milnecrean Posted October 2, 2004 Share Posted October 2, 2004 Can't sleep. I start chemo on Monday ~ Phase 11 trial of weekly Docetaxel & monthly Cisplatin for non-small cell lung cancer ~ total 16 weeks. I'm so frightened after having read the side effects. Has anyone experienced these particular drugs? How long do I have to find a wig/hats before my hair falls out ? Any advice on diet ? Any advice period! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 2, 2004 Share Posted October 2, 2004 It is natural to fear the unknown and hard to not let it take control. A large majority of us have had the same treatments and the same fears. Chemo effects each person a bit different, for me I had virtually NO side effects from any of the chemo treatments and this is not all that uncommon. Try not to worry about it too much until you actually have the treatment...easy to say huh? Please let us know how you're doing. jim Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 2, 2004 Share Posted October 2, 2004 Welcome to our family and I am sorry you have to be here. As Jim said everybody reacts differently to chemo. If I remember correctly, Earl got a sheet that listed every side effect that anybody, anywhere could possibly get. Trust me he did not get many of them. A couple of important things. The nausea meds should be taken before you get sick. Drink lots and lots of water and them some more water. Chemo can be dehydrating. I hope you sail smoothly through the treatment. Keep us posted. Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted October 2, 2004 Share Posted October 2, 2004 No advice, just well wishes. And a great big welcome to this place no one wants to be. Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
Ry Posted October 2, 2004 Share Posted October 2, 2004 Things will probably be just fine so don't worry. Like Ginny said drink water. Start drinking before your chemo, drink during your chemo and after. It will help a lot. Wish you all the best. You'll do fine. Rochelle Quote Link to comment Share on other sites More sharing options...
JaneC Posted October 2, 2004 Share Posted October 2, 2004 Welcome to our group. Chemo does affect everyone a little differently. The list of side effects includes all of the side-effects that anyone has ever experienced with the drugs - so don't let that worry you too much. You will NOT experience all of those side effects. Increased fatigue is the one side effects that it seems like everyone has. I'd get groceries in and have the laundry caught up before going in to get the chemo. I agree - drink lots and lots of fluids. I was not on your particular drugs but with mine, they said my hair would come out in 2 weeks. Almost 2 weeks to the day, my hair started to come out. That's when I went ahead a shaved it. I bought a wig but hated how it felt on my head so the only times I wore it was to my son's school and sports events. I mostly wore hats. I also began seeing a counselor which helped as I was dealing with all of this. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted October 2, 2004 Share Posted October 2, 2004 Not everyone loses all of their hair on chemo. Just depends upon the particular drugs. I was told that I would probably lose my hair around the 21st day after chemo. And I did. I would invest in several soft, chenille caps. Even if you don't lose your hair, Winter is just around the corner and you can wear the caps. You've read others' advice to drink lots of water, and that's one of the best things you can do for yourself. If you can't keep up the fluid intake then ask for IV hydration. Another is to follow your doc's directions on taking the anti nausea meds when they recommend it, and how they recommend you do so, even if you don't feel sick. Because it is much easier to keep the nausea at bay than it is to control it once it sets in. One of the things I don't see mentioned too often is to have any dental work needed done prior to starting chemo (teeth cleaned, fillings, etc.) Good oral health is important while you are undergoing chemo. I was told to rinse my mouth with baking soda and water several times a day. It's supposed to help inhibit mouth sores and thrush infections. And if you can do it, try to walk or exercise every day. It helps, as long as you don't over tax yourself. There are side effects associated with chemotherapy, but there are good means of controlling and lessening those side effects. Use them and do what you have to do make it through your treatments. If one anti nausea med doesn't work then try another. If your red and white cell counts drop then ask for the injections that will help your body produce more red and white cells ( I had Neulasta and Aranesp injections). And if you catch a cold, or start to run a fever then be proactive and see your doc so the cold doesn't become pneumonia. And if your veins are giving you trouble please consider having a port put in. Mine is under the skin and I can swim, shower, etc. I've had it for over a year, and I have it flushed out and injected with heparin once a month. And if you have any questions at all just ask. Someone in this group will probably have experience with what ever you bring up. Hang in there. And we'll be hanging with you. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 2, 2004 Share Posted October 2, 2004 Gosh...first of all welcome. Like everyone said, we all handled treatments differently. It was helpful for me to mentally approach my treatment as a Halloween fun house...I never knew what was around the corner...but I was willing to walk and see...most of the time I didn't get too spooked, which in a Halloween fun house, it's a bit of a letdown...I mean, it is SUPPOSED to be scary. H2O...great advice. Eat. Even if you don't feel like it. Anything. As much of anything. Overeat...what the heck! I want to hear how you do and if you have any spooks at all in your fun house. For me, I had and have met the coolest people because of my treatment and because of my illness...I hope that you have that same experience... Come back often, and check in Cindi o'h Quote Link to comment Share on other sites More sharing options...
