Has anyone started a forum for Chemo in Dec 2008?
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TX#5 - Day 3 - This is a rough cycle! I slept yesterday from 3PM until 8AM this morning! Nausea & diarrhea on top of it. Phew... I'm still pretty tired and have a cold on top of it all, now wondering if skipping Neulasta was such a good idea. For the first time last night I told hubby I didn't want to finish chemo! I know I will, but I sure don't want to, it keeps getting worse & worse
I went to my lymphedema therapist yesterday, I thought she was going to cry when she found out I had cancer. She is such a sweet lady. I'm not going to start therapy for my foot again until I'm done with tx for a couple of month, but I wanted to get baseline measurements for my arm. My arm is fine, my foot is bigger than when I first saw her last year! She did tell me to keep my arm moving during rads, lift it up and put it behind my back a few times a day to keep it moving. She also told me to ditch the wig (not that I wear it!) but she says hair grows back nicer & quicker without it, and when the hair grows back and it starts curling a little (1/8-1/4") to trim it, she says it will grow faster & nicer after.
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Caroline -I hope you get some relief from your nausea and diarrhea soon! Yuck! I am so sorry you are having trouble with the SE's this treatment. You would think over time they would be able to get them under control. I'll be thinking about you today! Sonia
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Thanks Sonia, nausea & diarrhea seems to be gone
Now if I could get rid of the cold! I hate not being able to take Vitamin C. SEs really haven't been THAT bad since I started chemo, but the fatigue is definately worse with each tx. Only 1 to go... -
Hey All - I am trying to get caught up on all the posts. My computer was down for over a week and I was away taking care of my mom over the weekend. It seems that most of us are getting through all of this and for those of us still getting chemo there is a light at the end. I was also very scared about finishing because evern though I hated going, someone else was checking me out every 10 days and now I am on my own.
Smivog - I am sorry to hear about your MIL. And it is especially hard since you are so far away. I will keep her in my thoughts and prayers.
My mother is doing ok, but she is losing weight and is getting very frail. But she still has a positive outlook. She just amazes me. My SIL is home from the hospital, but has to have all of her food through the food processor for her. She can't have food because she can't swallow properly. She meets with the dr. next week. I just hope she gets some good news. So much is going on. I feel everyone around me is getting sick with some kink of cancer and it really really S***!!!!!!!
Well I hope everyone is doing ok and I will check back in later.
Hugs to all,
Colleen
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Hi all
I'm so sorry for all of you who have family members who are ill. This is all so hard enough to get thru without worrying about loved ones.
I went in for Tx 5 today. Onc said he can't do anything more about the edema than he has without hurting me. He asked if I can get thru this and the next Tx. He really doesn't want to reduce my dose for the last Tx. Of course I can. I will. I asked him what kind of follow up there is after chemo. He said he doesn't do regular blood work or PET/bone scans because they are not reliable. There are so many false results and all it does is cause a lot of anxiety. And allows him to buy a new Mercedes. ( they have their own scan machines.) He said he won't order unnecessary tests. Do any of your oncs feel that way? I told him I'm starting to panic a little about not coming in and seeing him every 3 weeks. He said that's real common and he tells his patients that after chemo is life. Just like everyone else. Worry about the economy and politics and global warming. Just like people who never had chemo. I asked him then how do we know if there is a recurrence or mets. He told me that my oncotype results show that with chemo and hormone blockers, my chance of recurrence is very low. So my visits to him will be social visits I'm paying for. But I need to make sure that I do the other tests that are appropriate for my age. Like my gyn, primary care and colonoscopy etc. So, I'll know if there is more cancer just like the ordinary non-cancer person would know they have cancer. Just like I found the bc. I just move on and live life. It all makes sense but how do I do that? I feel like it will always be in the back of my mind that there might be something left. So, even tho I have one more Tx that I don't know how I'll force myself to get there, I'm scared to not go anymore.
My newest and one of the most disturbing SEs is that my fingernails are coming loose. I put hard as nails on them and cut them short. That seems to have slowed things down but I don't think that has stopped it. Anyone have any suggestions?
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Well, I did #5 of T/C today, one more tx to go! That'll be March 24, then I am done!
TX was pretty uneventful today as usual. Tomorrow I go for Nuelasta, then the "FUN" begins! I will take the Claritin and see how that works.
Onc gave me something for the acidy stomach, don't remember what it was because I took the prescriptions to Walgreens after chemo, and they said that it would be about 2 hours. I said I'll pick them up tomorrow. I just wanted to go home and sleep...which I did for 3 hours. I hope that I can sleep tonight. I feel OK now, just didn't have much appetite for supper. I had half of a baked potato and some H2O.
