Starting Chemo April 2009
Comments
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Helen- GOOD FOR YOU!!! Sometimes medical people can be dismissive and we have to push back. I am learning this more and more. It isn't hard for me to speak up, so I have a head start in this area naturally (in fact sometimes it is hard for me to keep quiet!) but for women who have a little more trouble with confrontations, this is difficult, especially while we are more vulnerable in general due to the newness of the dx.
Reading this thread is so encouraging to me. We really ARE becoming a sisterhood (our April group) and giving support and strength to one another. I am so glad and proud to be a part of it.
I used vitamin E oil on my head when it was rash-y and sore. Rubbed it in generously before bed and slept in a cap to protect the sheets. Also now I wash my head with a skin wash that has tea tree oil in it, which I heard is helpful. The rash is almost all gone and the pain is ALL gone. Just a little itchy now. But my stubble is GROWING. I wonder if it will fall out as we go further in treatment or stick around. I have to say - objectively - it is UGLIER than being bald. I am sort of disappointed - my husband shaved his head and I thought we could at least have some fun being a matched pair for a while. But my head is really patchy and grey/black and awful. I think I WOULD rock the bald look in public, but probably not this. I had no idea that chemo hair loss was so COMPLICATED!
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I thought I'd chime in here about the head rash I, too went to a dermatologist and she said it was folliculitis. She did take some tissue to see if it as bacterial, so it came back negative. I used a topical cream that had clindymycin and benzol peroxide in it, and it helped a lot. The other thing I used was an over the counter cleanser called hibiclens, it keeps things quite clean. Anyway, I didn't even ask my oncologist, and honestly after hearing others stories, I'm glad I didn't.
Amy, I, too have some very short stubble growing in in odd places on my head. I had thought I'd have a shiny bald head, but instead I have some very minor hair growth, just enough to look like I need a shave. I won't dare shave it again, because of the folliculitis.
I had my last AC today! I am so happy to be finishing up this dosing. I'm moving on to Taxol and Herceptin in 2 weeks (if all goes well). I'm hopeful that this will be easier to tolerate, because I'm on it for 12 consecutive weeks. It's practically the entire summer.
Pam
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Helen, I'm so happy you asked for the right medicine. That is the same ingredient as the foam I have, so you should be on the road to recovery soon!
Pam, you were right in going to the dermatologist right off. And yes, I've thought about shaving down the weird growth to get to one even length, but I'm not doing anything to my head once this stuff clears up! I'll leave it alone until I'm able to put color on it, when it's a "real" head of hair.
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Ok gang....I have to say I'm getting nervous! Yesterday I had my 2nd chemo & today had the Neulasta shot. I asked about the bone pain yesterday & onc said to take just tylenol for the pain & tylenol PM at bedtime.
I'm scared cause so far I don't have any of the side effects like I did the 1st treatment. No fatigue. No pain. No metalic taste. Last time I was in bed most of the day of the shot. I guess tomorrow will be a doozer!
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Here I am again just popping in with my rare two-cents worth. Although I rarely post anything, I do log on and follow what you all are going through. I am due for my third T/C tomorrow, and am nervous becaue I feel like I have a cold coming on. Have any of you had a cold when you had your tx? I'm wondering if the onc will go ahead with it?
AmylsStrong, I also thought losing hair to chemo would just mean bald! I agree that this fuzzy head thing is much uglier....(If that is possible!) I had thought about shaving it, but I hate to do anything more drastic, so guess I will just stick with the hats and wig. I love how everyone tells you that your hair will come in much thicker, a different color,it will grow back before you know it, etc., etc.. I'm sure it's just like being pregnant. That nine months just flies right by when it is someone else!
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Hi all,
Just a quick note before I head off to bed. After having fevers for a week, the oncologist called the infectious disease specialist on Monday, and although I was back in the normal range for my counts, they both decided and with my reluctant agreement, to admit me to the hospital to find out why I had the fevers and felt generally horrible. Without a lot of detail tonight because I am so tired, I was in the hospital from Monday afternoon until this evening (Wednesday). By chest x-ray and chest CT, I have a combination of early pneumonia (bilateral), probably viral, and/or pneumonitis.Feeling better because the temp is down, but will be delaying tx #3 of A/C which was due tomorrow, until next week to be sure this is cleared up.
Will post tomorrow - have a good night, and good treatment, minimal s/e days for all.
Geri
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Hi Geri,
I am glad that you are out of the hospital. Hospitals are not a place to get a good nights rest, just when you fall asleep someone comes in to take your temperature, blood pressure or pokes you with a needle ... I'm sorry that they have to delay your treatment for a week. Get better quick.
kathy
PS What exactly is pneumonitis? I know what pneumonia is.... and my words of advice are "JUST REMEMBER TO STAY AWAY FROM SICK PEOPLE". (in my book this also means no more hospitals) I threw a man out of my office this week, because he said he thought that he had swine flu.
