A place to talk death and dying issues
Comments
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Rosevalley, I am glad to hear that you are home. You do need to take it easy. I will keep you in my prayers. I hope the doxil helps, if you decide to start that tx.
Lynne
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rose. So glad you are home. Glad the peach boost is tasty. You have such strength. I doubt the mo would suggest chemo, no matter how mild, if you couldn't stand it or it wouldn't help.
I know this is nosy but have you considered marijuana? Can you ask about it tomorrow? It's supposed to help with nausea and pain. Medical kind comes in a pill.
I don't mean to open a can of worms. But I would consider it if I had to do chemo again. Of course your nausea is different because your Mets.
Will pray you get two weeks.
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Rosevalley, very glad that you are home again and even did shooting! I am certain that you will see 2016 spring. As long as your liver is all right, you can use a little mild chemo to change the cancer waves. You would never know the result if you don't try. Plus, you can stop whenever you want. Not pushing, just encouraging!
Blondie, hope you have had a better day today. Skylotus, Hortense, M360, and all who are having difficulties, wish you all comfort and peace.
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Evenin', Rose. So glad you are back home! You are in a precarious situation, for sure, and I know you will try to keep yourself grounded in reality as much as possible. However, I am going to stay hopeful that you will have the holiday you and your family wish to have followed by that very special birthday. Together we all will help you to kindle that flame.
My regret this evening is that I don't have more energy for a longer post. Perhaps I will be able to get back here tomorrow. If not, I will be thinking of you guys nonetheless. I need some rest.
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Rose, thinking of you and hoping you continue to feel OK. (I wanted to write "well" intending "well: to be relative, but, well, sigh)
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Rosevalley, I apologize for not being able to read all about your current situation. Have you perhaps been diagnosed with gastropareses?
I ask because that's what I was suddenly diagnosed with after a couple of days on morphine. Suddenly I wasn't able to keep even just two or three sips of water down, let alone food. My stomach motility had slowed down to nothing and I wasn't sure I'd still be here Christmas. After trying a couple of other meds I finally responded to Reglan. Now each day my meals and water intake is getting a little larger.
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Hi Rosevalley,
Sending warm, healing light and love for you...and a little practical advice.
While my nausea from ascites, draining and liver/peritoneal mets isn't as wrenching or retching as yours, it really threw me for a loop. Working with my hospice team and a homeopath friend, it's now under control with long-acting zofran every 12 hours, reglan twice daily with meals and the homeopathic remedy nux vomica 12x 3 times daily (this available online and in local natural food stores). I've also tried high CBD medical marijuana (helpful, but not instrumental) and plenty of ginger in different forms. *
I compare zofran to a rasp that takes off the rough edges, reglan to sandpaper that smooths and nux vomica to a polishing cloth shining me up.
Nausea is a rough ride and I hope you can continue to find peace and well-being during these challenging times.
love, Stephanie
* Crescent Dragonwagon's Ginger Sorbet
If you have someone who will make this for you, it can become addictive. And it's a clear liquid that melts in your mouth:
3 cups of water
1 ½ cups sugar
2" piece of ginger minced (no need to peel) - may want to increase, since this is medicine
¾ cup fresh squeezed lemon juice
optional: a bit of lemon zest or minced candied ginger may be added with lemon juice
1. Combine water and sugar in a medium nonreactive saucepan over high heat. Bring to a boil. Lower heat and simmer for 5 minutes. Remove from heat and add the ginger. Let cool, cover and refrigerate for 24 hours.
2. Strain the syrup, pressing down on the ginger to extract as much flavor as possible. Discard the ginger. Combine the syrup with the lemon juice, place in an ice cream maker, and freeze according to the manufacturer's directions. When sorbet is done, transfer it to a freezer container with a tight-fitting lid. Let it rest in the freeze for 3-4 hours to firm up slightly before serving.
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rose and Blondie. Praying for y'all.