Well, time to take my pills and go to bed. I hope that all of you ladies are having a great evening, and either relieved that you are finished with chemo, or counting the days until you are done! It will feel great to be done with chemo!
Carol
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Firni, my onc is feeling the same way. I didn't even get any types of scans BEFORE tx. He says I'm better than any machines to know if cancer is back, to "look" for any pain that doesn't go away with normal meds. Like back pain that won't go away and that isn't causes by any activities like gardening and such. The way they explained it made sense. He won't even do the cancer marker blood test, he says it's not it's time yet!
Well, dealing with a nasty cold. Today is day 4, so I'm really dealing with my worst days, extreme fatigue so it's hard to tell if SEs are from chemo or cold. I did have a fever last night, but I'm fine now, cough & stuffy nose but nothing yucky, debating if I should call them or not...
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Firni,
My oncologist favors the PET/CT combo scan because he says it's the most accurate. I don't know yet what tests he plans post-chemo, but I do know that he sees patients every 3 months for the first year. With ILC, I would hope that he'll order ultrasounds as well as mammograms from now on.
Were your nail beds sore, and they are just now lifting? That scares the heck out of me because my nail beds have been sore for weeks now and I have 4 more taxotere treatments. The pain is getting excrutiating, but I've got to soldier on because I work on the computer all day long.
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Hey Firni
My onc sees me every three months for a year to check my blood counts...especially since I ended up slightly anemic. He doesn't do any scans. I asked him about the markers and he said that they are not that accurate. I'm looking forward to not having to go back every week!
My nail beds were really sore after my final TC treatment and it felt like the nails were going to come off....I'm coming up on one month from that treatment and they are feeling back to normal and I didn't lose any of them! The would hurt if I bumped them, etc....but it has gone away!
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Firni - my oncologist also does not do scans, etc. as regular follow up, however he will see me every three months for the first two years (I am triple negative).
I have one more TAC. I've periodically had one slightly sore nail bed (on my left big toe) -- but it goes away after a few days and none of my nails have lifted. I've had a manicure/pedicure every three weeks - with clear polish, no cuticle cutting -- aside from the white lines on my nails, they look pretty good. And actually used bags of frozen peas on my hands the taxotere infusion. What a sight, a grown women sucking on ice popsicles with frozen peas on her hands.
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Good morning ladies. My nail beds aren't sore but my fingertips are slightly numb and feel like they've been burned. I keep running my hands under super cold water and dipping them in a cup of ice cubes.
My Onc also said that they will run bloodtests on me every 3 mths, no scans. He said they will watch me very closed for about 10 yrs. Sounds good to me!
Cat, are your aches subsiding a bit? Mine are pretty much gone.
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Caroline, I developed a cold the next day after my 1st Taxol TX. It was horrible so I totally understand how you are feeling. Just rest as much as possible and really push the fluids. That and time is all that seemed to help. I did call my Onc when I had my cold and they told me it was ok to take OTC cold medicines to manage the cold symptoms but basically unless I had a fever I just had "ride it out". He did prescribe a 7-day antibiotic for me to take "just in case". You might try calling your onc, it couldn't hurt. *hugs*
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Lainey64 - yes, my onc also said "we would be joined at the hip for 10 years." -- although after the first 2 years, the visits will be every four months and taper down to two times a year. And he does do blood work every visit. I think this is because we are both Triple Negative.
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Hello Divas:
I have not posted for a while here, but have kept up with posts. I just wanted to say that my onc recommended vitamin B6 as well as a script for Glutomine. It is to prevent fingernail loss and pain. You might want to ask. Do not be afraid that you are stepping out of line they will freely tell you there opinions.
I have completed #4 of 6. TCH and this one was the hardest. I have elevated liver count and a, pretty darn pooped. But it is day 4 so I have no where to go put up. Hanging in there.
You are all in my heart.
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Hi Ladies,
Thanks for all your input and suggestions. I go in to get my Neulasta shot today so I'll ask about the Glutomine. I already take a B complex. I'm on Decadrone so I'm feeling great today. I taper down tomorrow and Sat. so by Sunday night I'll feel pretty bad for the rest of the time till the next Tx. I wish I could just take the steroid the whole time. I'd take the puffed face and weight gain to be able to function. Onc said no. He would prefer that I rest when tired, ( my body knows what it needs) and to take pain meds for any pain. So, that's the way I'll go. Just one more time. That is now my montra. And I'm not quite so reluctant to take stronger meds.
