Katy66
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Posts posted by Katy66
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And tonights first glass will be a toast to the two of you
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I for one couldn't make it without my 2-3 glasses of wine between dinner and bedtime...I just found a t-shirt that says Group Therapy Helping People One Glass at a Time(the pic is a line of wne glasses). Probably isn't the smartest but otherwise Iwould need a script to sleep so I just use the wine for now:)
Hang in there everyone and as hard as it is...take some time for yourself. We have to take care of ourselves if we want to stay healthy and be there for the long haul!
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Michelle, I'm so with you but in my case I think I have only myself to blame. When Gene was first diagnosed I began doing everything for him and now he expects it. It isn't good for either of us! At least I do have work everyday to escape for a little while (sounds strange huh, work as an escape?) Anyway, Please take the advice you've received here and find a way to get out of the house for a little while, you'll be amazed at how it will change your perspective and probably his.
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Thanks for the info. The article on ginseng was interesting...plan to ask the oncologist.
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I've read some pretty scary stuff about it and they gave Gene a shot of it yesterday because his HGB was below 10. Has anyone had any experience with it? Are there other things I can do re food or supplement wise that would help without having to take this? They really seemed to push it saying if it were them they would do it BUT it isn't them and the more I read I have to wonder if they really would.
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For me, knowing that Gene has a scan coming up is almost harder than just continuing with treatment. I need and want to know that the tx is working but heaven forbid, what if they tell us it isn't. How will he respond? Will he give up or want to try something else? What if the MD says there is nothing else to do?
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You may be able to find a medical hospice that provides both, ours does.
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Paula,
Hospices can be very different so I do highly recommend that you do research on the options in your area. A social worker from the hospital should be able to give you information on them all and I would ask each to come and visit with you just like the one already has. I think you get a better feel for where the best fit will be.
Generally there is an admission visit where the nurse will come out and assess your Dad and make recommendations for the amount of care he will need. The consider not only your Dad's condition but also the caregiver's ability to provide the needed care and the environment i.e. lots of steps, safe bathing, etc. It could be that at that point they recommend inpatient for your Dad but if not they will tell you how many hours of care per day/week that they recommend.
Medicare pays a flat rate for hospice care so the aide, nurse, social worker, chaplain and then bereavement services are all lumped together. The transition from home care hospice to inpatient hospice is typically seamless, except for the change in the caregivers.
Good luck and my thoughts and prayers are with you and your family.
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Thanks for the research Ned. I'm working today and hadn't had a chance to do that myself.
Gene's reaction was actually on the mild side. It occurred about 10 - 15 minutes after the end of treatement. He complained of not feeling well and then I noticed his face was very flushed, particularly his ears and around his eyes. He palms were red and itchy as well as his arm where the chemo was administered. He had no difficulty breathing and his BP was normal, unlike mine after the scare
It was literally within 3-5 minutes of receiving the IV steroid that his normal color returned and he "felt better". The article confirmed what they told us about any reaction to it occuring after several treatments. It was Gene's 7th treatment of carbo/taxol combined. We are waiting to hear from the ONC re what the next step is. The RN said if nothing else we will do taxol alone next week and come up with our game plan then. She indicated there were about a handful of drugs that would be the next step now that carbo was out.
Definetly watch out for it if you are on the drug, even though Gene's reaction was mild it was scary and obviously could have been worse.
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Gene had his first chemo after a 2 week break/pneumonia recovery yesterday and ended up having an allergic reaction to the carboplatin. It was actually pretty mild and he is having a surprisingly good day today. There was a snafu with us getting him back to the right person for tx after the reaction but it got handled pretty quickly. They actually told us to wait in the lobby and I had a little "fit" with them. His chemo nurse heard me and come out to take us back but wasn't happy that the front desk told us to wait. Apparently they need some education on how bad the reactions COULD be if untreated.
Anyway, just wondering if any of you had the same thing and what chemo they went to next. Nurse told us to keep next weeks appt and we would see what the ONC says but if nothing else he would probably do the taxol alone.
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Denise, I'll keep your daughter in my prayers. I'm confident all will be well. I read this once and say it all the time, it is from some religious mystic in the middle ages... "All shall be well, and all shall be well, and all manner of things shall be well."
Katy
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Glad to hear your Mom is getting started soon with treatment and you too Patti! And I completely agree with the warning on the decadron. Gene kept me up all night while he was on it.....just wanted to talk.
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Michelle, WOW! Great work on your husband's behalf. I can't imagine the added stress of being denied healthcare you need. You keep fighting girl....we are proud of you!
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Hi Tova and Patti,
Hubby had brain mets as well but only one in the back of his brain near his optical nerve so cyberknife wasn't an opion. That is how we found out...his eyesight. They immediately stopped chemo after 3 treatments and did radiation to both lung and brain. Don't mean to scare you more than you are because everyone is different but it was TOUGH on him. He hadn't lost his hair with chemo but it all came out from the radiation. His head peeled like a bad sunburn but probably the worst was how it zapped any energy he might have had. I'm not sure if the side effects differ between locations of the brain being radiated. You would think but I'm certainly not an MD (although I think a nursing degree would be pretty easy for me at this point:) Rad stopped the end of May and so far because he is back on chemo we've not had an MRI to see how things are going. His eyesight is still doing better and he isn't having headaches so I'm taking all that as positive.... Good luck to your mother Tova and to you Patti. You have my thoughts and prayers.