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Thank you all. Forestdweller- the Ct scan showed partial blockage and increased mets to mesentery, liver and bowel. The spot on my liver is bigger and the motility issues are from the cancer being in the wall of the intestines according to the surgeon I spoke with. Chemo is the only fix in this situation. Like you, reglan is working in helping what I do consume go through. So for a Merry Christmas cocktail I was given doxil today... the red devil in liposomes. I swore in 2007 I wouldn't touch the stuff again, but this seems gentler and the dose lower then what i got back then. Although I turned bright red and got flushed when they started it, even with premeds. The lady across from me was so funny..."oooh look at your face!" It felt funny, and disappeared as fast as it started, but no pain or other issues. So they had to stop first, then slow the infusion and we didn't get out until 5pm! I was there at 10:30. What a long day. I feel ok except for a sore back.. sitting too long. My oncologist hopes this will keep me going through my bucket list of being there for the kids. Fingers crossed.
We had a nice talk with the social worker about potential things to help DD3 with my cancer. Very helpful. I will use her suggestions. I think I would have enjoyed being a social worker, sounds like interesting fulfilling work.
Has anyone spoken with Blondie? Is she getting the care she needs? Hortense, M360, Skylotus.. blessings to you all.
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Oops I didn't think that went through and hit submit again. We are having torrential rains and our signal is funky. Coming back tonight driving took 2 hours in driving rain and windy conditions. Thank goodness DH drove... There will be flooding tomorrow for sure!
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Hi you guys. Yes, SlowDeepBreathes and I have both talked to her. She talks to Slow quite a bit. Hole in One had asked about her too, and if we could do a card shower. At first, blondie wasn't sure she wanted to, but today she agreed! (She is not used to people doing nice things, for her, it's usually the other way around. If you would like her address to send a card, or her phone number to text or call her, please Pm me , and you can have it! I am sure that she would love to hear from you guys, as you understand at a more visceral level, what it means and feels like to be at this stage. Thank you also for letting me post here once in a while, it's just that I love our Blondie to bits.
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Tomboy- Thank you. I love her too! ((((HUGS)))) Blondie
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I don't post much but do follow this thread and hold you all in my heart .... Those of you who are showing us the way and especially those of you who are so caring and supportive. My last two scans have shown progression in liver and pelvic bone. I'm on a week chemo break to purge my system of navelbine and will start halaven next week. I will have a biopsy sometime afternchristmas and my tumor will be sent for genetic testing. They are hoping that I can benefit from targeted therapy. I'm just hoping the halaven slows things down. My husband has offered to be in charge of Christmas dinner this year. Yeah! tAkes a load off my mind! Praying all of you with goals make it through this Christmas season!!
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Gator Gal- we are in your pocket hoping for some relief for you. Hope your new treatment works. I noticed you have taken doxil. I got my first dose yesterday. I was kind of nauseous this morning and zofran worked. The thing I have noticed is alarming edema in my feet and ankles. I couldn't get my shoes on! They took me off the diuretics because of all the NV diarrhea but.. wow. They checked my heart and the output was ok. Maybe there are mets to the lymph nodes in my groin and that's what's causing this. Did you get any edema to your feet and ankles while taking doxil?
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Hi Rosevalley,
Wow, we are traveling this cancer road in tandem, my new friend. I asked my hospice nurse about the small amounts of edema in my calfs, shins and ankles and she blamed the ascites and peritoneal mets. Suggested that I avoid tight socks or stockings, lest I develop edema-based skin wounds. She also suggested elevating my lower legs above my heart and doing simple exercises like ankle pumps and circling my feet to keep the fluid moving.
Because of draining, I've had a problem with hand, foot, leg and belly cramps, so I have supplemented with a home brew electrolyte drink that contains Himalayan salt. No diuretics for me, but I try to take the drink in the morning, so I have time to move it off before going to sleep at night.
Thank you for your kindness to Torridon and everyone. You are extraordinary, Rosevalley and I so admire you!
love always, Stephanie
Another ascites sister here
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Rosevalley,
I had mild swelling of my feet on Doxil, but not until round three or four. It seems way too early for anything like this to be happening, unless it's some sort of weird reaction. I would let a nurse know if the swelling doesn't go down!
Sending love…
Rose.
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Longtermsurv- I too get that weird cramping after draining, but not every time. Sometimes it's enough to take a pain pill. Most of the time I just lay down and nap it off. I have been draining every day because fluid build up causes such nausea. Funny I did not drain today, don't feel the need to. But this edema started... stupid cancer filled body can't decide where it wants to store fluid..belly up or shins and feet south.
Rose- Thank you for telling me your experience with doxil. I kind of wondered what was up. I had flushing during the infusion but it stopped when it was slowed. This is just 1 day. I don't know what is causing the edema. I didn't even notice until I went to slip my shoes on to take some trash out.. and I couldn't get them on! Weird. Well we knew that right??
