debbie412

my mom is still hanging in there on hospice, but in so much pain. my dad is taking excellent care of her, but does not want to let go. she is mostly in a different world but when they move her to clean her she screams and cries. they think the cancer has spread to the bones and brain. i was able to visit her with my kids up until yesterday. now it is too hard. my 3 year old twins just stare at her and get scared. it is so hard to watch. i wish that god would just stop all of her suffering and take her to a better place. they keep changing her pain meds to get it under control, but i would rather see them put her out. i know she would feel the same way, but my dad wants her to hang on. my sister is coming from florida on saturday and i think she is trying to hang on. today i promised her that nobody is going to move her ever again and that i will take care of my dad. i had just moved into a new house when my mom first came home on hospice, and my mom wanted to see it so bad. at first hospice was against her going anywhere because she is completely numb from the breast down to her feet. my dad and i agreed that it was more important for her to reach her goals than to stop herself from doing anything and we did get her here. it was alot of work but i am so thankful that we got to spend that day all together in my house. i have so many good memories of quality time well spent and do not want to lose her, but this suffering is unbearable to watch. please say a prayer for my mom. i still pray for everybody daily.

I am so sorry to hear this news. I hate this disease. please know that if you ever want to talk i am here.

anne, i am so sorry to hear about your mom. i am going through the exact same thing right now. my mom is on hospice and went from good to terrible really quick. it is so hard watching them go through this and many times i had the exact same feelings as you. we dont want to watch them suffer. i have to say that hospice is wonderful and my mom looks forward to them. my mom was really out of it for awhile but since hospice came she is totally coherent but lost complete function of her leggs and only has use of one arm. she walked in the hospital and came out on a bed in diapers. just try to make everyday special. please email me anytime. we can vent to each other. i will pray for your mom.

my mom has been in the hospital for one week and 3 days and has gotten worse every day. first her right arm was completely numb, and now she has no feeling from her chest down. the tumor is pressing on her spinal cord and the damage is permanent. her onc told her that if she goes home she will be on hospice care. my dad thinks and wants to take care of her. her mind is really going. i dont know if it is all the meds or brain mets. before she went to the hospital we promised her that she would come home. i am so scared. i dont want her to suffer any more. i know that she would not want to be like this. this was her worst fear. i miss her so much already and she is not even gone.

last thursday my mom was admitted into the hospital because she was short of breath and loss complete function of her right arm. she had a ct scan and an mri and discovered that the same tumor on her upper right lobe has gotten much bigger and is pressing against her spinal cord. the next day her walking was wobbly and the next day she lost complete function of both legs. she cannot feel the urge to urinate and is constipated. she is so depressed. she is now getting 10 radiation treatments and 3 imrt treatments. the dr told me and my dad that these treatments may help relieve a little but not guaranteed. she has been rejecting the last 3 chemos and does not think any will take. he also said that most patients with sclc live 7-11 months and she is at 1 and 1/2 years. basically we are praying for a miracle. i feel so helpless and cannot stand watching her go down sooooo fast. i am so scared. thanx for letting me vent. it really does help to type . i go from the hospital to the computer every day. i am praying for everybody.

thanx again for all of the responses. i went over my moms today to clean and do laundry. she seemed a little better emotionally but a little worse physically. she gets so out of breath so fast. i asked the dr about anti depressants and my mom quickly denied them. she hates taking medication as it is. she is starting to say she doesnt want to be alone. my dad has to work 3 days out of 5 in order to keep his health insurance. i will go over the other 2 and make sure she eats and is taken care of. she said she does not want any outside help. she is due back for chemo on thursday, but the chemo she is on is not working. i wonder if there are any others to try. she already had 4 different ones. palves - we are very close actually. my mom lives in colonia,and i currently live in carteret, but am moving in 2 weeks to spotswood. how is your dad?

thank you for all of your replies. the dr did not recommend a brain scan because all of her symptoms are pointing toward nerve damage. it is all on her right side (where the tumor is) they thought she could have pneumonia but the xray showed it is from tumor growing. it is so hard. she keeps saying she is dying. i dont want to see her suffer anymore. she was doing so well, then when it took a turn for the worst it turned fast. i cant believe how every day is worse and worse. i am going there tomorrow to clean and fold clothes and make sure she eats. you dont realize how much you need your right arm and hand. my dad is doing his best to take care of her, but i think she needs a woman's touch!!

