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Old 12-11-2006, 03:49 PM   #1
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What happens next after stopping chemo for extensive sclc?

I am new to this board, although not to extensive stage small cell lung cancer. I've been dealing with SCLC for 10, LONG, months. I have a great network of friends, but I just need to vent and ask some questions of people who know exactly what we've been going through.

I am the 47 year old daughter, friend and caregiver of Dorothy. Dorothy, 76 years old, a long time smoker, but also one who quit 12 years ago. Unfortunately, she was diagnosed, this past February, with extensive stage small cell lung cancer in her right lobe, with mets to her lymph nodes, liver and hip. She was constantly coughing, tired, very short of breath, had lots of torso and hip pain. Thankfully, she had a great oncology team. With chemo, they could buy her more time. Without chemo, she had 2 months to live, tops. They were very compassionate, as well as honest. Her oncologist was upfront with the fact that her chemo was palliative and not curative. Just buying her as much time as possible. She began chemo in February, responded well to the Carboplatin/Etoposide treatments. Fatigued of course, lost all her beautiful hair, but not much nausea. The regular MRI's showed the cancer was shrinking. She was feeling better and better, even driving again. Going out to lunch and shopping with me! By mid June, after viewing her latest MRI, her oncologist told her the cancer had shrunk as much as it was going to and that more chemo would not make much of a difference. He told her to come back in 3 months for her MRI and check up and said to go home, forget about the cancer center for a while and try to get back to some sense of normalcy again.

We seized the moment. In July, we booked a 7-day Caribbean cruise for her, me, my husband and 14 year old daughter. We had a blast. We ate, gambled a little, (just the slots), sightseed. What a great time we had! Unfortunately, as they say, all good things must come to an end.

Her 3 month check up was scheduled for September 15. She didn't quite make it 90 days. By the end of August, the torso, hip pain were back. Plus pain in her neck and eye. With bone scan and an MRI scheduled for Sept. 8th, we were on our way back to the cancer center (which is one hour north of where we live) . The scan and MRI results confirmed our fears. The cancer was back in the usual places, plus in the neck and bones. Back to the chemo. This time it was Cisplatin and Irrenotecan. Nasty stuff. This time, Dorothy didn't have an easy time of it. Lots of nausea, lots of diarreah, dehydration, hair loss and extreme fatigue. They gave her all the pre-nausea, diarreah meds, but didn't help much. She made it through the first round of this second course of second line chemo, and started to feel a little better. By the beginning of October, she actually drove her car again. Went out to lunch with me. But half way through the second round, the second week in October , she felt so lousy and out of it, ended up in the emergency room twice. Once with dehydration, and the next for anemia. She had lost 20 pounds since September. I didn't know how she was going to make it through the last of the second round. Well, she didn't. We went in for the second round. She was so unresponsive, verbally, exhausted and ill, with very low blood pressure and temp, that her oncologist wanted to do a brain MRI that afternoon. Needless to say she didn't have chemo. I thought if she had one more chemo, that it would kill her. SHe and I discussed how badly she felt and knowing that treatment was only palliative, she decided she was done with chemo. Period. She wanted the time she had left to be quality time, not quantity and feeling horrible all the time. So, we saw the oncologist and the brain MRI. The doctor said that there was no new cancer growth in her brain, but she should scrub the chemo for that day and come back in a week, have another scan and try another chemo session. That's when she stopped him and said she had had enough chemo and just wanted to go home. Being the honest guy he was, said that was proabably for the best. That she should enjoy what time she had left feeling good for a short time, than lousy for a bit longer a time. He offered to provide any palliative medical care she would need, letting her know that they would still continue to care for her if she so chose. We thanked him, but told him we had chosen a Hospice in our town (no more driving an hour from home for treatment). We called hospice the next day. They, too, have been just great. Set everything up for her. Her pain meds, nurses visits, CNA's to come out 4 days a week to help with bathing (she still has her own apt, Im over there every other day or more. The awful effects of chemo finally wore off quite a bit. That was one month ago. Unfortunately her pain is coming back now and Hospice has upped her pain meds from oxycodone to a higher dosed oxycodone time release (oxycontin). She knows that she is going to die but is handling very well. I wish I was. She's been so upbeat and positive through this whole nightmare. I admire her so much. I don't think I would have held up half as well. She's been not just my mom, but my friend for years, she's been a great grandmother to my daughter and great mother-in-law to my husband. I go visit her and help her and get her out of the house and just be with her. We've already said anything and everything that needed or wanted to be said. We have no regrets or shoulda woulda coulda's. Now that the chemo is over and all the activity that goes along with it, I find myself getting really down. It's almost Christmas and I'm so not into it. I hate this waiting and not being able to change the outcome in any way. I have so many questions and don't know if there are even any answers to them. How long does she have, how will we know when the time is coming. I can never seem to get her nurse or social worker from hospice alone to ask these questions and don't know if they would answer them directly or not. And I feel guilty for wanting to ask. If anyone out there has been through this SCLC ordeal and can shed some light or relief, I would be so grateful.