This is such a road.. I have written and rewritten a birthday card to my DD2 who will turn 20. I want to tell her how much she means to me and how proud I am. I finally got it where i like it on scrap paper. Read it to DH and he got all teary eyed.. me too. No doubt it'll be my last Birthday card to her. Cancer sucks.
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Rosevalley, fingers crossed - hoping that the Doxil helps you big time!
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I read this thread often. Thank you to all for your generosity in sharing your stories.
Comfort and peace in the new year
Nel
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Hi All,
Being relatively new to this site, I have found each of your stories so inspiring. I have mets to my brain and lymph nodes in my neck, and clavicle. I also have a ruptured implant which I am getting removed on Monday. I'm a little scared I won't wake up from the surgery. Although I know my cancer is back due to a tumor in my collarbone, I have to wait until January 6th to see my new oncologist. Switching care facilities has been a pain, but I really wanted and needed somewhere closer than the 2 hour commute from Philly.
I have now been off treatment for a year. I chose this because I had run out of the Her2 therapies and didn't want more chemo, that wouldn't work. My DD3 is just 14, and the second time I lost my hair was really rough on her. She suffers from anxiety and last year she ended up having to be home schooled because she was terrified of leaving me. She is so much better now but I worry what will happen when I really start to fade. My DD2 is 18 and my DD1 is 21. I have faith they will be ok. I used to pray to the point of tears that God would heal me. We lost my only sister 4 years ago and the violent nature of her death and the mess of the trial that followed was hard on all of us. My Children and my nephew who is 19 whom I had custody of, don't deserve this much pain and tragedy in their young lives.
Being in severe pain from this stupid implant and also from pain in my shoulder blade that I am hoping is residual from the implant, has really been wearing on me. The pain killers aren't working anymore, and sleep evades me until I collapse from shear exhaustion. On top of this I fell yesterday. I was taking out the garbage and rolled my left ankle and landed on my right knee and left hand. I immediately panicked that I had broken my ankle since I was home alone and wondered how I would get back inside. Thankfully I was able to stand on it. I was crying for a couple of reasons. First because it freaking hurt, and second because I lost my balance and wondered if my brain had more tumors. I rested on the couch for a while but noticed that my right leg hurt when I turned my knee. My lower back hurt and my legs were very weak when I tried to walk. I also felt dizzy the rest of the day. This morning I feel like a truck hit me. I am achier and my left arm is sore from over flexing my wrist.
I have noticed lately that words don't come as easy for me when I write or speak. This has been going on for a couple of months and it frightens me. I'm increasingly fatigued, and I have a lot of shortness of breath. Walking up stairs wears me out and I get winded walking to the bathroom. I feel like my body is shutting down. I have no appetite and sleep is the only way I can escape pain. I also have been getting more and more pains in my head that isn't like a headache, and don't go away with tylenol. I want to go through my drawers and closet and get rid of things I don't need anymore. I also want to divide my jewelry into three bags for the girls.
There are a few terms I have noticed that I ever heard of, as well as meds I don't know about. What are ascites? What is Doxil? What is Gemzar? What is gastropareses? I am ER PR - so I'm thinking these chemos may be for ER/PR positive ladies.
Thank you all so much for the obvious love and emotional support you give everyone. I feel blessed to be part of it.
Keesmom (Barb
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Hi Keesmom,
I'm sorry I mentioned ascites without saying what it is. If you have it, you'll know. When cancer congregates in some parts of the body, fluids build up. Sometimes those fluids are malignant, but sometimes they are the sign of cancer in the belly region, liver or lung linings (pleura).
Ascites is the build up of fluid in the abdomen and we get big, hard, painful pregnant-looking bellies that may need to be drained. It can also lead to shortness of breath, loss of appetite and edema or swelling in the legs (which Rosevalley said she had).
A similar thing can happen in the lung linings and is called pleural effusion.
Doxil and Gemzar are chemotherapies. Don't know what gastropareses is, sorry.
