space, find a cure for so many diseases, conquer and understand so many mysteries of nature...yet, could not understand cancer completely till now, a disease which is as old as civilization! And that makes me feel helpless sometimes.
I will be in remission from now on. Since I got triple negative cancer, I will have the chemo port inside me for a few more years and as my oncologist says "If you somehow can make it for the next 4 years, I can declare you cured". I hope I do well.
Lots of love...as we together move on with our journey, back to normal lives!
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sml....yes im FREEZING when hubby is frying!! glad to see hair coming!!! im being patient! its slow but maybe thicker at snails pace@!! thanks for your prayers@! DITTO TIMES TWO back!
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has anyone lost nails....I think....duh....I asked back but cant read beyond two minutes ago with dingo brain!! lol!!! I feel like a ditz@!!
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can u believe I posted on Facebook two days early happy bday to my hubby of 23 years.....yes 23 year's on Valentine's Day btw!! Unreal he kept me this long with all my I ###$##hhealth pbms! what a guy!!
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Walked 3/4 of a mile today and it felt great. This is the most I've been able to do since my surgery six months ago. It took 20 minutes but it is wonderful to be able to reclaim some form of physical activity post- chemo. And it only gets better from here. Wishing all of you the best week possible!
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Yahoo quirky girl!!!! one great thing is now im walking .. slowly. ...but without crutches! super YAHOO!!
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I did some walking with my son over the weekend, and got to say it made me feel so much better. On Saturday, we were out and about for 2.5 hours and I managed fine. I see that most of us here are done, but I still have two more treatments of lovely Taxotere.
One coming up next week, and then one more at the end of March. Can't wait for this to be OVER!I too suffer the ups and downs of my body temperature. Last night I couldn't sleep because I was steaming hot and now I am off to take a bath because my body is freezing.
My brows and lashes continue to thin, so it'll be a while for me to see them coming back!
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paulette: Did you have crutches at some point? Was it because of your toe?
Wally: Sorry to hear you are having hard time with Taxotere.
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crutches yes...since 2005.....due to avascular necrosis in both hips...will still need hips replaced (but waiting on a miracle) having bc surgery on right and port on left plus worse carpal tunnel made it impossible to use them. thanks to neulasta makeup ng me HAVETA walk it strengthened my legs enough to walk without them! it will just cause hip surgery sooner but it is really nice to walk without them! one yahoo for that ouchie med!
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Been away for awhile, and was trying to catch up... but you ladies post so much stuff!
My Flamingo has been doing really well, and her last chemo (of 6 Taxotere/Carboplatin/Perjeta and then another 6 months of Herceptin) will be March 6th! Yeah!
She has lost her hair, and try's to be private about it. I tell her that I think she is beautiful, no matter what, and she is, but.... Its not the Flamingo that was. And she would like to have that memory. I try to look like I am doing something else when she is going from wig to little hat or back... I want to respect her as well.
The SE for her have been as listed here... The "runs" has been the worst. You just never know when they might start. After the first couple of chemo's you think you have it licked by day 10, and then here it comes even later.. Yuck.
However, you can only eat what you can. Her stomach has been rolling, no matter what she eats.... There is nausea, but very little retching, and only in the beginning.
Her big problem, since she had a lumpectomy, and the margins are an issue, so she gets to go back for the full BMX, is the lymphedema in her left arm. She has been to two different PT offices, and one was gentle, but didn't seem to making any progress, but the second really HURTS. So, any thoughts?
She sees the end of the road, she was planning a big party in August with her sisters. Sort of a "screw cancer" party.....
Rich
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Hopefully this will give you girls a little smile for your day......
Saturday night my hubby and I were supposed to go to a good friends 50th surprise Bday party. I had a major meltdown as my eyebrows have left town and I was trying to draw them on and for the life of me could not get them even or straight. There was no way I was going without eyebrows, have no lashes either however I can live with that as eyeliner helps. I spent the rest of the evening hiding in our bedroom. Today my wonderful husband went with me to the Clinique counter in Younkers and helped learn how to draw my eyebrows on. It was hilarious. Poor guy was surrounded by the makeup lady from Clinique and all the other ladies from makeup and fragrance departments came over to help and watch. They just fawned over him and had him blushing, which is no easy task. I tried to get him to let then ladies thin his brows out for him but he was having no part of that. We did end up getting a bunch of free samples and stencils out of the deal. Will have to take him with me shopping more often! I just had to share with you guys as not sure if anyone else would see the humor in it as I do.
Does anyone else on the weekly Taxol have back pain? For the last two weeks I have had pain/burning on my spine in the upper back area. I have never had pain like this before and am thinking it is from the Taxol?
So glad to see you back Paulette!
Wally, hope your side effects from the Taxoterefo away!
