two weeks following first tx..fever and exhausted
 

This week has been eventful in the fact that it is the first time I can actually say I haven't felt well and it has definitely gotten worse with each day. First let me assure you that I have been in constant contact with my onc nurse so I am okay, however, it started Monday with headaches and continued burning in my tongue. By Tuesday, the ulcers on the tongue the nurse asked if I had on Monday and didn't, appeared. She prescribed a compound to rinse with 15 min prior to eating just so I could eat without pain. I also felt more tired then usual. By Wednesday I felt like everything had been sucked out of me and couldn't keep my head up. I had a fever of 100.3. I was instructed to call if my fever reached 100.5 but I called anyway after taking 2 tylenol. The onc nurse called back and said continue with tylenol and if fever reached 101.6 then go to emergency room. She also said that since this is exactly 2 weeks following my first chemo tx that she would expect me to feel my worst because my white count was probably at it's lowest but that it would get better each day in time to start my next tx which is next Thursday the 15th. Today I am exhausted. I can do one thing in the morning when I get up, I choose to do the health club so I feel like I am doing something healthy for my body and then I am exhausted the rest of the day. I haven't been over doing it at the club either. Anyone else experience all of this after just one tx? I also started to lose my hair, yuck, on the 12th day following tx....kind of early to me. I was told on or about the 18th day. If I comb it, it comes out in bunches so only putting a comb through in morning once when I wake up and then I just gently pull it back with a loose scrunchy. Getting it cut on Monday when I go see my wigs guys. Don't mean to complain but I really feel pretty yucky and losing my hair early like this isn't helping my mood any. Thanks for letting me vent.

Rinaina,


You can complain its a S*#&%+ time but just remember it does get better. By next treatment you will know which days will be your worst and adjust your schedule accordingly. The hair, I just shaved off it was so much easier than waking up to it all over the pillow. I too had the mouth sores and the baking soda rinse works great I hope thats what the nurse prescribed.

Hang in there.

Mary

Taxol is tough on some, not on others. I was told that the hair would last until Day 14. And that's exactly what happened. So I called my hairstylist, got a friend to come photograph the "de-hairing" (he took pictures I'll always cherish), popped a Xanax, took a swig of Champagne and gave the command to shave.

I got used to no hair really fast. Now I've been through it 3 times and since it's not growing back much this time, I'm keeping it shaved short.

Ask you doc about supplements you can take to keep up your strength. Start a supplement program, get lots of rest and smile at the money you'll be saving on shampoo, conditioner, styling gel, etc.

Love and light,

Lisa

Lisa, I am not taking taxol, I am on adriamycin and cytoxen. I will not be getting taxol at all but I will be getting herceptin and radiation following my next 3 chemo tx(treatments). Maybe you thought tx was short for taxol, sorry, that is how we use to abbreciate treatment in the dental world. Hope you are hanging in there.

Rinaina:

I am sorry that you have had a rough time, but I am sure that it will get better.

Stay strong and take care,
Jayne

Rinaina,
I, too, was absolutely miserable following my first rx with A/C. I took phenergan and ativan and got really crazy. I do not remember which med they gave me for pre treatment but it did not work. However, before the next treatment I got Emend. I never experienced any of the crap I did the first time. However I did experience tremendous fatigue, lost hair at 2 week, had to be hospitalized for 4 days after treatment 3 - NO White Cells and very low hemoglobin. Procrit for that! I ran a fever throughout chemo but it fluctuated tremendously. So I tended to ignore it since I really had no other symptoms. About the hair loss. I found that being bald did not bother me or for that matter anyone else. I was not interested in a wig and I couldn't find a hat that fit so I just "shined on". My hair came back curly and I love it! I am now almost 1 year post chemo, finished rads on 9/29. Started Herceptin 7/19. Last dose is to be July 11. MUGA actually improved inspite of Herceptin. Am currently NED and enjoying life to the fullest. Hoping and praying things go well for you through out this ordeal.
Marlys

I was given Emend and it worked like a charm. Took it right before my first treatment began and the next two mornings. I also had compazene and dexa something, a steroid that I took for the next 3 days along with ativan at night and did fine up until the 2 week mark when, according to my onc nurse, is when I would feel my worst because that is when my white count would be the lowest. Today I woke up and feel better so I hope as the day progresses I will continue to feel back to normal again, (whatever normal is), as I did up until this week. I have refills on all the above meds for each treatment so I am sure I will do fine again that first week. I have continued to take ativan at night and it really helps me get a good night's sleep. Thanks for sharing your experience. Glad to hear you are NED. Keep up the good work.

almost forgot....about the curly hair thing. i heard in most people the hair comes back curly but then if you didn't have curly hair to begin with, it relaxes after it grows more. is this true. I also heard it comes in greyer but that could be because we color our hair so we didn't know just how grey we were right?

