Guest Posted April 27, 2003 Share Posted April 27, 2003 Hi, I've been away all week and sure missed everyone. This board is addicting. Been trying to catch up with all the new posts and unfortunately new members too. They say cancer attracts the best kind of people and I guess that must be true. My new word for the week is "Neutropenic". After a great weekend I returned to my radiation treatment on Monday and then back to work. As usual I was fighting off the urge to fall asleep at my computer, but it seemed worse than usual. I''d get up and try to walk it off and even went outside for air a couple of times, but I was extremely tired. Then I got cold and put on another sweater, but it never occured to me that I might have a fever. I finally left a little early for my afternoon radiation and while I was sitting there waiting, one of the technicians asked me if I was ok. I guess I must have said no and the nurse took my temperature and it was 104.7. The doctor wasn't there so they sent me to my medical oncologist down the road. There is no way I should have been driving and I still don't know how I made it there. They said I had to go to the hospital and did I have anyone to take me. Well, I didn't, but I said I could walk. I was thinking I was still back at the other office by the hospital, thay's how out of it I was. They called an ambulance to take me. Geez! I guess my white blood cell count was 1 and I had gotten an infection, probably from something that was already in my body. I got to spend the week in the oncology ward being waited on and brought 3 meals a day. I got intravenous antibiotics and fluids and they wouldn't let me leave until my fever stayed down for 24 hours. The whole time they continued giving me all of my medications including the Amifostine injections and taking me to my radiation treatments twice a day. I only missed the one on Monday afternoon and they said I will need to do an extra day on the end to make it up. This low point came 11 days after my last chemo treatment. They checked me about then after my 1st round and everything was good. I wondered why they weren't going to see me after the 2nd round, do you all usually get checked between? Now they may give me nuprogen (sp?) next time. I'm scheduled to start round 3 on Tuesday and wonder if they'll be able to go ahead. I'm feeling much better now, but a bit shaken by this first bump in the road. I was sooo glad to be free again! My teenage son got to spend the week on his own for the first time, boy was this place a mess when I got back. All in all, things are still good. Thanks for listening. Jenny Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted April 27, 2003 Share Posted April 27, 2003 Forgot to sign in, that's me above. Sorry Quote Link to comment Share on other sites More sharing options...
Laurie Posted April 27, 2003 Share Posted April 27, 2003 Oh Jenny, I'm so sorry to hear of the problems that you are having. I wish I was there to drive you to the hospital. You should be checked WEEKLY!!! Especially with your stringent program. Please tell them you would like to see the oncologist weekly and get your levels checked. My Mom wasn't being seen weekly and she got into trouble.. a NURSE who saw us in the waiting room for radiation told me to get her checked weekly.. you are only in the beginning stages so you need to keep ahead of the cumulative effects of the treatments. Please take care of yourself! Get some rest and please keep us updated. Praying for your healing Jenny. Blessings to you. Laurie Quote Link to comment Share on other sites More sharing options...
SandyS Posted April 27, 2003 Share Posted April 27, 2003 Jenny - I was wondering where you were! Sorry you had to spend a week in the hospital - but those low blood counts aren't anything to mess around with. Throughout my entire treatment, I always had an appointment on Monday afternoon to have my blood checked, even if I wasn't having treatment or seeing the doctor that day. DEMAND the same from your doctor, although they're probably already gonna be a little more careful with you. I'm very concerned that you had this kind of trouble so early on in your treatments..................take care, SandyS Quote Link to comment Share on other sites More sharing options...
JudyB Posted April 27, 2003 Share Posted April 27, 2003 Jenny, It's funny but I just assumed everywhere they treated cancer w/the same guidelines. Now, I'm seeing that this is certainly NOT true. At the Arizona Cancer Center, EVERY patient scheduled for chemo, first has blood drawn and then has a CBC done. Treatment is only given when counts are OK. Only one time did my white counts go low. My daughter injected me once a day (Neupogen) for 10 continuous days. Also, I was told getting an infection could be life-threatening! I didn't go anywhere for the duration of treatments! Interesting, huh? Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted April 28, 2003 Share Posted April 28, 2003 Jenny, So glad you are ok now!!! Wow a whole week in the hospital!!! Scary!!! Glad you are doing better. Do be sure to get your counts checked weekly. My mom gets hers checked weekly. Only this last treatment was she allowed to skip a week b/c her counts have been phenomonal since the very beginning. Hang in there!! Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted May 3, 2003 Share Posted May 3, 2003 Thank you all for your support. I do have a CBC done before each treatment and had another between the 1st and 2nd treatment, but for some reason they didn't do one between the 2nd and 3rd. I'm sure they will now. I was still a little shaky last weekend after getting out of the hospital, but went back to work between radiation on Monday (it's almost easier than driving back and forth home). I started freeling nausaus and vomited and got a slight chill so left a little early for my radiaion treatment and ask them to take my temperature. It was 102, they decided to go ahead with the radiaiton and then sent me to med onc. who put me on intravenous antibiotics in the office where I got sick again. They gave me Zofran to disolve on my tongue and that took care of that. They sent me home with a perscription of antibiotics, a HUGE pill, bigger than all my others put together. My WBC was up to 7. I was supposed to start 3rd round chemo on Tuesday, but they wanted to delay until I had been without fever for a few days. We started 3rd round on Thursday and will finish on Monday. I'm feeling much better as has oddly been the case when having the chemo. Also haven't been to work in a few days. I think my nausea may be caused from the Amifostine injections I'm getting for the radiaiton. I was told it's worse than the chemo in that respect. I will also be getting an injection on the day following my chemo for the WBC. Feeling glad to be back on track. Bless you all. Jenny Quote Link to comment Share on other sites More sharing options...
lynn Posted May 4, 2003 Share Posted May 4, 2003 Jenny, Wow...you are a real trooper! You have been thru so much these past few weeks and your attitude is wonderful.Prayers tonight for you and continued successful treatment. God bless, Lynn Quote Link to comment Share on other sites More sharing options...
