jcawork

Dear Everybody, Thanks for the emails. I guess my inactivity was noticed. I am okay. I found myself getting very depressed from the board. A few great people died or had relapses. It makes me very upset and scared. I also posted w/ questions as I was learning. I have not had as many questions so the posts decreased/stopped. I also feel I have little to offer those that need support as I am new to all of this. I hope I can be a better support later. Here is my update: 1 round of Cis and VP16- Severe hearing loss switched to Carbo Round 2 completed New CT and PET Scans mid cycle: Chest tumor & node are almost gone. Node in pelvis still there <1 cm, unsure if its met or inflam. condition due to cytic ovarian disease. Too small to biopsy. Round 3 completed I am in my final week or so of radiation-just sick of it, but okay. Have had some esophogus, some chest pain, moderate skin burns I have had no vomiting from chemo. I have been tired and spacey. I have severe bone pain to Neulasta (3 week dose) so I am doing Neupogen shots periodically at home for my WBC. This week it has hit an all time low. This makes me pretty nervous. The Neupogen also makes me feel like crap too, but I guess it's a have to. Is there anything we can do to increase WBC and RBC's on our own that work ie, excercise, vitamins etc...My Doc say's no there isn't. Just thought I would ask the real experts, you guys. Hoping all of you are well. Thanks again for the contact and for noticing I had been missing. Didn't mean to cause alarm by the break. Jen

Hi, I am only doing once a day I have heard twice a day is tough! I am in my 4th week, so far so good. I have not taken the shot. I am dreading the throat thing. How are you? I am hanging in there. 2 chemo's down start again next week. Jen

Thanks

On all 3 of my PETS, a small pelvic node has been hot. This PET this week was after chemo and now it is smaller and less hot and one thought is it has responded to chemo (not what I want to hear as that would mean its a met). The other school of thought it it is some unrelated inflamation. I also have poly cyctic ovarian disease which showed up as usual on the CT scan. Oncologist thinks it may be a met, Radiology oncologist thinks its nothing and says you can have an ingrown toe nail mild infection and have a node light up on the same side that is not cancer. Bad place to biopsy so may not get confirmation. Anyone else have a pelvic node light up. Results? Thanks, Jen

My Oncologist started by telling me 4 rounds and now has changed his mind to 6 rounds. My first round was Cis and VP 16 ( 4 expected rounds) then I got changed to Carbo and VP 16 starting round 2 dur to an ear reaction (and now 6 rounds to be done) as he considers carbo less toxic and less effective (Cis is still the first line of defense for sclc he claims). How may rounds and what drugs as I am curious? Thanks, Jen

Investigating where people had there radiation shot (mine is cleavage area and to the right about 3 inches 6"X 6" irregular circle/ front and back being shot) as I hear it makes a difference on side effects. Checking to see what side effects people had and when they got them in their treatment cycle. Thanks Jen

Anyine in Maryland or DelMaVA interested in a get together please email me at: jcawork@aol.com Looking for Maryland people to meet. Thanks Jen

Did anyone get this daily shot during Radiation? Did it help eliminate esophogiolitis? If you didn't get this shot, did you have esophogus problems and if so when did they start and finish and how bad were they. Thanks Jen

Cindy asked me to post for her that her computer is out, she has a new one on the way. She is 2 years out and got all of her new scan results. ALL CLEAR! Her heart issue of fluid is still being debated but she says this is better too. Thanks

My counts have dropped a lot and they want to give me daiky Neupogen shots. Anyone w/ any experience w/ this? Any reaction? Anyone get anm infection from low counts? Thanks, Jen

Being changed to Carbo because I did suffer from a severe loss of hearing from my first dose of Cis. I was so worried about everything else (allergic reactions) , I never thought about the ears. They said first time out was rare, but it happens. I have seen and ENT and had formal hearing tests. I have significant loss both ears. They do not expect it to return, but said the buzzing (titinitus) should get better. Has anyone been changed to Carbo? Did Carbo cause any ear stuff for anyone? Is Carbo infused the same as Cis w/ all the fluids and diuretics? Thanks, Jen