Rinaina,
You are right. I am ER+++, PR+, HER2+++. Also I have kept my hair cut short which probably helps to keep the curl in. My beautician says she's not going to get any money for perms for a while! But the frequent cuts may make up for it. And yes it is probably greyer. I never have colored my hair and it has stayed fairly dark. I am 67 so I guess it is about time it turned grey. I
am glad you are feeling better. I must say I am a retired nurse so I was really able to lay around a bit during chemo although my husband's 92 year old mother was living with us. We did have to put her in a nursing home after 1 month because I could not longer care for her.
Hope it continues to go well for you!
Love & Hugs,
Marlys

Glad you were able to take care of yourself and lay around when needed. I too am fortunate in that way....retired dental hygienist, children are grown and on their own so I can concentrate on taking care of myself too. Stay well and glad you are doing so well. Hope to be like you in one year!

Rinaina,

Hope you are having a better day.

Having fun with my new hair too. My hair was poker straight and blonde no gray yet. It grew in thick curly and dark with yes some dreaded gray I have worn it short but have had 3 cuts and still working on a coloring I like. It has great body but yes the curl is relaxing. Just something new and fun for you to look forward too.

Mar

I am having a better day, thanks mgarr, although I feel as if I could be catching a cold which I don't need with my second treatment coming up. How we take things for granted like our hair. I am glad you are having fun now with your new growth and happy you are past all of thls. I do look forward to when I get to that point because I already miss my hair and I haven't lost it all yet. I think I am going to get rid of the rest though on Monday when I go for a fitting on my good wig. Thanks for all your encouragement, I do appreciate it.

Rinarina: My first chemo went much like yours but the second one was better because they gave me nuelasta which kept the white count from going so low. It seems they had to document the really low blood count from the first chemo to get he insurance to pay for teh nuelasta. It wasn't great after the second one but much better than the first. I wonder if the same thing is happening with you. did you have a neulast shot the day after chemo? BERTA

Rinaina,

Yes, this whole thing sucks....a couple of thoughts; neupogen or Neulasta will get the whites and neutraphiles up. I'm not a great fan of Procrite as it has been shown to interfere with the action of chemo, personally, I would think in terms of blood replacement for the reds. Small amounts of supplimental iron will improve oxygen uptake and... ritalin has been used very successfully in cases like yours; it has a stimulant, anti-dressant action and is non-addicting.
Al

Thank you Berta and Al for the info. I am amazed at how much I learn on this forum. Finding this forum has proven to be so valuable because of all the wonderful people who are there for you and for the incredible amount of information. I thank G-d everyday for getting me to this site.

RinainaHope things continue to improve for you - I tended to get cold sores, so I took a pill daily (starts with an "a" - sorry I can't remember the name...), and I never had mouth sores throughout that treatment - perhaps between that and the neupogen, etc, things shold improve for you...

good luck w/ things...

Shell

Thank you Shell for your suggestion and for caring. I haven't had cold sores yet and right now the ulcers on my tongue have subsided. The tongue still burns a bit at times but is manageable at the moment. I do feel much better the last few days thank goodness, only to look forward, haha, to my next treatment on Thursday. Will ask about the Neupogen.

I feel for you. Adriamycin and I were not friends. Or maybe it was the cytoxan.

I didn't get the awful nausea, but my white and red blood cell counts plunged, I got an infection that landed me in the hospital, and I had a lot of what they called "cognitive" side effects -- anxiety, dazed feeling, inability to sleep more than two hours a night even with a sleeping pill (ya think the dazed feeling had something to do with that?). The nurse told me not to isolate myself -- to get out. So I went to the mall, drug store, the supermarket. WRONG. The drug store is where all the sick people are, picking up prescriptions and looking for over the counter remedies. No wonder I got an infection. I hope and pray I never have to do adriamycin again, but if I do I will isolate myself from infectious sources as much as possible. I will never go into drug stores. I also started eating iron rich foods to help my red blood count -- liver that I bought at the health food store, spinach. I took Centrum with iron while I was on chemo. I got a painful rash on my hands. I used diaper rash ointment. I wish I had gotten the odorless kind, because the aroma bothered me. Hang in there and celebrate when you finish. I had a bad enough time that I only took three ACs. Had an easy time with Taxol and Herceptin. I read somewhere that people who have a rough time with AC tend to have an easier time with Taxol, and vice versa. Looking back, I'm really glad I took the ACs. I will do anything within reason to fight this disease.

After reading your post Mjo, I will not complain with what happened to me last week. As long as I know that this chemo is working I will take it because I will do what I have to in order to get rid of this b.c. I am getting my second treatment with A/C tomorrow so everyone wish me luck. After tomorrow I will be halfway done! Yeah! I am hoping I don't experience the same side effects this time 2 wks after treatment but if it isn't any worse then what I experienced then I can handle it. I am more prepared this time and I will know this time just how much rest I will need too. I will pace myself better as well. Take care and so glad that Herceptin and Taxol went well for you.