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Just checking in after today's appt. Didn't see Dr. Chay, he was one of two MDs so we saw our PA, Andrea. She didn't want Gene to do chemo today since he is still recovering from the pneumonia. Said it would just be too hard on him. They had done the antibiotic for 7 days but she prefers 10 so she wrote a script for three more. He had lost 2 more lbs so she increased his merinol from 2.5 mg twice a day to 5 mg twice a day and she put him on a steroid pack in addition to the steroid inhaler. It should help with his appetite as well. She also wanted to know how his "mood" was and I told her awful so she gave us a 2 week sample of Lexapro (antidepressant).
He will start back on chemo next Tuesday for three weeks straight. During his week off they will do a CT scan before they start round three, I'm assuming to see response and decide where to go from there. I asked them about the new chemo drug that the FDA has approved for maintenance in lung cancer...I just got the alert about it on Monday. Andrea hadn't heard yet and obviously we aren't to a maintenance point but it is for individuals with any stage lung cancer who have responded to chemo. She is going to investigate it. Have any of you heard about it?
His week off is the week that we have beach reservations. Since he has already said that he probably couldn't go when it was two weeks out from the last treatment I know he won't feel like trying it now. The plan is for my sister and brother-in-law(I should just say brother:) will come up and stay with Gene. They have been here enough that they know the routine. My other sister will join me and DD on the trip. I really dread leaving him but I really think Cassie deserves a vacation before she starts back to school. It will be hard on me to leave him but I think I need a bit of break too. Is that awful??? But I keep thinking what will I do if things get worse while I'm gone??? Need some advice here:) He is adiment that we go but I'm not sure if he is just saying that.
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Welcome Maddie. None of us want to be here but it is a great place to gain the support and information we all need. I'm not familiar with BAC but wish you well with whatever treatment or non treatment you decide on.
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Thoughts and prayers for no side effects!
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Michelle,
I had started a reply back yesterday saying that I wondered if this was their way of "forcing" you into Hospice...Just wrong. I actually work for an organization that includes a hospice home care and solace center. This is not how someone needs to decide that is the level of care they need.
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Nice to meet you Greensboro Randy. I have been to that airport!
Yes Sandra, I'm learning that you leave nothing unquestioned. They were going to call in a stronger cough medicine and I had to suggest that they maybe evaluate the cough first. I have to say though the NP that saw him was wonderful, very thorough. I sometimes think you are better off seing an NP or PA vs the MD. They seem to take more time!
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Michelle,
I have no advice that hasn't already been given but I just wanted to say how sorry I am that you are going through this at a time when your focus and attention should be on your husband, not worrying about his insurance. How dare they say based on what they are reading in some book what your husband's condition is?
Someone suggested going to your congressman/woman and I would sure give that a try. I've said from the beginning that I have been lucky with Gene's insurance and hearing your story makes me realize how unbelievably lucky we are! I will keep you both in my thoughts and prayers...this has to work out for you!
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I took Gene in yesterday to have his cough checked out and I'm glad I did. He has pneumonia! WBC was at 18. They have him on an allbuterol nebulizer; steroid inhaler, and antibiotics. He has been extremely fatigued lately and I guess dealing with this on top of the chemo will do it. He has had a slight cough all along but this was different... Anyway, thanks for the response.
Randy I see you are in NC too, we are in Asheville.
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Gene has had some coughing on and off during his treatment but it has not been bad until the last couple of weeks. It has gotten progressively worse and he has now coughed so much that his side is sore. He is coughing up phlegm...sometimes discolored, brown. They have now given him some cough medicine and told him to take mussinex but I'm just wondering how some of the rest of you have handled this and does it mean we are having a set back? He is off chemo this week, a much needed break after three straight...I would hate for him to spend it coughing. I have a call into the MD now for some info on breathing treatments to help loosen the stuff up. Is this just a part of it?
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Well they ended up giving him Merinol and it seems to be working. He takes it twice a day for the first three days after chemo and then tapers off to as needed. He was better last week. Just had chemo yesterday so we will see if it continues to work. He hadn't lost anymore weight this week either so that was good. His plats were HIGH but so is his WBC.... Concensus is that he is not drinking enough water.
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Thanks, they are actually going to try a new patch with Gene. I'm waiting to get more info on it...the pharmacy had to order it. PA says that you put the patch on the day after chemo and wear for 5 days. Since his nausea seems to be daily, later in the evening this is supposed to help with the ups and downs. Can't wait to see the cost but I really don't care if it helps!
The nicest thing. . .
in CAREGIVER RESOURCE CENTER
Posted
Wow what a great boss....there are wonderful people in the world. I hope you enjoyed your weekend with Mom. I completely understand losing it and crying. My boss actually made a sign for me that said no nice words so people at work would stop being so nice about Gene's diagnosis and making me cry:)