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Medical Forum / Diseases and Disorders / Cancer / January 2004Hello From Portland OR
Hello My name is Julie. I'm kind of new to this whole newsgroup thing, so I hope you'll forgive any missteps I might make. Last March my Mom, Jan (who is 57) was diagnosed stage 4 adenocarcinoma of the stomach with metastsis to the liver (2 spots). On April 23rd we began agressive chemo. Mom has a port and started on a three drug regime of 5FU, epirubicin and cisplat. This seemed to be effective for a couple of cycles, and then CT results showed some resistence in the liver. So we changed chemo. We just finished the first full cycle of taxetere and had a CT last week. Tomorrow we meet a new oncologist as her former Dr has left the clinic (we are at the Oregon Clinic Oncology Dept. in Portland). Based on a return of symptoms and a general feeling, we're betting this new regime hasn't done much. We find out tomorrow. We know our options are becoming more and more limited.. we've used the 'big' drugs. We've been searching for clinical trials and have been told that radiation, surgery and cryogenic treatments are not viable for us. My mother is only 20 years my senior.. we are very close. She moved in with me from our small hometown to the 'big city' to be nearer treatment. Other members of my family are in total denial and offer us little or no support.. this includes my father and my brother. We have been looking into Cancer Treatment Centers of America, and if we do not see some encouraging news tomorrow we will likely book a trip there for evaluation. I feel selfish for feelings I've been having while trying to deal with this and other stressors in my life. If anyone here can direct me to another group where I might be able to find some information, encouragement and support as her caregiver I would be forever grateful. Again, I apologize for not taking the time to roll through 7000+ posts here looking for answers. I appreciate any and all help/hope given. I'm 37.. I'm too young to lose my mother.. she it too young to leave this planet, but that's what we may be facing. We try to keep laughing and looking forward, but it's getting harder by the day. Thank you to anyone who read this far.. just knowing there are others out there who share our pain is a large help. ~Peace Julie AKA: Joscelin > Hello My name is Julie. I'm kind of new to this whole newsgroup thing, > so I hope you'll forgive any missteps I might make. [quoted text clipped - 44 lines] > Julie > AKA: Joscelin Julie, treatment should be aimed towards helping your mom's symptoms. There is no treatment which is curative, and none which can prolong her life. It's quality you are after, not quantity. Don't waste what time is left chasing rainbows. > Hello My name is Julie. I'm kind of new to this whole newsgroup thing, > so I hope you'll forgive any missteps I might make. [quoted text clipped - 40 lines] > Thank you to anyone who read this far.. just knowing there are others > out there who share our pain is a large help. Hi Julie and welcome, I am very sorry to hear about your mother's cancer and non-response to aggressive chemo. This is the correct newsgroup for caregivers of those with cancer. I hope you will stay around with us, so we can get to know you and your mother. We will help as best we can. I'm a "resource" person, Steph's a radiation oncologist in Canada and we have Mike in palliative care who pops in from time to time to share his wisdom and experience. There were some other "support" posters but they may be busy helping other patients off newsgroup, at this time. We have a huge FAQ on a number of subjects. If it's not there, I find it (when possible), if someone asks. I was just looking through many of the "survivor's" pages of Cancer Treatments of America. I will probably post later about that. Ask the new oncologist if everything possible has been done for your mother. Try to get a guesstimate on time she has remaining and whether it's time to look into home hospice care. In part, you would know, since your mother is living with you as to what symptoms she's having, how well she's eating and the quality of life she currently has. Do keep in touch. We'll be here for you. J > Hello My name is Julie. I'm kind of new to this whole newsgroup thing, > so I hope you'll forgive any missteps I might make. [quoted text clipped - 4 lines] > we do not see some encouraging news tomorrow we will likely book a trip > there for evaluation. Hi Julie, I expect you'll be busy and tired from today's appointment. But here's what I had ready this morning.. My partial critical look at CTCA I looked through many of the "survivor's" pages of Cancer Treatments of America. I did not look through all of them, but the ones I did were early cancers treated surgically. In addition, one was an existing employee, another has been "hired" as a volunteer. Looks like they use their "survivors" for promotion purposes. (no mention of their "losses" of course). Some of their testimonials are downright silly, saying that CTCA prays for them. Well, you could go to a local church or post here. Prayers are free here. As