Join Date: Dec 2006
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.