hollyanne
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Posts posted by hollyanne
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Hi -
My mom's mobility is still significantly limited due to severe neck pain. She has had the neck radiated, so they are not apt to radiate again - unless we find it is a different vertebrae causing the problem.
Do any of you have experience with epidurals or nerve blocks for cancer pain? I think the more "permanent" ones are supposed to help for 3-4 months. I feel like if we could get some relief from the neck pain, that she would be able to better rehab some of the other areas which are not causing much pain anymore.
Thanks as always,
Holly
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I do agree that when a lot of people ask the question "did she smoke" they are looking for a way to calm their own fears that they may be at risk. I have so many friends my age (late 30's) who may have smoked for 5,6,7 years and have stopped....as a result they somehow want to hear that they are "safe."...I think they WANT my mom to have been a heavy smoker....afterall if she smoked longer than they did...it somehow makes sense to them
NO ONE deserves this disease, smokers or non-smokers.
XOXOXOX,
Holly
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Lori -
I just want to offer my support. I completely understand the pressures and tension of trying to offer 24/7 care for someone who is pretty immobile... we are dealing with the same situation. I have basically moved from San Francisco (and my husband) to Utah to try and help my parents through this journey. I have a baby coming in six weeks...and have no idea where I will deliver! One day at a time. Yet, I don't think you or I will EVER regret the sacrifices we are making, and yes I am scared too.
It sounds like you have options which is wonderful, I pray that one works for your mom...and as importantly you will be in my thoughts that you receive some peace and moments of clarity...and some relief from care-taking. You are doing the right thing.
Holly
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LuLu -
Please feel free to personal message me - First, you have a found a fantastic place to be...the people on this board are all so supportive, and have lots of love and advice to give.
My mom was also diagnosed with stage IV with mets to the spine (about three months ago.) She has since developed mets to the ribs, neck, hip and femurs. There are many things that can be done to lessen the pain -- many, many things from radiation to pain control pumps and patches. You are just beginning this journey. I was terrified when this started (and I am still am lot of the time!) -- but you WILL get through it. I agree with everyone else -- FORGET THE STATS and FORGET the PROGNOSIS.
The absolute best advice -- although it sounds so trite is: take each day as it comes, do not try and figure out the future as that is when you will get overwhelmed. You may not have the strength to deal with tomorrow right now...but you WILL when tomorrow comes.
Please know that everyone on this board is here for you.
Holly
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Hi -
We looked into a pump as well...we were encouraged to try to the patches first...yet their are SO many pain options. The best advice I received for my mom is to make it very clear where you/she wants her pain level to be. There are trade-offs between pain relief and sleepiness/mental awareness, etc. We have a found a pretty good mix (after trying many things) which gives my mom relief but she stays awake a lot of the day and has little confusion.
For us the mets in her bones have been the worst thing this disease has given us so far....seeing someone you love in pain is absolutley terrible.
Hang in there...and talk with a pain specialist....I have found the steroids only help in conjunction with a strong narcotic...but for my mom, they really do help.
Best,
Holly
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I have to agree with everyone - get her checked out ASAP. If she didn't break something...I can give you an idea of what we have done for pain. My mom has mets in the neck, ribs, hip, and femurs -- she has had her neck/hip and back radiated.
Ironically, the pain has been her only symptom of the lung cancer, and has been excruciating. I understand the sickness you feel when you see her suffer so.
My mom is using Duragesic patches (fetanyl) - which have been pretty good as they are easy to regulate the dosage, and they last for about 72 hours at a time. We started at 100...and have levelled off at 200. She uses Actio Fentanyl suckers for breakthrough pain...which work in about 10 minutes for her. Additionally, we had decreased her steroids...which was a HUGE mistake. Now that she is back to 12mg a day, the pain seems to be a bit more under control...and she is "mom" about 85% of the time...not too drugged.
Please let us know what the doctor says...and please feel to message me anytime as I unfortunately have learned alot about all the pain meds available.
Good luck. I'll be thinking about you and your family.
