dani hobbs

Ginny, I am so sorry to hear about the current course of events in your lives. I do agree with Rochelle that the hospice should provide help to you whenever you need it & that you don't have to wait--that is the function of hospice. Also, by law they have to have a clinical social worker available, whose function is to help get you the services you need & be your advocate & support. Please use them so that you don't exhaust yourself. My thoughts & prayer to you & your husband.

Beth, I am so deeply sorry for your loss. I so admire the love you & your husband had & have for each other. Again, I'm so sorry.

That is so good to hear! Prayers coming your way.

I haven't posted here for awhile, although I will admit that I have "lurked"---my sister finished her chemotherapy about 7 weeks ago & I have been holding my breath regarding what will happen next. You see, when she was diagnosed last December, she & her husband were in the middle of making their long-anticipated retirement plans. They have worked hard for years, been exemplary parents & grandparents, and at the end of this June, just a couple of days ago, they had planned to begin their odyssey--close up their business, buy an RV & just go, wherever & whenever they wanted. Then the cancer happened. Well, after completing her chemo, my sister started to regain her energy & her oncologist starting assessing what was next. A full body CT scan revealed that all the tumors in her lungs, including the largest one, were no longer in evidence; there were still a couple of lesions on her liver but they were much smaller in size. Her RBC, WBC & glucose levels were back to normal. Best of all, a MRI to the head revealed no metastasis to the brain. She has her energy back & is in no pain. So, two days ago, she & her husband took off in their RV to parts unknown, with instructions from her oncologist to get a CT scan of her liver in late August, whereever she is at the time. So, if in your travels this summer, you see a happy, funny, interesting woman in an RV, it may be my sister--give her a wave & please say a prayer for her, as I will for all of you who post to & read this board.

PCI stands for prophylactic cranial irradiation. Often SCLC metastasizes to the brain & the cancer cells are too small to detect so the oncologist will recommend PCI, which is a series of radiation treatments on the brain as a possible preventative of brain metastasis. I believe it usually is offered only to people with limited stage SCLC. It often has many side effects, including memory loss and coordination problems, to name only a few. It's a difficult decision to make.

My sister had her chest/abdominal CT scan earlier this week, after her 6th round of chemo, and all tumors, with the exception of one on the liver, are gone. There are no detectable lung tumors, which is a relief to all of us, as the largest was 7 cm. & wrapped around major arteries in her right lung. The remaining liver lesion has shrunk considerably. She said her oncologist is very pleased & enthusiastic! Her platelets & RBC are still low, Dr. said this was expected. She is having a brain MRI next week, then a meeting with the oncologist to discuss results of that & what to do next. I was going to wait to post until after her MRI results were available, but just couldn't wait to share my news & possibly offer some hope & sunshine to someone out there. Have a lovely weekend, everyone!

Stress definitely can make you ill, because it lowers your immune system. I also do yoga--I have video tapes, which I bought at Target, so I can do the yoga at my own pace, with privacy. Also, I see that you live in So. Calif.--we're blessed by good weather, and I've found that a walk, doesn't matter how far or how fast, is very soothing & calming & life-affirming. Best wishes to you & yours.

My sister has episodes of blurred vision after every chemo tx. Her Dr. said this does happen, and it does clear up, and it did, every time. By the way, she just completed her 6th round of chemo and will get a CT scan next week to see if the tumors have shrunk more, gone away, etc. and will discuss with her Dr. what will happen next--radiation, more chemo, nothing...please keep her in your prayers & positive thoughts. Thank you.

My sis was dx'd in 12/03--she had a chest xray one year before & there was no evidence of tumors, yet when she was in the ER on Thanksgiving '03 for atrial fibrillation,the main tumor, in the lung was 9 cm.---that's how fast it grows. She also had several lesions on her liver. She's now on her 6th round of chemotherapy. I like the fact that her oncologist is giving her all the treatments that are feasible, is in constant communication with her, and did not give her a prognosis of a certain number of months to live---how can any human being predict something like that??? She is having side effects from the chemo such as fatigue, elevated blood sugar and low red & white bloodcell counts, but her appetite is good and she is mostly positive about her treatment and her future. As a previous writer stated, it's helpful to look at SCLC as a chronic condition that needs management---for me, that's realistic & helps prevent me from panicking & getting depressed, which won't help her. P.S., my sister is a long-time smoker, & has never been able to give it up, till now, no matter how hard she tried---but it's really pointless to expend any energy in thinking about how your mom got the SCLC. My sister was beating herself up over that at first, but then decided to focus only on getting better. Best wishes to you & your mom

Thank you all for your replies--very reassuring, & I've passed your experiences on to my sister, which was calming & reassuring to her--thank goodness for this message board!

My sister's WBC & RBC counts are low so she is taking Neulasta & Aranesp for these...but now her hemoglobin is so low that she had to stay in the hospital overnight for a blood transfusion, and may need another one. She just completed round 5 of her chemo, & I have been told that there is sometimes a "crash" right around this time in the course of treatment--is this the "crash"?? Has anyone else had to have transfusions? Mostly, we wonder, will this delay further chemo (she's supposed to have 6-8 rounds) and will she need a transfusion after every chemo treatment now???