 
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Old 12-11-2006, 05:24 PM   #2
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Re: What happens next after stopping chemo for extensive sclc?

Hi-
Thanks for sharing your feelings and concerns. I cannot help you with how long your mom might have, but Hospice gave us a little book when my FIL and dad both had cancer and it tells you what to expect and the symptoms and that type of stuff. I would ask Hospice about it so you can read about what to expect. I thank you for sharing everything your mom has gone thru since my husband has had almost the same treatment as your mom! My husband just finished his 4th line of chemo, but we also stopped it because his body is too tired. One's body can only take so much! My husband has been battling this for 18 months and was also given 2 months if he did not have treatment. I think it is wonderful you got your mom out on a cruise! We tried so hard to with Stan, but he never was quite up to that.
I pray you can be a comfort to your mom and also pray your mom won't suffer in pain. Take care of yourself and yes, undertsand it is so hard around the Holidays, but we must be thankful for today for we do not know what tomorrow holds for any of us.
Kim

 
Old 12-12-2006, 08:32 AM   #3
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Re: What happens next after stopping chemo for extensive sclc?

Ditter,

My heart goes out to you. Ive been where you are. I lost my mom to sclc Feb.18,2006. She was 60.


If you cant get any alone time with her nurse or social worker, maybe you could call and talk to them.They are also there for you, they are use to these kinds of questions and dont feel guilty about asking them.

Take care of yourself while going through this. I know its overwhelming.

Sending Prayers Your Way

 
Old 12-12-2006, 10:17 PM   #4
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Re: What happens next after stopping chemo for extensive sclc?

Hospice should be able to give you a printed paper about what to expect and look for at the end of life as there are certain signs as time gets near, thou often that is the last 24-72 hrs.

That said and done and working in a hospital for 25 yrs I know what to look for and can tell when some one will die during my shift but life sometimes throws a curve ball in there. My mom was one of those curve balls.She was NSCLC Stage IV and decided to stop chemo in Oct. before it killed her. The hospice doctor felt she would survive a few months so we all thought great we get one more christmas with her but along came that curve ball and she died unexpectdly on Nov.25th .

I never dreamed when I got her out of bed that morning that I would not be putting her back into bed that night as she showed none of the signs of someone that close to death. I think our curve ball came in the way of a pulmonary embolism ( blood clot in her lungs) that effected her ability to get enough oxygen into her blood so she died a few hours later. She had not been walking for a couple weeks but I would get her out of bed each day and sit her in the recliner in the living room but that lack of moving around sets people up for blood clots and I do believe that is what killed her. So even if the doctors or nurses tell you X amount of time you just never know.

Your mom sounds like she is at the same stage my mom was when she told the doctor no more chemo. It has been my experience that by the time most people reach that point they have accepted death and are comfortable with it, which in a way is a blessing. You like I are blessed that we were able to say everything we wanted to our mothers and as painful as it all is at least we had that opportunity as I have friends who lost their moms to sudden deaths and they then had alot of anger to deal with besides just grief. I am past any anger I first felt when my mom was told she had cancer and the only treatment was palliative as I have had since June 2004 to deal with that.So now it is just the grief and great sense of loss I feel.

I am not going to lie and say it will get easier as it won't for you but you will get through it so treasure these days with your mom.I hope you can somehow manage to enjoy her last Christmas with her as you will remember it in the future.I hope this helps you a bit as yes there is some guilt involved in wanting to know how much time a loved one has left, Just remember the reality is no one knows for sure.My prayers go out to you and your mother and may she like my mom have a peaceful transition into her spirits next life. JanMarie

 
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