Holly
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Libby -
Hang in there. My mom is doing th radiation and chemo at the same time as well...in addition to being in excruciating pain. She has only been through one round of chemo so far (Gemzar/Carbo) and we just finished the radiation. I'll let you know how the next round goes.
I'll be thinking about you. I know how much it sucks.
Holly
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Ben -
It is hard to respond after Cindi's beautiful response, but I am going to try...and this come from my heart.
I 100% believe that you should encourage your mom to stop thinking about or trying to rationalize about if there is or isn't an afterlife, but instead to ask God to give her the comfort, peace and confidence that death is not final. If she asks that the fear be taken away, it will be. If she is skeptical about praying, look at it this way -- it can't hurt anything to ask God with an open-heart for help, clarity and peace. He doesn't care when we ask for help, just that we ask for it. She may not recieve calm immediately, as we all need patience -- but she will.
I come from a family with a mom who has the strongest faith of anyone I know and a dad who has little to none. It has created an interesting dynamic for all of us as we go down this path.
I, like Cindi encourage you to spring a spiritual leader (priest, pastor, rabbi, etc) into your home --it will help all of you. I can't express the comfort that is received.
Your family will be in my prayers tonight. Please keep us posted.
Holly
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Thanks to all of you who have shown me so much support over the last few weeks. I consider myself to be strong...but I really doubted my ability to make it through the last little while.....
My mom had been in excruciating pain and completely immobile. We suffered through getting her in the car to get to the center for chemo last Tuesday (definitely considered not going.) It was terrible. Yet, I have to say that God works in mysterious ways. I broke down that night and called a friend of my mom's who was a hospice nurse. I say "was" as "something" drove her to quit that very morning....and she says she now knows why.
We have now hired her to help my dad and me out a few hours a day. She immediately got a physical therapist up to the house to help with strengthening some muscles (now that radiation is over) -- and we found that an increased dosage of steroids is the trick for mom. She is doing much better today painwise.
On another note....the due date for my baby has been moved up to December 12...and she is doing great in my belly.
With Love,
Holly
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Pam -
Thanks for the info. I talked to the onc this morning -- and he thinks it is the ativan along with the Duragesic patches which are causing the confusion -- I yanked off the patches for now..and she seems to be doing better. My dad also made the mistake of putting one where she uses a heating pad -- stupid, yes I know.
Anyway, thanks for the help - I really do appreciate it and will keep you posted.
Holly
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Anyone had or seen confusion/disorientation as a side effect of Ativan? I gave my mom one today for the first time...and out of the blue she is disoriented and zonked out.... I used to take them from panic attacks.....but didn't have this effect.
Thanks for any input/advice. I looked online and saw that it can be a side effect...but I would feel better hearing it from someone with experience.
Holly
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Jim -
Just want you to know I will be thinking about you. My mom just finished radiation on the neck...and her throat is raw/raw. I found that high calorie Ensure (strawberries and cream) blended with raspberry sherbet, milk, fresh berries/banana -- stick with blueberries or smooth fruit -- gave her a bunch of calories and some relief.
Just reading some of your posts has been such a strength to me...go get em!
Holly
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All -
Thank you so much. I was having a tough time yesterday and your words of encoragement and prayers mean the world to me. I just hope that I am able to support each of you in the same compassionate manner you have supported me.
Lovet to all,
Holly
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How do all of you stay so strong?? I have some very good days, and then absolute breakdowns....and being almost 8 months pregnant and hormonal doesn't help.
I feel like my Mom and family just can't get a break. this disease has spread through her bones so quickly, yet the lung has remained fairly quiet.
We got the results of another bone scan last week which showed progression in the ribs, hips, femurs. She has little to no mobility at all, and that is the most difficult part...... My baby is due in December and the oncologist told me that there is a chance she will not see December. Yet, I have to think that means there is a chance too -- right?
If she could just get some mobility back, it would be a different story from a quality of life perspective. Have any of you or your loved ones lost significant mobility and then gotten it back after radiation, etc. We did a mega radiation blast yesterday and also started Zometa.