Amazonwarrior and Quirkygirl, I envy you your energy and strength to get outside and move.........I just make it through work and house chores, then I am done for the day. I so miss my daily walks.
Pam
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Rich: It is great that you are giving your Flamingo the support she needs at this time. The 'screw cancer party' sounds like a good idea! Perhaps Flamingo might want to visit this site, as she could benefit from having a group support on this difficult journey.
Pam: It must have been amusing to see your hubby learn to draw the brows. He sounds like a real sport! Since my brows have thinned quite a bit, I had to learn to fill them. I'm using a stay all day waterproof brow colour. It has a tip like a fine paintbrush and is easy to apply.
Paulette: I'm glad for you that you don't the crutches to get around! It must feel great!
Quirky: It sure makes me feel better if I can do some walking! It seems I'll be stuck in the house for a while as the weather turned nasty cold again! Darn it! WHEN is old man winter finally going to break its back? We are supposed to have some Arctic air for the next 10 days! I NEED spring!!!!
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Northwinds- I too have the upper back pain with weekly Taxol. The fatigue is killing me.
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Final chemo was today and I am more exhausted than ever!
Rich, you are a good husband. Losing hair is very dramatic for many and it is good you respect her privacy as far as that goes. I am the same and my husband respects mine. Will your wife be having radiation? Did her PT show your wife how to do manual lymph massage to move fluid away from the lymphedema arm? I think that would be helpful and something she can do at home.
northwinds, your husband sounds like a sweetheart. I understand how you feel about eyebrows. I have back,pain with taxol and rib pain too.
Quirky, BigT, Amazon, Paulette, it is good to hear from you. Have a good week everyone, imam bracing for the overall bone pain that will!hit soon.
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Northwinds: there are stencils for eyebrows??? and Clinique has them? I have been struggling with eyebrow pencil; never had to use one before. I can get the right eyebrow pretty well but just can't seem to match it on the left.
All: has anyone seen the movie "Love Is All You Need"? Partly in Danish, partly in English. The plot centers around other things, but it is one of the truest, most sensitive portrayals of a woman with cancer that I have seen. Course, I suppose any one of us would swoon if Pierce Brosnan fell in love with us while we were wearing a wig over chemo-bald head. It really conveys the sense of the woman feeling ugly after chemo, particularly as her husband messes around. Incredibly tender moment as Brosnan strokes her newly grown hair.
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woohoo Smrlvr!! You're done! The bone pain may be coming but it will be temporary and before you know it you'll be feeling better for good! Happy days to look forward to and count on!
We're like a big dog sled team all pulling towards a common goal. Every victory celebrated and no one gets left behind. Each one of us will be able to celebrate her last day of active treatment with the rest of the pack. Your wife, too, Rich!
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Ellen, they do have stencils. I had no luck with using a eyebrow pencil, just could not get them to look right. We actually bought two kinds from Clinique today. One comes like a eye shadow and you apply with a brush and the other is more like a eye liner. The stencils they gave me came in three different sizes, narrow, medium and thick. I tried using them tonight however found I like the brush and powder best when I just follow the natural curve above my eye. The stencils have a lot more curve to them than my natural eyebrows do and I am just not used to that much flair I guess. Will keep practicing with them.....
I was worried about my back pain. When I mentioned it to my doctor he said I shouldn't be having back pain from the weekly Taxol and mentioned doing scans. Right away my mind goes into overdrive. I had read somewhere that some women do get back pain from the Taxol. I am thinking/ hoping that is what it is from. I hate how any little ache has me thinking the cancer has spread. I hope this doesn't become the new normal for me and once treatment is done the fear of recurrence or spread fades some.
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will surely watch the movie Ellen! A short trailor is there in youtube. Thanks for recommending
northwinds: Taxol has a cumulative effect. For those who are doing 2 weekly taxol, the side effects become more after their third dose and for those who are in weekly taxol, SEs increase later, maybe after the 8th or 9th. The cumulative dose of taxol is more for weekly taxol candidates. For me ice and Lyrica seems to give some relief for the neuropathy I developed post taxol.
I guess we all are fortunate enough to get the complete treatment. I have read about so many women around this world who die because they couldn't get treated. The cancer battle, surely needs 2 things..1) family support 2) finance.
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smrlv- Congrates on being done with chemo!!!!
Northwinds- I attended "Look good, Feel Good" make-up presentation at my cancer center. The did teach and show how to draw the eyebrows. I haven't had to use the technique yet, but they're thinning quite a bit.
BanR- I would agree the weekly Taxol. I felt great for the 6 of them. The last 2 have hit rather hard. On the weekends I've tried to do some err ens, I had to go home at take a nap for a hour. Neuropathy had started after #7.