far as I know, CTCA charges a lot for the same as you would get at home. One was treated for worms (had diarrhea). We have access to information about complementary therapies. And if alternative therapies worked (to cure), they would be used conventionally. Some are in NCI clinical trials. These trials take time to test these altie therapies properly and prove (or disprove) their efficacy for various cancers and/or stages of various cancers. This is from their web page. "In addition to the therapies described above, CTCA enriches your treatment by offering complementary and alternative therapies such as naturopathic medicine, nutritional therapy, mind-body medicine, image enhancement and spiritual counseling. CTCA is with you every step of the way in what truly is the fight of your life. Does your mother really need "image enhancement"? We have information about nutrition for cancer patients or we can find the info for you. I have books about the mind-body connection. I'm sure your library has some also. They won't cure your mother's cancer, but it sure helps me fall asleep at night (from boredom) :-) I guess that's enough of that. It's your mother's decision. Do keep in touch . J > Does your mother really need "image enhancement"? > We have information about nutrition for cancer patients or we can [quoted text clipped - 6 lines] > Do keep in touch . > J Hello J.. thank you for taking time to look into this. Given the outcome of todays appointment out gameplan has changed and CTCA is no longer an option. As another poster mentioned to me earlier (forgive me for not remembering who.. ) "No sense chasing rainbows". Short story: The last six weeks of chemo were all but worthless. The cancer is growing again. We're going back to a three prong attack with 5FU and two other drugs starting tomorrow (I'll be back to share the other drug names when I have the discharge meds sheet in my hands). We also met a new oncologist today who confirmed what we'd been told but Mom refused to hear previously.. that we're not expecting a CURE at this point, only treatment that will give quality of life. We did not ask the HARD quesiton (how much time) because we have seen too many people take that to heart and die when their 'time' was up. I'm pissed beyond reason at the former oncologist, who has since left the clinic under a cloud (no one will tell us why he left) and HIS decision to take Mom off the 5FU and put her on Taxatere (sp) which has done JACK. I know that there are times when chemo can do more harm than good.. perhaps she was approaching that point? But the new oncologist (Dr. Curti) had no problem recommending that we go back on the 5FU and the other drugs (I know one drug starts with O and the other is a companion to the 5FU.. it's a three day process.. 2 hour drip on day one, set up a pump with 5FU, come back the next day for a push, then come back the thrid day to remove the pump). I'm kicking myself for not having been able to take time off work to be at her appointments since October (I had been out of work for almost a year and desperately needed to get a job.. so I took a seasonal job in October) my uemployment was about to run out and I HAD to have the income. Before then I was a second set of ears at every appointment, I took notes, I reminded people when things were being overlooked, I reminded Mom when I'd hear her misspeak something she'd been told by a doctor to another family member. But enough wallowing about me. Time to get back to the task at hand. KICKING SOME CANCER BUTT. Man, it feels great to share this in a place where people KNOW what I'm talking about. ~Julie > Hello J.. thank you for taking time to look into this. > Given the outcome of todays appointment out gameplan has changed and > CTCA is no longer an option. As another poster mentioned to me earlier > (forgive me for not remembering who.. ) Steph, radiation oncologist > "No sense chasing rainbows". But you are? > Short story: The last six weeks of chemo were all but worthless. The > cancer is growing again. [quoted text clipped - 8 lines] > ask the HARD quesiton (how much time) because we have seen too many > people take that to heart and die when their 'time' was up. When their time is up, it's up, no matter what anyone tells them. (on these types of cancers and when chemo resistance occurs)...is my understanding and reading others' experience. > I'm pissed beyond reason at the former oncologist, who has since left > the clinic under a cloud (no one will tell us why he left) Maybe his treatment plan was reasonable and realistic. (and did not fit with the philosophy of the others) > and HIS > decision to take Mom off the 5FU and put her on Taxatere (sp) which has > done JACK. http://www.aventis.no/nyheter/nyheter/nyheter_tax_survival_benefits.shtml At diagnosis, most stomach cancer patients have advanced disease with an expected survival of only six to nine months. Study Results and Protocol The planned interim analysis evaluated study results of 223 patients who were randomized to treatment with either Taxotere, cisplatin and 5-fluorouracil (5-FU), (111 patients), or cisplatin and 5-fluorouracil (5-FU), (112 