I want to thank all of you for your support, and please know that I keep you and your families in my prayers every night. Love to all, Holly
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Hi -
My mom has had a terrible time with pain and has been unable to get started on chemo...yet they recently put her on steroids, and she is doing better, thankfully. Given that she has new pain in her hip which is terrible..they are going to do a full bone scan tomorrow. If it is a met tumor, they will radiate that as well.
My question is this...what is the differnce between a CT scan, bone scan and MRI -- what shows what. For example, if there were mets to the brain or skull, would those show up in a "bone scan?" If something is in the adrenal gland near the kidney -- would that show up in a bone scan or a CT scan or what.
Please help!!! I feel so ignorant.
Thanks very much!
Holly
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Libby -
I am so happy for you and your family! My mom was diagnosed not long after yours...so I know that sense of wanting so desperately to have a "good" phone call with her or my dad.
I'll be thinking about you.
Holly
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Fay -
You are in my thoughts and prayers -- it is people like you that give me so much encouragement and hope as we move forward with my mom.
Stay tough! God Bless.
Holly
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Hi -
Many of you have responded to questions I have posed already. I can't thank you enough. My mom is a 71 year old non-smoker who is the most health conscious person I know - the diagnosis was a horrendous shock as she was having back pain....never though it would be cancer, much less lung cancer.
To make matters very bitter sweet, I am having her first grandchild in December....she has been waiting a lot of years (I am 38!)....my mom is truly my best friend in the world.
I so desperately want to make things better for both her and my dad -- a feeling I am sure that all caregivers/family members can relate to. The absolute best advice (besides counting on God to get us all through this) that I have gotten is truly one day at a time...the prospects of looking far ahead seem just too overwhleming. I pray that I will have the strength to deal with whatever, whenever I face it...versus trying to predict the future now.
Thank you so much for the support.
With love,
Holly
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Hi -
My mom is about to start radiation on the neck and hip areas...she is in extreme pain. Originally she was taking percocet (a lot of it) which isn't working. The doctor has now put her on Dilaudid...can you tell me your experience with this medication, maximum dosage -- and thoughts about other pain meds to get her through this?
Thanks,
Holly
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Thank you so much for all your responses... knowledge certainly makes me feel more in control of something I feel is spinning out of control. I am sure you all can relate. Thanks again.
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Hard to believe I have a full-time job... another question from me!
Can you please let me know your expereinec with the Genzar/carbo combination (side effects, quality of every day during treatment, etc.) My mom is doing a Mon/Mon/off/Mon/Mon/off/Mon/Mon/off treatment starting after radiation.
Thanks again,
Holly
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Can you tell me where you or your loved ones most often see mets with NSCLC - I know the bones for sure and adrenal areas (liver/kidney?) and brain -- what about stomach? Just trying to arm myself with info. I so appreciate everyone's feedback and well wishes.
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Finding this place is a God send. I thank you so much for your messages. It means so much to me as I travel down this road of complete unknown. I'll be in touch.
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Hello. My mom was recently diagnosed with stage IV NSCL with spots in the left lung mets to lower spine and as of today neck vertebraes. She had 12 sessions of radiation on the lower back which went very well. She was supposed to start chemo today.. yet the MRI of the neck came back (she has severe pain) and now they want to radiate 10 sessions.
I am very new to all of this and pregnant with her first grandchild (so I have pregnancy brain) - my question is, are bone mets always treated with radiation or just when they casue severe pain. She als has pain the hip and knee...they are doing bone scans next week... if these come back as mets, will they consider radiation on three spots at once?
As all of you know... this is such a devastating thing to go through. My mom is 70, in great shape, never smoked and truly my best friend in the world. Sometimes I wonder how I am going to get throuigh the rest of this pregnancy (due in December.) Prayer helps and by the grace of God, I KNOW we will all get through this somehow.
Thank you in advance,
Holly
Pain - Epidural, injections?
in NSCLC GROUP
Posted
Thanks for the info and definitely for your prayers. It means so very much to me. Holly