My sister receives etoposide & carboplatin & she's also given dexamethasone (a steroid) IV with each chemo tx. because her oncologist told her that many people have allergic reactions to these chemotherapy drugs. I also know from personal experience that steroid tx. can cause shortness of breath, anxiety, increased heart rate. I hope this helps a little....there just seem to be so may things that happen to the body from the chemotherapy.

My sis was dx'd at Xmas with sclc extensive stage mets to liver. Her chemo regimen has been carboplatin/etoposide plus IV dexasmethasone, to prevent allergic reaction(?) Now her glucose levels are over 500, climbing to 600! The oncologist wanted her to get to a endocrinologist immediately, but of course he wasn't available, so since it was the weekend, her internist put her on Glucotrol XL & Avandamet--from my research, the former lowers blood sugar in a hurry, the latter is more long-term. Is this from the chemo, or the steroids or both? How harmful is it to have these readings? Will it go down? I read from Betty's postings that she also had this happen? Does anyone have any experience with this? Thanks.

I haven't been on the board for awhile, so I am catching up on posts. I'm sorry for shouting but I HATE CIGARETTES!!! I HATE THE TOBACCO COMPANIES! I HATE THAT MY SISTER IS SO SICK!!! She tried so hard to quit smoking! I would have started smoking, too, if the smoke hadn't made me sneeze so much! When we were growing up, it was considered cool! A discount cigarette store has been built right across the street from our local high school, I see kids hanging out by it and smoking, and I just want to drive my car through that store! On the other hand, I'm grateful every day that my husband was able to quit smoking 10 years ago. He also started as a teenager and I'm amazed every day that he was able to do quit. But he also says that he misses very much, even after all this time. It's a powerful, powerful addiction.

Please don't castigate yourself--just take as good care of yourself as you can. My sister tried & tried & tried to stop smoking---she was able to quit for 6 years, then started again. It's such a powerful addiction, I've never seen anything so strong, not even heroin addiction. My sister just pounds herself with guilt, but I tell her, it's done, it's happened, you can't go back, & I try to bathe her in positive feelings & love. Getting better--that's what matters now.

My big sister, who has SCLC extensive stage, has had 2 rounds of chemotherapy, & starting her third. (carboplatin & etoposide). The CT scan done after round 2 showed that the largest tumor in her lung (over 7 cm.) has shrunk to less than 3 cm. and one of the smaller lung tumors & a liver tumor are not visible at all! In fact, her oncologist said that, since she is doing so well, she may begin radiation therapy to further shrink the tumors, & I had been of the belief that radiation was not offered to those with extensive stage sclc! I feel happy & encouraged for the first time since her diagnosis, and wanted to share my hopefulness with everyone.

Mo--My prayers & thoughts are with you. Hope you have a restful, peaceful weekend. And thank you for your answer regarding my sister & PCI!

To all who replied to my post--thank you for sharing your information and positive thoughts, which I've shared with my big sister, a SCLC survivor & warrior. Your generous sharing has given us a boost.

Hello, Larissa, I know exactly how you feel. I just did my first post yesterday and already received information & support from this group. As soon as I learned my sister's diagnosis, I jumped on the Internet because I wanted to find out as much as possible in order to help her. After the first few hours, I felt like curling into a ball. Some days I just couldn't face the computer, or any more dark, negative information. But, I kept looking, & I find something new every day some things useful & some not. I have to admit, my research helped her find a very good oncologist, and kept her informed & educated about everything being done to her and helped keep her on top of her treatment, which was important as there were "gaps" that we were able to address. I'm really glad that I found this group because I can communicate with people who are actually going through this, & not just reading a lot of grim statistics. I don't live close to my sister, but I call her every day. Sometimes we talk about her treatment but mostly we just talk and laugh. When I can, I go to visit and we pig out on "forbidden" foods--who cares about watching our weight! I want her to remain POSITIVE. Da's Sis (SCLC with liver mets, dx'd 12/03)

Hi, I've been watching this board for 2 months, every since my sister was dx'd with sclc, extensive stage, mets. to liver. She is about to begin her third round of chemo (carboplatin & etoposide). So far, she is feeling good--her main side effects have been extreme fatigue, mouth sores & stomach upset. Her oncologist said that he believes she's doing well enough to have PCI soon. I've researched PCI and at first it seemed like the best thing to do but I would like to get feedback from people who have experienced it. Specifically my sister wanted to know about side effects, how people feel during and after the treatment, the average number of treatments, and most importantly, how often are the treatments---weekly, daily or what? She & her husband were just about to retire & want to travel, if she possibly can. She wonders if she wants to be tied down to a treatment that she is unsure of--especially if there are any cognitive & motor defects. She's wondering if it's worth it. I'm her main line to info. on the Internet, as it's just too overwhelming for her husband & children to research. Any information would be very much appreciated.