patients). The median survival of patients receiving the Taxotere-containing regimen was 10.2 months vs. 8.5 months for patients receiving cisplatin and 5-fluorouracil alone, p=0.0064. In addition, the Taxotere combination significantly improved the time to progression (5.2 months vs. 3.7 months, p=0.0008) when compared to cisplatin and 5-fluorouracil. The response rate was also significantly higher among patients receiving the Taxotere therapy (39 percent vs. 23 percent, p = 0.012) . The two treatments were associated with comparable rates of side effects, with the Taxotere-based regimen resulting in higher rates of diarrhea and infection, while the standard treatment resulted in higher levels of nausea, vomiting, and stomatitis. The Taxotere combination also resulted in an increased incidence of low white blood cell counts. Supportive medications are available to control this problem. "Medical oncologists should treat only those patients whose symptoms are fairly well controlled. > I know that there are times when chemo can do more harm > than good.. perhaps she was approaching that point? But the new [quoted text clipped - 3 lines] > drip on day one, set up a pump with 5FU, come back the next day for a > push, then come back the thrid day to remove the pump). http://www.nci.nih.gov/cancerinfo/pdq/treatment/gastric/healthprofessional/#Sect ion_49 Standard treatment options: Palliative chemotherapy with: Fluorouracil.[4,5,12] FAM: fluorouracil + doxorubicin + mitomycin-C.[6,7] FAP: fluorouracil + doxorubicin + cisplatin.[8] ECF: epirubicin + cisplatin + fluorouracil.[9] ELF: etoposide + fluorouracil + leucovorin.[10] PELF: cisplatin + epidoxorubicin + leucovorin + fluorouracil with glutathione and filgrastim.[11] FAMTX: fluorouracil + doxorubicin + methotrexate.[3] FUP: fluorouracil + cisplatin.[3,12] Endoscopic laser therapy or endoluminal stent placement may be helpful to patients whose tumors have occluded the gastric inlet.[13] Palliative radiation therapy may alleviate bleeding, pain, and obstruction. Palliative resection should be reserved for patients with continued bleeding or obstruction. " I have a question for you. Is she well enough now to have the stent placement or is the cancer in her stomach not in an area where it will become a problem? I've seen so many "friends" go "full attack" when it was clear there'd be no quality of life and there wasn't. I don't mean NOT giving it a realistic try. It's knowing when the realistic options have been exhausted and what type of treatment is now being offered (aggressive or palliative) and what is hoped to be accomplised. Please don't go "underground". Let's talk about this, even if we disagree. J >> Hello J.. thank you for taking time to look into this. >> Given the outcome of todays appointment out gameplan has changed [quoted text clipped - 6 lines] > > But you are? Not from where I stand I'm not. > I have a question for you. > Is she well enough now to have the stent placement or is the [quoted text clipped - 5 lines] > is now being offered (aggressive or palliative) and what is hoped > to be accomplised. > Please don't go "underground". Let's talk about this, even if we > disagree. J So far as I can see I'm NOT chasing a miracle any longer.. the whole purpose of what is planned now is to improve symptoms so she can be more comfortable. The last six weeks only allowed the pain and fatigue to return..and the cancer enough time to grow to push her liver to the point where she has a noticeable bulge Dr. Curti made it clear that a cure is no longer an option and all that can be done now are things to make her more comfortble and help her enjoy what is left of her time. How am I supposed to know when to stop? All I know is that my mother is being consumed by a disease that I can't fight. Disagree..yeah. I thought I was going to get some support here not be slapped in the face for trying to fight. YOU try pushing other thoughts and opinions on family members who won't take the time to even accept that Mom is sick and I have to see it every damned day. Mom was told that stopping treatment now would give her maybe 3 months of any kind of quality of life. After just six weeks on this last treatment she's back to where she was before she was diagnosed, in pain, unable to eat more than a few bites, tired all the time. Yup, I'm being selfish, I want my mother around.. I want what time she has left to be as comfortable as possible..and for my mother that doesn't mean being confined to a bed this is how I know a more agressive contiued approach is a good thing. And she chose this road.. she asked me what I thought, but she chose it. I got accused essentially of pushing my own agenda when I spoke of CTCA, I listened.. we abandoned the idea and will remain at home. Now even pursuing the treatment recommended by her oncologist is too much. Whatever. Hi Julie, I am sorry to hear about your mom....it isn't easy to listen to the doctors when they say there isn't anything left for them to do but keep your loved one comfortable. I understand more of what you are going through because my boyfriend/common law has dealt with the same issue that your mom