My PS office called yesterday while at I was at Chemo Hall. They want to schedule my exchange surgery for May 27th. That will be 9 weeks after my last Tx. He told me we could do it at 4 weeks after at the soonest. So I'm going to call and see if we can move it up to the last week in April or the first week in May. That will be 5 to 6 weeks. Should be fine. Onc said I can get the port out two weeks after the last chemo. Mine doesn't bother me so I'll do that when that surgeon is available. Then Done Done Done. No radiation. Just Tamox. I don't have any reservation about taking it or what ever since my oncotype came back so high.
Get lots of rest Divas. Take your drugs and feel better fast. The last few Tx are the hardest but we can get thru them. There IS a light at the end of the chemo tunnel now.
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All,
I am so glad to hear so many of us are finishing up soon! Yea!
My onc said he would see me every 3 month through the fist two years and then reduce over time. No blood markers regularly. He too said they are unreliable. He said I would know if something is up so my visits will tell him if tests need to be done. I understand the feeling of being let go without a parachute. One more step we can go through together!
I am thinking about everyone who is still having chemo! You can finish!
Good Day!
Sonia
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Hi Divas! I finally called my onc today since fever came back, but very low grade. With everything I told them, he said it sounds like a viral infection, not much they can do, so OTC until I feel better. I am feeling slightly better, but looks like I'll be stucked with a horrible cough though
That's what I get for turning down the Neulasta 
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31 days past TC #4 - Still no hair growing, but still have eyelashes and fingernails! I think the fingernail/toenail thing is individual..... I never did any of the ice bit and never had a problem with soreness or lifting. But my WBC was totally wiped out and had to take the Neulasta shot and many of you have done fine without it.
The flu is going around here and I caught it from my daughter; fortunately I had the flu shot so I only had a couple days of misery - and was able to continue with the radiation treatments. Radiation (#12 of 16 dose dense sessions) has been easy - very slight reddening and tenderness. Again, some people have a tougher time but my radiologist says it is hard to determine who will have the problems.
Lisa - I definitely need to live near you and take your Zumba class! I got on the scales and found I gained 10 lbs during chemo. I was bad last month in exercising and now that the weather is improving, I need to GET OUT AND TRY RUNNING! (I am planning on being very pathetic at the beginning)
Reading all your follow-up plans makes me realize that I have not thought that far ahead, my oncologist has me scheduled for the end of April and I will be getting a new mammogram after radiation.
Still thinking of you all and am praying for wisdom in decisions and strength in recovery.
Mary L
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Mary, if all you gained is 10 lbs, I would be thrilled! LOL
Divas I have an odd request, before everyone goes their own way... I scrapbook, and I plan on making a few pages on my journey and would like to include you all as this would be much harder without all of you. So, here's my odd resquest.... For those of you who don't mind, I would like to have pictures of all the wonderful ladies that helped me through this, but if at all possible, I would love to have bald pictures
You don't have to be scared about me sharing those pics, for my own personnal use in my own photo album. I think you can attach pictures throught the private message on top or I can give out my email. Thanks I must be feeling better if I'm thinking about scrapbooking again! -
Hey Mary...most of that is probably the residual effects of the steroids and other drugs...it will come off. I had gained about the same and it is slowly coming off. And I've been exercsing every day...but drugs do that to me! Makes me mad! LOL
Caroline...you can use my bald picture...
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Texas, Sorry I forgot about your question. My nail beds were NOT sore. My fingernails are usually kind of long and they were looking good. Then one day last week it felt like the nail pulled back. It did't hurt just pulled back. Now two of my nails are completly white almost to the cuticle and all of them have white areas that seem to be growing. According to Onc, at this point there is nothing to be done. If they fall off, they'll grow back after chemo is done. That's his new line at the end of our visit now. "After chemo, this all goes away." Anyway, Zuffa said use ice during infusion and that is most likely going to help you the most. My onc nurses said not, but people who've done cold therapy haven't had problems. Use Hard as Nails. I'm also rubbing Tea Tree balm into my cuticles to encourage good new nail growth. I don't know if any of that will work but try anything. I have a feeling this is going to be gross.
Mary L where is your hair?? A month and now growth yet? My hair hasn't done any growing during chemo, but I know a lot of ladies have to keep shaving their heads to keep it under control. Maybe the rads is keeping it from coming in?
Sorry for all of you who have had or have the cold and flu. It is that time of the year and I'm surprised more of us aren't sick.
Hang in there Divas!
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Good morning Divas. TGIF! It's the end of another long work week for me but I'm happy to report that I made it. I had some aches from the Nuelasta shot last night (they are very distinct from the Taxol pains). I'm better today but oh boy are the hot flashes kicking in. I was talking to someone earlier and could feel the heat coming over my face. Yikes! I don't have any sore nail beds but darn my fingertrips are tender.