Keesmom, do you have home nursing or have you considered hospice care? It seems like you're working really hard to keep life together, including your breast cancer life. I'm sad that it's so very hard for you now and hope you find the help you deserve.
healing regards, Stephanie
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I haven't thought of hospice yet because I don't think I'm at that point yet. I can get around good, even if today it may be a bit slow. lol. I could use a house cleaner but hell who couldn't. Part of the things I want to discuss with the new dr is how do I know when its time for hospice? Thanks for the positive thoughts. ((hugs))
Barb
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GatorGal, I was wondering whether your doctor might consider putting you back on endocrine therapy since it has been a while that you've been on it. Cycling back is a viable medical approach and would also allow you to heal a bit more from chemo.
With hugs and best wishes!
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Hello Barb,
Sorry to hear of your difficulties. In terms of your questions,
Our Bestbird has written a wonderful book that she will be happy to send - it if full of well researched and valuable information:
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HI Barb Keesmom,
I'm interested in what you think about hospice for yourself. And in what your doctor says. Though it's difficult to know exactly how long someone will live, our doctors know us and the cancer territory pretty well and may be able to guesstimate our prognosis.
While I'm pro-hospice in general, I wasn't ready for its either-or choice of treatment or not in 2012 when I had a bad downturn. I did benefit from palliative care for over 4 years - it's called a both-and approach, because patients can get treatment, tests, etc. plus the social support and pain and symptom control pioneered by hospice.
I wasn't ready for hospice this past September either. Finally about 6 weeks ago, it was time.
I'd already selected the best-for-me hospice from among four in the area based on the doctors and staff, their services, reputation and what I'd experienced during deaths of friends and family members. I love my team and each day am grateful the time to be enrolled in hospice. They even show up with my prescriptions for pills and medical supplies, what a relief.
Though the doctor must estimate that we have six months or less to live if our disease goes untreated, it's possible to graduate from hospice by getting better or starting treatment again. And, if we die more slowly, we can get 3-month extensions after the original 6-month allotment.
I hear you about the help with housecleaning. Do you know of the free services for women with cancer by http://www.cleaningforareason.org/patients-2
Barb, holding you in loving, healing light, Stephanie
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Rose, I have had so many chemos I can't remember what side effect was with what. I did have edema with one of my treatments and it may have been doxil. Tomorrow i'll look at my records and see if I wrote it down. I did take lasix which took care of the problem. It does seem strange that you would have the swelling on day 1. Glad the nausea meds worked for you. Knock on wood the pre treatments have kept me from ever being nauseous in the 4 years I have been on chemo.
Bestbird, the onc I saw at Hopkins for a second opinion actually did suggest that I could try hormonals again since it had been so long since I had them. She recommended halaven first then the chemo scuttlers took after halaven but the name has left my brain for the moment. She also suggested a new biopsy and the genetic testing. She did say my oncologist had been doing everything right. He has paid attention to her report so I'm feeling pretty confident right now. I start the halaven on Wednesday.
Keeping everyone in my thoughts. Sad to see so many new people popping in, but you've found a good thread with lots of caring people!
Glenna
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Ixempra.
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Oy what a day. I was up at 4:40 wildly nauseous... total puke fest until 6. Zofran barely did anything. I ate a bit of cream soup and a rice cake yesterday.. big mistake. So I finally got that all out and called the doc. I thought for sure back to the hospital and the NG. There really isn't anything they can do with partially blocked small bowel. I am at least keeping gaterade down. Diet of champions. I am not shaky and miserable like 4AM.. tired and sore. The feet, shins edema is terrible since getting the doxil. So clearly advancing my diet past clears and full liquids.. is not an option.
DD2 came down from college for her birthday, since I wsn't well enough to make the trip to see her. The whole family all went out to eat. I stayed here and they will come back for vegan cake and coconut ice cream. I am so happy to see her. I hope she likes everything. They grow up so fast.
Trying to stay out of the hospital and home. Gatorgal- the mayo doc I saw recommended trying faslodex again but last 2 oncs said no. Now things are so bad she didn't think it would work fast enough. It seems revisiting some might make sense. Thank you for answerig my question about the edema.
Hi Blondie. Hugs to Sky, Horstense, M360 and anyone I ahve forgotten. I am definitely running on less then all my cylinders. lovingkindness to all.
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Sherrie ... Thanks! Chemo brain is real! I will have to go to another cancer center for ixempra. For some reason they don't give it at the center I've gone to for over 7 years.
Rosevalley, so sorry for your pukefest day ... Really not fair, especially on your daughter's birthday.
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