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Geri, I'm so sorry to hear about your hospital stay. I am glad the oncologists took this seriously, but I really wish you didn't have to go through this. I'm glad you are on the mend, but can only imagine how an infection would completely exhaust you during chemo.
I'm also sorry your AC is delayed a week. Again, it's probably for the best, but I'm so counting on all of this being over, it would be so hard to have it delayed.
I hope you can get lots of rest at home and have other people help you out.
Pam
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Hi Geri, sorry to hear about your difficulties. I hope you start to feel better quickly and get back on track to get this over with.
And regarding the fuzzy head thing....4 years ago when I had chemo, I was on CEF and every single hair came out and I had no problems. With the TC I have the fuzzy thing like many of you and I agree it is more difficult and along with the folliculitis, it is creating more of a challenge.
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I am checking in after my chemo on Tuesday & Neulasta shot on Wed. I am in utter disbelief right now. After my first treatment, I was so darn sick w/bone pain & fatigue. As of today, I have no side effects except a mild heartburn.
Has anyone had a delayed reaction like this? What is going on with me? I don't want to seem ungrateful, but how can I not be feeling the SE's? My onc told me to switch to tylenol for the bone pain & apparently it's working. Anyone else ever have a good week after chemo?
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Pam
You and I are pretty much on the same cycle. I am starting Taxol on the 2nd of June for 12 weeks - I will go every week, I am so nervous about a new set of side effects. My onco has told me several times it is going to be easier on nausea. That we will still have some fatigue but more tolerable. I have faith in him.
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Helen NC, I also had horrible bone pain after my fist treatment, but practically none the 2nd and 3rd, though the fatigue still hit me big time on the 3rd and 4th days after treatment. I also found that Tylenol worked really well for the pain I had during the first cycle.
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Jlp, thank you for responding. I am going crazy here wondering. It is a blessing for sure, but I am in complete surprise about it. I just continue to thank and praise the Lord for it.
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Stephanie,
Yes, we are on the same cycle. Did you have your last dose of AC this week too? I'm so happy to be over it, but I'm exhausted today (my dose was yesterday).
It's funny, because, like you, I am anxious about a new medication. I know what to expect with the AC, but not the Taxol. My onc. and my chemo nurse have said the same thing, most people have no nausea, but some have bone or muscle pain and then there is the fatigue. I will also have Herceptin in the mix, which seeing your HER2 status, I'm assuming you won't.
Good luck recovering from this dose of AC and I'm glad to have a cycle buddy!
Pam
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HelenNC,
My first treatment was on a Thursday morning, and other than a couple of twinges of nausea, I did great until Saturday afternoon, when nausea hit me big time. I threw up everything I ate or drank until Sunday night. Then the bone pain hit. That was terrible too. After the second treatment, I went for acupuncture, and the SE's were so minimal. (Tho I did have the chemo "fog" still...). I'm not sure if it was the acupuncture or all of the people praying for me, but I just had my third TX today, and am covering my bases with the acupuncture AND the prayer!
Linda
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I was thinking of acupunture too. I had it once before for back pain & it was wonderful.
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Can you believe it? I'm nearing the halfway mark! Chemo #3 of 6 is tomorrow/today. Time is really flying and it hasn't been that much fun! So much for THAT cliche'!
My appetite has not been even a fraction of what it was after Chemo #1...but having started the Decadron (a.k.a. Dread-A-Dron) today, I've been munching like a Baby Cub. Oatmeal (with lots of crunchy stuff in it) for breakfast, lots of yummy food from our caterer for our Asian American Program at work today, and pizza and macaroni & cheese for dinner.
Ok, who here is aware of just how WONDERFUL Stouffer's Macaroni & Cheese is? I swear God freezes that stuff in Heaven and sends it down to us! Especially at 2 in the morning in the middle of a Menopausal FoodRoid Rage! I douse it with Frank's Red Hot Sauce and all is well with my world...
I started knitting again. A common side-effect of the blend of chemo I'm on (TCH) is Peripheral Neuropathy (tingling/numbness in my fingers and toes). I have yet to experience that, so in a fit of restlessness, I picked up one of my MD Sheep & Wool Kits, the Convertible Reversable Double-Warm Hat and started knitting it. I'm almost done!
I also made 2 pairs of Swarovski crystal/pearl earrings for my Mom and friend Sandy to wear at the Inspirational Choir Concert at my church last weekend (I loved how I could see them sparkle from the audience)! The concert was WONDERFUL! So incredibly inspiring and uplifting! Truly fantastic for my soul and the souls of everyone there!
My favorite selection was from the Celebrating the Good News section ~ "Even Me"
Lord I hear of showers of blessing
Thou art scattering full and free
Showers the thirsty souls refreshing
Let some drops now fall on me!Even me Lord
Even meLet...some...drops...now fall on me!