i am very scared and feel helpless. my mom has lost complete feeling in her right arm and hand. she was dx in july 2002. she had 8 cycles of cis platin cpt11, radiation, etoposide, adreamycin w/vincristine, and currently on topotocan. nothing has shrunk her tumor since the cisplatin. she is getting worse daily. she is coughing pretty bad, looking really pale, and crying all of the time. my dad is with her right now. i take her to all of her treatments and now she keeps saying she does not want me to see her like this. every time i want to go there she says she is tired and not to come. i have twin 3 yr olds and a 1 yr old so it is very busy. my dad said that she is saying things like "i am going to die tonight" she says she wants to go to the hospital, then changes her mind. i feel like somebody is ripping my heart out of my chest and stepping on it. i am so helpless and dont know what else to do for her. thank you for listening and i am praying for everybody.

my mom is currently on topotocan and the good news is the side effects are minimal. she had 8 rounds of cisplatin and cpt11, then etoposide, then adreamyecin and vincristine, and now topotocan. i am praying for a miracle. i will pray for your husband.

my mom is complaining of the shakes. she is on avinza, duralgesic, and cough medicine w/ codeine. she is also on topotocan. she just went to the dr because of coughing and spitting up rust colored phlem. he said it is because of the tumor and he has to treat it like an infection and prescribed antibiotics. to get information from my mom on how she is feeling is like pulling teeth. she tries to be so brave. does anybody know if the shakes could be from the combination of meds or is it a sign of mets. i am really scared.

please get the port, it will make your life so much easier. My mom tried to fight getting the port until they stuck her seven times and still did not find a vein. now she has the port and said if she ever got dx again she would get the port first. it is a quick in and out procedure. no pain whatso ever. no matter what you do eventually your veins will give out. it is also a good thing to have because in case of a real emergency it is a guaranteed and easy way to get iv in. good luck with the scans. i pray for everybody.

thank you all so much for your replies. i called the onc this morning and he prescribed a morphine pill for pain. we are do back for chemo tomorrow and i hope her bloodwork is ok. my sister lives out of state, so it is basically me and my father taking care of her. i have twin 2 and 1/2 year olds and a 1 year old son so it can be very tough at times. although, i dont really have time to get depressed!! please pray for my mom and i will do the same for everyone out there.

i have been browsing but not posting lately. my mom is not doing so hot. she originally had cis-platin and cpt 11 (8 cycles) then radiation. the tumor never went away, but shrunk significantly. after a 2 month break it started growing again and she was on 2 cycles of etoposide. it did not work. then she had 2 cycles of adreomyecin and vincristine and that did not work. now she was switched to topotican and the pain is still so bad and she basically sleeps most of the day. what next? how much can she take? i am so scared. thank you for listening, and i pray for everyone daily.

thank you for all your replies. the reason why the dr is only giving etoposide is because she just finished cis-platin and cpt-11 5 months ago. he says this is borderline time to be off and on. this is a maintenance type of treatment. he cannot give a combination chemo unless a patient has been off chemo for a certain amount of time. i am just realizing that this is just a maintenance chemo and not a real fight to try and kill the whole tumor. this is to keep her out of pain.

i am so happy to hear some GREAT news. now you can go have your beautiful baby without all the worry. I was in your shoes 8 months ago and let me tell you, grandchildren are the best medicine. your mom and yourself will have something else to focus on for change. good luck and please find time to post all the particulars! (do you know the sex of the baby?)

my mom and i met with the dr today. she has to go back on chemo. it has been 5 months since chemo and 2 months since radiation. her tumor grew from 4.2cm to 6.4cm and there is a noted possible cyst?? on her liver. she had her first treatment of etoposide today. the dr. said it should not make her nautious or be anywhere near as harsh as the cis-platin and cpt11 she had first. (she had 8 cycles) her new treatment will be 3 times a week every 3 weeks. does anyone know about this or how effective it is after already having 8 cycles of cis-platin and cpt11? thanx again.