Has anyone had any "hot spots" light up on thier PET that was later determined to not be cancer? I had my spine light up the first time, they then later decided via CT it was arthritis that can be metabolically active. I also have one node in my pelvis that lit up, but they don't think its anything. Its a tough spot to biopsy. They also said it would be a weird place for a met, a line node in my pelvis and nowhere else. They told me "cold" is usually accurate, but "hot" can sometimes be something else. Thoughts? Thanks, Jen

Glad you are back as you have been missed. Cindie, thanks again for all of your time, effort and encouraging, but honest words. You have been such an inspiration. Jen

Anyone had these a few days post chemo (cis and vp16). They itch a bit, look like pimples, neck, breasts, back and sides. No limbs or face yet. Thanks, Jen

Has anyone had any ringing or muffled hearing after getting Cisplatin? Thanks, Jen

Yesterday was a bit of a blur. Couldn't stop sleeping and felt "odd" and "weird" all day after chemo 3. Today I have a cough w/ lots of phlem, not sure why. Called and they said not to worry about it. My ears are also ringing and buzzing. I go from okay to very tired and feeling strange and spaced out. Its very weird. All of a sudden I feel heavy and like I weigh a ton. No vomiting through 4 days! I wish you could find more info about the first week. You read all this stuff about later, low blood counts, shots, infections, but there isn't much written on the first week-how it feels, what's normal etc.... Thanks for all of the support. I couldn't have gotten started w/o you guys. Hopefully, all of this will be worth it and work! Jen

Looking for feedback on this shot. Thanks

So far so good. Yesterday was 4 hours long and I was very nervous. saline for a bit, Aloxi, Decadron, Lassix and mannitol. VP 16 for 45 minutes Cisplating for 2 hours Headache and bodyaches all night Today vp16 only 2 hours ( I had them reduce the decadron from 10 mg to 4 as its too tough on me-up all night) headache and sleepy so far. Dont feel myself, but NO VOMITING so far in 28 hours!!!!!!!! A little buzzing in my ears. Taking Zofran and ativan every 8 hours at home Day three tommarow. Thank-you for all of your feedback on all my other posts and for saying my pic was nice. You have all been kind and my true support. Jen

Anyone had the same?

She will be back up soon.

I start tommarow. Will I feel it going in to me? Will I feel sick while I am there or when I get home? Cis and VP 16. Is it tough getting it together on day 2 and 3 to get the VP 16 again? Never been so freaked out about getting treated for something. HELP! Jen

How did this get diognosed? Why no chemo? Jen

Had a PET today. Thing in liver is a thing but they claim not cancer/met. No other new spots, lung tumors have grown. Back to original plan, chemo starts Tuesday-Cis and VP 16, MRI cancelled, no liver biopsy. Here we go! Thanks for all of the prayers and thoughts. Jen

Mine are quite elevated any ideas? have you had this? Thanks, Jen

Thanks for the feedback. Here is my story. 12/03-5/04 I complained of cough and feeling bad all xrays clear until 5/11/04 (they missed the mass on the 3/04 xray) then I had to have 2 biopsies because the first one was inclonclusive-this of course took a bit of time to get these scheduled and get results pet, MRI's, ct scans etc........more time then I took a week off thinking I would go to Fla to see my family, as my Doc would be out of town same week and I didnt want to start w/ him out of town I also did 3 second opinions including Georgetown this took a week. I then asked for a repeat CT for baseline (head, chest and abdom) since it had been a month and BOOM! 2 cm mass on my liver. I did not have an abdominal CT because the PET was clear in this area just a month before. My Onc. says if its a met I will get cis and cpt11 if its still limited I will get cis avp16 and he needs to know before we start tried to get in sooner for the biopsy, but couldnt called 4 hosiptals. Yes, I am nervous about the wait. I am nervous about everything. I almost cant live w/ the thought this if its extensive. Everything you read is so horrible. Do I have only months? _________________ Jen, looking for hope and the strength to fight 6/04 dx w/ limited sclc one 4cm tumor right lung w/ hilar node involvement. Planning cisplatin and VP 16 w/ rad to chest 42, 5 kids, great husband and friends jcawork@aol.com