Guest Jonathan Posted May 7, 2003 Share Posted May 7, 2003 I hate to sound like a know it all, but it seems that your oncologist is TOO nonchalant about things! You need to be seem weekly, and have blood taken weekly to see if your low on potassium, magnesium, fluids, neutropenic, etc. Small cell is a very very bad disease, and it sounds like you are doing rather well, and have an early staged tumor, so you may want to find more concerned oncologists. You mentioned that your medical oncologist was down the road, so it seems that your two oncologists are from different facilities, and that is a nono in cancer treatment. I strongly suggest you go to a hospital where the radiation and medical oncolgists work together in solving the problems of each patients case. If possible, a hospital where they work in teams (AKA a multidisciplinary approach to cancer treatment) and run clinical trials in cancer. These hospitals are doing research in cancer and their oncologists seem to be expert in the field of cancer. These hospitals tend to be University hospitals. they have oncologists that specifically treat lung cancers, and seperate oncologists for breast cancers, whereas, in the community setting, or a small clinic, the oncologist(s) treat all cancers and are not doing research in the field. STROONGLY SUGGEST DOING THAT!!! I have a book that tells me the top cancer hospitals, state by state, in rankings...if you tell me what state your in I will look up the best ranked hospital for cancer treatment nearest to you. (te11t@aol.com) My name s Jonathan, and I am a graduating premed student going to med school nex fall to be an oncologist. Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted May 10, 2003 Share Posted May 10, 2003 Thank you all for your support! To Jonathan and everybody, First I want to thank you for your concern. I am so glad someone with your background has joined our group. We need all the support we can get around here. I live in a very small rural town with 1 stop light. I drive about 20 miles to the next town for treatment. We have 1 group of 4 medical oncologists who treat all the cancer for the surrounding counties. I feel so grateful to have them here. My doctor is the newest member, very young, and came to us from a teaching hospital in Florida. It is my hope and belief that I can obtain the latest treatments from him, but I know that I have to take charge, research, and stay on top of things to be sure that he is providing me with the best treatment available anywhere. I have already asked him about a vaccine and he agrees that is a possibility for me. Many people around here go to Atlanta for treatment (Emory). I made my decision based on my need to work, be there for my son, limited resources and energy, finances, etc. Also the fact that I was quickly directed into treatment and things moved very fast after I was first diagnosed. I have found that Dekalb Medical Center in Atlanta offers a multidsiciplinary 2nd opinion and that is my next step. I should find out in a few weeks how this first line of attack has gone. The radiation and medical oncologists do work together and practice at the same hospital. I was very impressed with the facilities here and the alternative would have been to live in Atlanta for 3 weeks. The way I'm feeling right now, weak with no energy, I would hate to face that 1 1/2 hour drive each way. Both docs think things are going very well. It is scary for me to put my life in their hands, but I do feel good about them, except for the slip up on my blood counts. I received a shot of neutrolast (sp?) after my last round of chemo and have another appointment scheduled to be checked. I am actually feeling good except for this new kind of fatigue. I just feel like a zombie, haven't been going to work and am doing absolutely nothing. I guess it's the combination of all the treatments and hope it lets up soon. Please let me know your recommendation for treatment facilities, I may go there for a 2nd opinion, but prefer to continue receiving treatment here unless I find something they can't or won't do. I also unfortunately suspect that insurance may have an effect on how often people are tested and possibly other preventative treatments they receive. That brings me to another issue. The internist that I had been seeing for routine care, physicals, etc. was not very proactive in my care. During my last physical I asked for a chest xray. She said she didn't think it was necessary unless I was having a problem and that insurance wouldn't cover it. (This with me being a 35 year smoker and using an inhaler.) Now, in hind sight, I should have insisted, even if I had to pay for it myself or come up with a complaint. We know that chest xrays don't always find this, but I feel that it very likely would have shown up then, since that's how it was eventually diagnosed thanks to an excellent doctor at an after hours care facility. This board has been such a help in keeping up with treatment and developments. All information and advise is always appreciated! Jenny Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 12, 2003 Share Posted May 12, 2003 Jenny, ask your doctor about Neulasta. It is given 24 hours after your last chemo tx. and helps PREVENT counts from dropping instead of having them drop and then getting Neuprogen. It keep my counts much more in line. Good luck! Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted May 13, 2003 Share Posted May 13, 2003 Hi hopeful2, It was neulasta that I got. I'm glad they decided on that rather than the neuprogen. I'll find out Thursday how it's going. Someone told me that one shot costs $700. I'm so thankful I have insurance and was able to get this. I see that you have finished treatments, how are you feeling these days? Does a clear scan actually mean no sign of tumors? You're where I hope to be soon. I've just finished the 3rd chemo and radiation and feel worse than ever, did it get worse for you with each treatment? Did you notice any side effects from the neulasta? Did they use it everytime from the beginning or just because you had a problem? It's hard to tell what's causing what, I guess a combination of everything. Did you have a lot of scar tissue from radiation or any other long term effects? How did the PCI go for you? Hope you don't mind all the questions, but I'd love to hear more of your story if you don't mind sharing. You are an inspiration and I'm glad you are here. Jenny Quote Link to comment Share on other sites More sharing options...
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