thank you so much for responding. i dont know what i would do without this site. i am a stay at home mother of 3 under 2 1/2 yrs old. my day consists of cleaning, cooking, taking care of my kids, and coming to this site. it is an addiction! it is so nice to here positive stories for a change. to answer your question, my mom was on chemo, then radiation. radiation is not an option because she already had 5 weeks of it. i guess the radiation kept it from growing or spreading, but did not make it any smaller. i just hope that she responds to a new chemo.

well, we got the results today. my mom had a pet scan 6 weeks ago and the tumor on her lung grew from 4.2 cm to 6.5cm. it also states possible degeneration on the bone and recommends a bone scan. there are several noted "nodules" how can this grow this quick? she went from feeling great to terrible in 2 weeks. we meet w/ the dr. on tuesday and then she must go back on chemo immediately. i feel guilty because she had the choice to take a small break or continue chemo right away. (the dr. did recommend the break first) she then chose to listen to him. i should have made her continue chemo. i am so scared. is there still a chance? please help.

i just want to add that she was dx with extensive sclc with mets to adrenal. A biopsy was never done on the adrenal. her first dr used an "Educated Assumption" that this was a mets. After all of her chemo she had a PET that showed there is a mass on the adrenal but it was not cancerous. why dont they do pets right from the beginning and why dont they biopsy every lesion instead of using "educated assumptions" if i knew what i know now she might have went into remission! he gave her radiation by itself after her first pet, which was too late. again thank you for all of your help. i am going to ask about those chemo's. do you recommend any over the others for a second round?

thank you so much for all of your help. she was on cis-platin and etoposide for 8 sessions because it was still working and she tolerated it very well. after, she had a pet that showed there was still activity on the lung and a little activity in the thoracic area, but no tumor in the thoracic area. the adrenal was clear. her dr then sent her for 5 weeks of radiation since adrenal was clear. after radiation her pet still showed activity on the lung and thoracic. in june he told her to take a break for 2 months because she felt so good and he did not want to overdose her with toxins. this is where we are now. sorry i didnt elaborate earlier.

She has had 8 cycles of Cis-platin and 5 weeks of radiation.

my mom is on "a break" from chemo. She has a little swelling on her shoulder and under her arm. her dr. thinks it may be something close to a nerve or blocking a blood vessel. he is sending her for another scan and if anything it will be a maintenance chemo that will not make her feel to bad. Does anyone know of anything that would work best . i am a wreck!

of course they are so hopeful, it is their mother! If everybody listened to statistics they mine as well not even put up a fight. my mothers dr. told her that she would lose her hair . she took 8 rounds of chemo and dyed it every month and not one strand fell out. Her dr's saying is "there are lies, damn lies, and STATISTICS" i think the best thing you can do is be supportive for your husband and his family. being a nurse, you should know first hand that their are miracles and survivors with any disease.

Candy, Congratulations. Sounds like very good news to me. My mom has sclc and she too is on a break. The tumor shrunk significantly but never went away. She has been off chemo since Feb and had a scan last month. There was no change in size. This was good news because it was not growing! She is taking Celebrex. She is also taking Coral Calcium. I dont have the number on me but you can look it up online. This is supposed to kill cancer cells as well. All I know is that something is making my mom feel GREAT. She has even put on a few pounds. Eats well, sleeps well, and has more energy than me! Hope everyone can feel this good. Will be praying for everyone.

I totally know how you feel because my mom had sclc with mets to adrenal. After 6 weeks of chemo the adrenal disappeared but the right upper lobe still had a 4.2cm tumor. She did two more rounds of chemo and then had radiation. This last scan still showed 4.2 cm and a little activity (but no tumor on the chest. She too is on a 2 month break and i am scared. I just realized that the important thing is that there has not been any change and it has been 4 months since chemo. She feels great and that is all that matters. I know you have a two year old and that is the real healing medicine for grandma! I have twin 2 yr olds and a 7 month and we do things at least 4 times a week and she has more energy than me. As long as your mom feels good that is all that matters. Miracles do happen. I believe the mind is sometimes more powerful than any medicine. Please keep me updated. I will pray for her.