Margaret Posted October 2, 2004 Share Posted October 2, 2004 When we read those side effects warnings, it is a wonder any of us follows through with treatment, but we do! And, as you see, we have survived the treatments. All the advice given is excellent, especially the idea of getting a port-a-cath. I had one during my first chemo and it was great, but had to have it removed because of infection. I wish I had it now, because it makes life so much easier. My hair started coming out in clumps about 21 days into treatment...I got out of that shower and drove directly to the beauty shop and had my hair buzzed off. I had purchased a wig, but ended up only wearing it a few times to church. I found the soft turbans ideal for me...got them in lots of colors and it became my "fashion statement." I remember well my first day at the chemo room. I know that everyone will embrace you and help you through your fears just as they did me. There should be a special place in heaven for dedicated chemo nurses. I was scared to death, but it gets easier. My doctor must have ordered the right mix of pre-meds because I never had nausea problems and very little allergic reactions. Don't underestimate the fatigue factor...listen to your body and rest as you need. I'll be watching for future posts from you and praying that this treatment is effective with few side effects. Don't be afraid, you definitely are not alone. Margaret Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted October 2, 2004 Share Posted October 2, 2004 oh. did I mention Ativan? "love that Ativan!" (helps with put the spooks to bed) Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted October 2, 2004 Share Posted October 2, 2004 Sorry you have to be here. You have already gotten some good advice. One thing that I would like to add....don't borrow trouble. It is hard enough as it is. Who knows, your hair may not fall out. Mine didn't. If it does then cross that bridge when you get to it. Whatever you do ...please stay with us. We are here to share a laugh with you or to cry with you if need be. If you just want to vent...we will listen. But first, take a deep breath and quit that worrying. It will only make matters worse. Now hold that head up and . Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted October 2, 2004 Share Posted October 2, 2004 Hi welcome to the group, and I have only the advice of drink lots and lots of water. My Mom even went into the clinic a day before her chemo treatments to get hydrated intrveinus(spell?) because she didn't like to drink much liquids, and it helped her so much. . .try that. . . and otherwise, we are here for you and this is a great supposrt group. hugs Quote Link to comment Share on other sites More sharing options...
Donna G Posted October 2, 2004 Share Posted October 2, 2004 Welcome. I had Cisplatin but not the other. Most of my hair fell out ( but not all) < I did not have problems with nausea or dehydration. Some changes in blood counts, but no big problem from that. I got some nerve problems with the last treatments so skipped one Cisplatin. It is 7 + years later and I am fine so it was all worth while. Quote Link to comment Share on other sites More sharing options...
paddy Posted October 2, 2004 Share Posted October 2, 2004 My husband had Cistaplatin. Yes his hair did fall out but other than that he did not find it too bad. Paddy Quote Link to comment Share on other sites More sharing options...
PamT Posted October 2, 2004 Share Posted October 2, 2004 Welcome to a great place with great people! We are sorry you have to be here, but are glad you found this website! My husband was diagnosed 5 weeks ago, and the first three chemotherapy treatments were hard on him. My advice, just keep calling the doctor and telling him/her what is going on. We have finally found the right combination of anti-nausea and anti-diarrhea drugs and my husband feels great! It may take perseverance, but just keep asking and telling your oncologist what your symptoms are. Keep a diary so that you can tell when symptoms start, what they are and how often, and what does and doesn't work. Hang in there, and try not to be too frightened. We are all in this together and we will help you get through it. Pam Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 3, 2004 Share Posted October 3, 2004 Welcome! I KNOW how scared you are, I was there in July and get that way with every treatment. I'm one of those people that gets all the side effects. MOST people don't get any or just a few! Take your nausea meds....if you don't feel good or feel that something is wrong TELL YOUR DR.! Take someone with you to chemo! Just remember you know your body and don't be afraid to ask for help! Even if you get every/most side affects (like me) YOU CAN GET THROUGH IT! I have, just be strong and TALK! Talking sounds corny but it helps me! It's also great to have a "chemo" body, someone to correspond with about your feeling, share treatments, complain too, etc. Be tuff, I have another chemo on Monday (I'm scarred!) I'll think about you while I'm there and hope that all is going well for you! Quote Link to comment Share on other sites More sharing options...
milnecrean Posted October 3, 2004 Author Share Posted October 3, 2004 I was overwhelmed when I logged in just now by your responses, thank you ~ all of you, so much. Gosh I'm glad I found this site, I definately don't feel so much alone now. Your humour, empathy & practical advice is much appreciated, I feel so much more confident now & see the whole thing more as a challenge as opposed to the total loss of control over my life. I'm not exactly brilliant with computers & didn't really know how to reply so I hope you all see this because I'm really very grateful, thanks once again. Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted October 3, 2004 Share Posted October 3, 2004 Welcome! I agree w/ all the above posts. Good luck to you on your journey. Take care! Quote Link to comment Share on other sites More sharing options...