I have already scheduled my diagnostic mammogram for the week after my last chemo. My BS wanted me to get in done before rads because she said I'll probably be pretty tender after all that mess.
Caroline - If you visit my caringbridge site (address is in my signature) you can pull my bald pic from there!
I hope everyone is staying well and avoiding the various colds and flu bugs going around. I officially started a diet today! My onc center weighs me every 2 weeks when I go in for TXs and I don't want to see another gain next week!
Hugs to all, Elaine
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Updated list:
mimiwhite #4 1-Feb 4xTC
mmliv #4 3-Feb 4xTC
Brenny # 4 4 Feb 4xTC
isasayers #4 6Feb 4xTC
horsercn #1 9 Feb (TH) 4xAC
+12 Taxol+Herceptin ptjen #4 11 feb 4xTC
CindaD #4 12-Feb 4xTC
swest #4 13 Feb 4xTC
iktracey #4 17 Feb 4xTC
apfuentes #4 17 Feb 4xTC
bkokie #4 19 Feb 4xTC
Texas357 T#4 24 Feb 3xFEC
+9xTaxotere Catrenae T1-T12 26 Feb-14 May 4xAC
+12xTaxol Romiles #4 26 Feb
cebula #5 2 March 6xTC
Majanumba1 #5 2 March 6xTCH
Bold #4 2 March 6xTCH
sdavis #5 2 March 6xTC
Texas357 T#5 3 March 3xFEC
+9xTaxotere DrDecker #4 4 March 4xTC
Firni #5 4 March 6xTC
Texas357 T#6 10 March 3xFEC
+9xTaxotere Lainey64 #4T 12 March 4xAC
+4xTaxol simvog T1-T12 13 March-29 May 4xFAC
+12xTaxol LindaBusEd #6 18 March 6xTAC
zuffa #6 18 March 6xTAC
cebula #6 23 March 6xTC
Majanumba1 #6 23 March 6xTCH
Bold #5 23 March 6xTCH
sdavis #6 23 March 6xTC
Texas357 T#7 24 March 3xFEC
+9xTaxotereberrypatch #6 24 March 6xTC
Firni #6 25 March 6xTC
Texas357 T#8 31 March 3xFEC
+9xTaxotere Texas357 T#9 4 April 3xFEC
+9xTaxotere Bold #6 13 April 6xTCH
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Hello all,
I had Taxol tx #2 (of 12) yesterday. Made it through fine, just groggy from the Benadryl. Napped a little in the afternoon, then couldn't sleep last night! The hot flashes and night sweats kept waking me up! I should have taken a Lorizapam to sleep through it, but by the time I thought about it, it was too late. I would never have been able to get up at 5:30 this morning! I'm feeling ok today, just kind of waiting for the aches and pains to begin again. I just started feeling normal on Tuesday and then it was back for chemo again. I don't think I'm going to like this once a week thing!
Hope everyone manages to have a good weekend.
Cat
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Thank you everybody for your support. My MIL is in the hospital. They are running all kind of tests on her and Monday she will have biopsy. The doctors told her it is bad, the lymph nodes are affected as well. We are praying it did not spread to other parts.
I apologize for my short note but I am feeling under waters these days and not really in the mood for anything.
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Simvog, sorry the news about your MIL isn't better. You take care of yourself, okay?
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simvog - what can I say -- so sorry to hear that you did not have better news about your MIL...I wish there was something more tangible I could do for you.
Texas 357 - I noticed you responded to DrDecker's "Suicide Ideation" thread today -- firni and I just exchanged messages about her on the December Diary thread -- I have been worried about her since I saw her new thread on 3/2 -- her last TX was scheduled for 3/4 -- but she has not posted since starting that new thread..
This battle is hard on all of us and unbearable for some. I hope she's okay and pray for us all to go forward with strength.
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DrDecker - I am praying for you. I hope that you are doing ok.
Sonia
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Simvog...sorry to hear about your MIL...lifting you all in prayer.
Dr.Decker...you are in my prayers as well.
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Simvog, I'm praying for your MIL' health as well as for you to have strength.
DrDecker has responded on the Dec. Diary thread. She is ok.
Elaine, good for you for starting the diet. I've actually lost a couple lbs. just because everything tastes so bad. I do think once my taste buds come back, I'll blow up like an old cow. THEN I'll start the diet.
I just so want to taste something yummy. Hopefully after all this chemo, my knees will come back and I can do some real exercising. Even the Pilates is killing me. And it isn't doing anything to keep me in shape. I guess like you, Lisa, the drugs pack it on no matter what. Altho, I've probably never exercised like Zumba.Caroline, PM me your e-mail and I'll see what I can send you as far as a baldie.
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