You can hear the Howard Gospel Choir sing this on YouTube ---> Even Me
My prayer request for tomorrow is that God's "showers of blessing" be in the form of IV bags of Taxotere, Herceptin, and Carboplatin, my scrubbing bubbles, and that those blessings literally and figuratively "drop onto" and into me...Even me.
Thirsty for a blessing...
Alaina
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Alaina - you are a week ahead of me. My 3rd is next Thurs. I hope your treatment goes well. Enjoy the long weekend and rest up.
And the same for all of us. We are going to have beautiful weather here, and I intend to relax and enjoy it. I hope you all do the same wherever you are.
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Wishing all a great weekend. Lot of fun and good company.
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Just want to wish everyone a SE free Memorial Weekend. Remember the "Power of Positive Thinking", if you think you'll have a SE free weekend that chance are greater that you will have a good weekend.
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Let's hear it for beautiful weather, even here in Buffalo, NY!!!
Can anyone shed light on what SEs for Taxol will be like?
Tammy
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Hey everyone,
This is my first post here. Just had the first of 4, maybe 6, TC. Had AC about 6 years ago. Stupidly thought this was going to be a breeze! Maybe it is and I have just blocked out the memory! Great to know that the nausea meds have come a long way.
I have bilateral mastectomy back in 2003, then reconstructions in 2006 and then one radical a few weeks ago. There is a tropical island with my name on it somewhere - let's all go!
Experiencing serious pains in joints with tc - any advice? It is impossible for me to drink more fluid.
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Amy,
you and I are on the schedule. My next is also next thurs. 5/4. So far the SE have been managable. Claritin everyday must have worked, the bone pain this time was not as bad.
Everyone have a wonderful weekend.
Paula
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Amy and Paula...I have tx #3 next Thursday too so we are all on the same cycle. It will be 3 of 6 so I am almost half way there and can't believe it. I'm so ready to be done and get on with life. I'm sure everyone on this board feels the same.
Alaina...I love the Stoffer's Mac and Cheese comments. I've never tried it, but if it's that good I'm putting some in my freezer next week.
I'm heading to the beach for a few days while I'm feeling close to normal and before getting blasted on Thursday. I hope everyone has a great Memorial Day weekend and free of pain and side effects and full of safe enjoyment and lots of fun.
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I'm also scheduled for TC #3 (out of 4) next Thursday, May 28......
I got some Stouffer's Mac & Cheese today and put it in my freezer as well.
Have a good weekend, everyone. I'm sure we will be comparing notes next week.
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"Living Proof"
If you haven't seen this movie or DVD, it's well worth a look-see. It's the story of Dr Slamon's struggles and eventual success to develop and win FDA approval for Herceptin. We watched it last night, the day after T/C #2. WARNING: It's very emotiional because it's so close to home.
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Lemon, I had terrible joint pain for my 1st treatment. This time my onc suggested just tylenol. I took 3 - 500 mil. before my Neulasta shot & have had only a slight pain once.
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Checking in--I am half way. I am feeling slightly sick and I look forward to having a normal appetite (spelling?). Have a great holiday weekend ladies.
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Annabelle says "THANK YOU!!"
We found this forum just after she had her first T/C on April 30. We are now on day # 3 after T/C # 2 on this past Thursday. Your specific suggestions have helped to make the SE's much less severe with this go round, specifically:
1.) Claritin (or generic) for the Neulasta Bone Ache/Pain.
2.) A&D Ointment (also generic) for the head rash/pimples that showed up when the hair came out.
3.) Biotene Mouthwash to help rinse away the bad metallic taste.
I, too, say THANK YOU!!! to all of you for helping me, as the participant here, make her travels down this road just a little bit easier. You are all winners in my book!
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minevicp-- So sorry I didn't see your question before! I bought a big old chunk of ginger root from the grocery store, and just slice off a piece of it for tea.
I had round 3 of FEC this past Thursday, and had more nausea than before. I need to be drinking more of that ginger tea. Yesterday was a complete washout (and it was our wedding anniversary
). The itchy peach fuzz is still up there. My appetite comes and goes. My white counts stay really low most of the time. The onc has me on high-dose antibiotics because of the low white counts. This seems to have given me a yeast infection. Lovely. For some reason I am becoming depressed, thinking I still have five more treatments to go. I'm so ready to be done with this. Maybe a nice nap will change my perspective.... Chelev, have you tried B6 and a B-stress vitamin for neuropathy? That seems to work well the couple of times I have gotten it.
I also wanted to share that my ND suggested L-Glutamine powder for Neulasta side effects. I've been taking that (in a protein smoothie), along with Claritin and Advil, and have not had any problems with the Neulasta so far. For those of you who are suffering, it's worth a try.
Dutch, Annabelle has more angels? Are you planning on keeping them all?
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