Kaffie Posted October 3, 2004 Share Posted October 3, 2004 Welcome, I also start chemo on Monday, I'll be taking carboplantin and Taxol. My doctor did give me booklets on each medication and everyone is right, the list of possible side effects is enough to make anyone run away. I also think most people only get a few side effects. I am going to buy a nice wig for going out and some of the scarves for around the house. Good luck on your treatment and keep posting. I'm every bit as afraid as you are but I know I have to do it so I'm trying to keep it together when I want to fall apart Kathy Quote Link to comment Share on other sites More sharing options...
Nushka Posted October 3, 2004 Share Posted October 3, 2004 Welcome. This group of people are some of the funniest, most loving and supportive folks I have ever been around. No one wants to be here but if you must, then this is the place to be. I did lose my hair after the first 3 weeks. I did as I was advised and got an inexpensive wig (had my hairdresser order it) and she styled it like I had been wearing my hair. No one could tell the difference (at least that is what they told me ) and I did wear mine every time I left the house. Mine was synthetic and fitted right and I had no problems with it. I bought, or was given, hats, scarves, caps...you name it. I only wore the soft cotton caps that I found from the American Cancer Society in their catalog (TLC). I wore something on my head all the time, except for sleeping, from May until November. By then my hair was very short but curly and very thick. Came back in the same color as it had been...only curly instead of straight. As for the rest of the advice you got...I agree with it..drink, eat, exercise and take those nausea meds as directed. Dont wait to get sick. It has been 19 months for me....and I feel great. Its worth every day of chemo. Nina Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted October 4, 2004 Share Posted October 4, 2004 Welcome to the family. I had cisplatin and vp-16 for six days on, three weeks off. I did premeds and pre hydration, plus oral zofran for nausea 3 x day, and prilosec daily. I had radiation with my chemo, and all I can remember is being tired all the time. Slept long nights... While I took the stronger antinausea meds at the drs before the chemo, I took that opportunity to eat a big healthy sandwich and lunch, You'll soon work out what you need... listen to your body. Good luck, XOXOXOXOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
Ry Posted October 4, 2004 Share Posted October 4, 2004 milnecrean & Kathy...It's Monday...hope you both made out ok. Let us know. Rochelle Quote Link to comment Share on other sites More sharing options...
SJAS Posted October 5, 2004 Share Posted October 5, 2004 Just wanted to welcome you to the family and let you know that between the new and old posts, I bet you'll have lots of good advice. Quote Link to comment Share on other sites More sharing options...
milnecrean Posted October 5, 2004 Author Share Posted October 5, 2004 Just tried to upload a picture of myself , it seems so impersonal without but I don't think it worked ~ ah well. How do I do that ? Yesterday was a long one, 11:30 to 5:30 but otherwise painless enough. I took the anti nausea pills as ordered as well as gallons of water & it worked for I had no reaction whatsoever. I went armed with a list of questions I'd gathered from your posts to me & the only advice I was able to add to your combined wisdon was 'Biotene mouth wash' as it has no alcohol unlike Listeren & the like, which can dry the mouth. Came away with more pamphlets on dealing with chemo including quite a complicated book on diet ~ this is quite a science! Thought my diet was just about perfect: grains,friuts,veg,legumes,soy to replace dairy when I discovered my cholesterol was high, together with Niacin/Phytesterols (8 Week Cholesterol Cure ~ Robert Kowalski) Now they tell me to forget cholesterol that I need lots of fat & protein. They suggested on a scale of 0-10 I'd likely experience discomfort around a 2 this week & next, but that on the 3rd week when I get both I should expect a 10. Quote Link to comment Share on other sites More sharing options...
chloesmom Posted October 5, 2004 Share Posted October 5, 2004 I had cisplatin and did not lose my hair--but that docetaxel might cause hair loss. Others have given great advice. I fell into that constipation thing once during chemo--don't do that. And yes, they told me not to worry about losing the weight I had gained during chemo and to eat a lot of food because I would need that energy to recover and keep going with it. That is important advice because if you're not getting proper nutrition, your blood counts will fall too low to administer chemo, and then you will have to drag the whole thing out unnecessarily, it won't be as effective, and on and on. Remember, the staff at the oncologist's office is there to help you get through this, do what they say, and don't be afraid to ask about things. Cindy Quote Link to comment Share on other sites More sharing options...
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