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hi all! my back pain was really bad w tax.....it made any normal pain places double worse! now like six weeks done still having rounds of it and add my brows, lashesb and nails going ...doc was surprised w nails...she hadn't seen it so severe. Guess its from my lupus and mixed connective tissue pbms and add vascular pbms. at least they are starting to grow back slowly! Now if my hair will start a bit more! I look like the aliens just released me from the mother-ship and replaced my DNA!! LOL!! I just gotta laugh! !
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Hi Folks, I haven't posted here before, but recently found out some info that has pissed me off in re: the drugs given to me during treatment for BC. I was almost killed with my one and only chemo. Taxotere was the culprit. I "failed" all three AI's b/c of s.e.'s. All of this could have been avoided had my MO paid attention to the Cytochrome450 genetic testing. Of the six genes tested, I have abnormalities in three. All are major players in the drugs I was given. Had I been tested, it would have been known. The drug choice and /or dosage modifications could have been made
Rather than rewrite the details here The link below will take you to a thread that has the posts that I have written in the last few days.
I'm not trying to sell Genelex. Other laboratories are doing genetic testing. But Genelex is the only company right now that provides the application of the genetic results to the drugs we are taking. Other companies, I'm sure are trying to build the same business model. It's the future of drug administration.
Why? Patients will no longer except being experimented upon with drugs that can harm them. If the docs won't do this because it's the right thing to do it. Then we have to PUSH them into doing the right thing.
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its so nice to keep hearing from everone! rich love for your support for your sweetie! ssml Yahoo for last dose! I give props to everyone! on cell so heard to list all by name without phone wacking out! ULTRA has a brow kit too. various manufacturers. ...! my heart is praying for those still dosing chemo.! I am clueless for my next step. After the bizarre hospital visit im not sure what's next. Dont have onco appointment yet...but they said none available till may! blows my mind since last chemo was jan 13! still have port....no idea when that will be gone...feel like doc just dropped me after the fiasco with the idiot hospitalist who was more freaked out by my pain meds than my dropping blood count and new brain cyst......I dont even want to go back ever due to PTSD caused by the 74 day stay in 2005...now is even worse after the idiocy with the hosp stay a few weeks ago....they said originally I need five years of anti hormone meds but all is on hold...my onco was so confused by the nutty hospitalist that shes confused. ...I had to go to my primary doc to even get a neuro consult! our medical system has gone to pot with all these changes in the insurance system! it is utter insanity..... hopefully yall are fairing better. huggs to all my beautiful overcomers!! thankfully I have my Faith to uphold me!!!!!!!
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Hi Ladies
I'm on day 5 of second taxotere and HURT. The swelling seems to be amping up my arthritis to the point that I cant walk, sleep or generally do anything. I am not sure what else I can do right now as I am on a lot of drugs and nothing seems to be working. What have others taken for pain and swelling???? I am trying to stay away from Oxycondon, I cannot sleep on it. Any other suggestions??
Northwinds - Loved the eyebrow story - Your DH sounds like a very sweet man.
smrlv - Congrats on the last Chemo!!!
All - who is left still in Chemo? In the spirit of no women left behind, I hope those still in Chemo are seeing some light at the end of the tunnel. Perhaps we need a virtual 'Nov Chemo girls'' party when we are all done so am wondering who will be last to finish?
Ellen - I will have to get that movie, but will wait a bit. I am sure I will blat through it right now.
Paulette - It is good to hear from you. Sound like you have additional medical stuff to unravel. I know the feeling of how frustrating that can be when there are a lot of unknowns and it takes so much time to get things figured out. My thoughts are with you.
Lisa, quirky, all - I am sure that somehow I am and will be a different person because of BC. I am still transitioning into what that will be but right now I really notice the 'gap' I have with my friends and family with respect to the significance of things which does feel lonely. So much of our lives seem to be centered around things that don't really matter and I see and hear this more as a result of BC. Anyway, it is my hope that BC will lead me down a path that allows for a more meaningful life, whatever that might look like.
Have a good day ladies
Judy
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Hi all Taxotere/taxol pain people: this is the crippling pain that plagued me during my treatment, and still haunts me 5 weeks later. Mine was primarily in my back but moved into my legs too. What to do? Have your MO actually assess you: mine assumed it was bone, only when I was touched was it discovered it was muscle. I was given baclofen, a very nice anti-spasmodic, no SE. I got a lot of relief from epson salts baths, just like grandma used to suggest. Plus pain pills. Lots of pain pills. Yes they disrupted my sleep. I still have sleep issues, the nurse practitioner at the RO office suggested adding 2 Benadryl to my bedtime ritual: helps immensely, non-addictive.
Paulette, is it time to transfer to a MO at a major medical/teaching center? I'm right about the same place as you are with hair and eyebrows, boohoo.
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I have 6 more Weekly Taxol to go. Then on to Rads.