is at this moment. He was told by two doctors both in Canada and in the US, that there was little hope for chemo working and because of his aggressive cancer and it's resistance to chemo he should make the best of the time he has left. His last appointment with an oncologist was in August. Since then, he refused the chemo they offered because they told him it would make him very sick and probably not work in reducing his symptoms. His course was palliative care. I am currently caring for him full time. There are many different feelings that I have had, both at him, for him, at the doctors and at myself. Anger, fear, depression, sadness, loneliness, helplessness, but I have come to learn that his decision was his to make and we talked about it and we both knew that the decision would be a final decision when it came to dealing with his cancer. I love him with all my heart, and I try to show him every day, we have made some good memories and that will help me through the rough times ahead. Love is what is helping us through this, and I am sure you love your mother very much otherwise you wouldn't be this angry, or this supportive of your mother. It is perfectly fine to be angry, this is a terrible disease, and if you need to vent, go ahead, we have big shoulders, we can take it, mostly because we have all done it here too. It is not an easy job to be there for a person dealing with cancer and the very real possibility of dying and even though others in your family may not see it, you are to be commended for sticking by your mom...listen to her concerns, help her ask the tough questions of the doctors, help her weigh the pros and cons of continuing treatment. If she continues with treatment as the doctors suggest, stick with her, chemo is sometimes harder than the pain of cancer. If nothing else she will need you to get her a wet cloth or a glass of cold water. YOUR Strength will be appreciated by the person that means the most...your mom. Please remember that. No one can completely understand her situation or yours but please know that there are many of us here who have been there, done that and have a great understanding for the type of situation your dealing with. As long as your mom is able to make the tough decisions, it is just that, her decision. Your job is to help her make informed decisions. If the time comes that she chooses to stop treatment, do the same as you did when she chose treatment, listen to her concerns, help her weigh the pros and cons and support her decision. Only she knows how she feels, and she will know whether or not to continue. She may need support in that decision, and that is why you are there. Love her and make some good memories for yourself for your future. She would want you to do that. We are here if you need us. Please continue to keep us updated. Hugs for now, you are in my thoughts. Salisha > >> Hello J.. thank you for taking time to look into this. > >> Given the outcome of todays appointment out gameplan has changed [quoted text clipped - 29 lines] > cure is no longer an option and all that can be done now are things to > make her more comfortble and help her enjoy what is left of her time. That sounds sensible > How am I supposed to know when to stop? All I know is that my mother is > being consumed by a disease that I can't fight. We've all been there. > Disagree..yeah. I thought I was going to get some support here not be > slapped in the face for trying to fight. Nobody slapped you in the face. Don't let your anger at the disease spill over everyone else. > YOU try pushing other thoughts and opinions on family members who won't > take the time to even accept that Mom is sick and I have to see it > every damned day. We've all been there > Mom was told that stopping treatment now would give her maybe 3 months > of any kind of quality of life. After just six weeks on this last > treatment she's back to where she was before she was diagnosed, in > pain, unable to eat more than a few bites, tired all the time. And the chemo may help that, it may not. Your oncologist can advise. > Yup, I'm being selfish, I want my mother around.. I want what time she > has left to be as comfortable as possible..and for my mother that > doesn't mean being confined to a bed this is how I know a more > agressive contiued approach is a good thing. And she chose this road.. > she asked me what I thought, but she chose it. A more aggressive approach MAY make her feel worse, not better. > I got accused essentially of pushing my own agenda when I spoke of > CTCA, I listened.. we abandoned the idea and will remain at home. Now > even pursuing the treatment recommended by her oncologist is too much. > > Whatever. Nobody accused you of pushing your own agenda. > > "Joscelin" <joscelin@cheerful.com> wrote in > <snipped> [quoted text clipped - 24 lines] > > > A more aggressive approach MAY make her feel worse, not better. Thank you Steph. (all I knew from the original post, about symptoms/possible discomfort, was " metastsis to the liver (2 spots)" - communication problem) Maybe chemo will help (shrink) the liver bulge... J |
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