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I still have two more taxotere treatments to go -- March 10th, and March 31st. Then rads, of course, for six weeks. There may be ovary removal or hysterectomy in my future as well, not sure about that yet.
jab, I have pain from taxotere, but just a lowest-possible-dose hydrocodone takes care of it for me, and even at its worst, I only seem to need two of them per day, so I'm no help.
I've been feeling remarkably normal lately; normal enough that I start thinking I can go start getting the housework caught up, but I am reminded pretty quickly that my hemoglobin is sitll quite low (another transfusion in my future maybe blah) when I get out of breath and tired pretty quickly. Oh well.
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Lisa - have you checked your heart rate? I ended up with a chemo elevated heart rate and the symptoms were fatigue and shortness of breath. I'm on a beta blocker to keep it down.
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Hi all- I took a week off of posting and reading and just now caught up...was a busy week! I have felt WAY better physically and have been going all day every day til after dinner! I think it is helpful to keep going, I was exhausted the first few days and now I have more energy! Or maybe it's just that magical time of 6 plus weeks PFC?? Not sure, but I am happy!
Paulette! I was SOOOOOOOOOOOOOO worried about you! Praise God you are here!!! yippppppppppeee!~
My hair is growing and I will post a photo tomorrow...my eyelashes have a couple of spots where they have fallen out- AND I am using latisse! My eyebrows NEVER came out or my lashes...My hair is dark/same color as previous...so there all of those 'knowitallpeople that have never had cancer!" everyone I meet tells me what my hair will be like...really?
Ellen- love the Amazon photo :)Jab- I started the Tamoxifen last week and have had zero problems in fact my hot flashes are a little less frequent at night! So I am thrilled with that! AND so happy to have an extra line of defense..I am supposed to take it for 10 years but he said after 18 months and continue to have no period I will be in 'menopause' for real and change to aromatase one...not sure if I will want to as no side effects with this...we will see.I am walking mile and a half on the warmer days and going to PT 3x/week for my arm ROM and some swelling which she says isn't lymphedema but we will see...it is getting way better...still not 'working out' as I previously did but I will try next week to add that on...I am WAY better emotionally since I feel physically better! Praise God! There is a light at the end of that awful chemo tunnel!~I really feel almost 'back to normal' if only I had hair!!! I cannot believe how long it is taking to come back! I had no idea I guess...
Pat- I still haven't found a good 'bra' or anything I like to wear over these things...I am 32D and it feels weird to have them touching my stomach area...I am alternating between camisoles and a tight bra that feels awful and I bought some lacey things at Victoria Secret that are pretty and just a little support...I really haven't put much time into trying them all on at a store except the VS as it's in town here...so sorry about your son, I KNOW you all will make it through.
Northwinds- LOVE the eyebrow story and your husband sounds sweet!
We are going to Colorado next week and I will see my PS and BS while I 'm there...I haven't seen them since October so I guess I am due...my daughter at home (15) is going on a mission trip to El Salvador and I knew I needed something to occupy my week with her gone and we are excited to go and visit our great friends there! It will be a wonderful trip...my PS mom is a BC survivor of 5 years now and very encouraging and wonderful through all of this to me, we are staying with her...
smrlvr- EVERY single woman I have met and have encouraged me have had had lymph node involvement and they are all 7 and 4, and 10 and 20 years out cancer free! They all had large tumors as well, 4cm plus! So if you ever want to talk to one of them let me know, they are all great!
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Jab, my taxotere pain started on day 5 of the first one. And I have 3 more. My last one won't be until April 21.
Smrlvr, congrats on your last visit to the BGC!!!
Northwinds, funny about your hubby learning to draw eyebrows. I still have a bit of brows and lashes but they are leaving fast.
WBC yesterday wasn't so good. It's the first time I've actually been warned about crowds and washing fruits and veggies good. I wore a mask at work today, I think a lot of customers thought I was contagious because they seemed to try to avoid me. The edges of my heels are red and hurting. The nurse seemed concerned but they decided that I should try to handle it with ibuprophen so we could see how the first infusion plays out all the way if I can. Fingernail beds are already red and sore also. But, hey, I feel nearly human today, and things are beginning to taste right finally.
Someone today asked me how my day was. My reply? I'm up and walking so it's a very good day indeed.
Hope everyone has had a good day.
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Hello ladies, even though I am done with chemo the SEs linger on. The pain came earlier and is worse than ever before. I am in bed trying not to move. So all of you who aren't feeling well this week, I am with you.
Audra, you are right. Everything looks positive when we feel good, and I'm glad you are feeling good!
My daughter called from college earlier and she is telling me she thinks she has kidney stones. She went to the health clinic and that is what they told her. They gave her something for pain, but I am wondering if there is anything else that has to be done. I feel,too crappy to drive up there to take her to,the hospital. I am hoping my husband can do,that on Friday. Now I am worried so I am going to dr. Google to see what these kidney stones are all about. I wish I didn't feel,so sick. I would be there now.
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