patty
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I am glad you heard from Patty. I am sure that your music is soothing to her soul. Thank you! Poor girl needs a break.
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Patty, never feel any pressure to post on here. We love and welcome when you are well enough to join in. We hold you in our hearts the rest of the time.
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patty--hugs sweet girl! Please God give our sweet Patty some relief
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Sending patty a gentle hug...
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yes patty, What feline says, just take care and know we are all thinking of you!
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Waving Hello to you Patty. Hoping you are feeling better... Thinking of you.
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Sending you get well kisses 😊
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Feelingfeline - that waving kitty is so cute!
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finally waving hello and sending giant hugs of appreciation for so much love and support. Today I finally got on bco long enough to catch up on this thread anyway. - ki da nervous to start reading other threads. Really couldn't take bad news about one of our sisters - I am wiping away tears. Just completely feeling loved by the support ESP since I've been missing in action.
Brief update for now will bbl when I get some more energy to sit up right.
So the last couple months the I've been bed,couch and recliner bound. The back pain is out of control due to progression Exloda. No organs still bones only. Seen pain mgmt after my fall and had MRI which shown no fractures only progression. About only thing they can do is a shot with some long and short acting pain meds. May get relief from 1-30 days. Ive had them a couple times and got like a half day relief. Really not worth the time , effort or money. The tailbone just has to heal from falling from the top step - prob at least 20 stairs I fell down. The rest of the back pain is just the cancer.
Things have been so so very hard not just for me but my family. They have watched me literally writhe and cry in pain. Dh and I talked very seriously about divorce for awhile. My original idea but I talked dh into it. It's just to hard on kids and dh to watch me like that ever day. They need to know some normal life for awhile. Not every day being quiet, lights out, going nowhere cause mom's sick. And honestly the break half a week sounds good to me. I used to think if I ever got a divorce and had to share custody of dss that I just couldn't live but now I know that's not the case. Would probably be beneficial to everyone. Only the finances were a lil concern but after looking at rental places I found they were doable. Dh and I agreed it would've best for everyone. And after 25 years of marriage ( and living in this same house) and love we are not to the point of arguing or hating each other. It's become more like patient and caretaker or roommates. Great friendship and much deep love but not IN love. Had not told dss yet. Thinking them going from seeing me miserable every day to seeing me rested every other day or so would be easier on them when I die. Since they will be somewhat used to not seeing me every day. Shared custody was not an argument. We both want the boys to come and go between our houses as they want and i can take it. However after talking to Mo yesterday and finding out we are pretty much at the end of the road on tx and pain relief it doesn't make since to follow thru with separate housing. Dh had promised no matter our living situation he would be here whenever I need anything. Still do my grocery shopping and pick up meds and helping around my apt. , Etc. He wants to be there in the end holding my hand making me comfortable. I want that to I just don't want to have to put him thru that. Anyway that idea is gone for now. I started not to post such personal business on here publicly but I decided to anyway. I've always been honest and open about my feelings here. Surely there is at least one person who is or has gone thru exactly what I am talking about.
Mo said I am pretty much maxed out on pain meds. Said he doesn't have any other patient taking that big of strength and qty as me. Next would be permanent or home health pain pump. Boo. Very very scary to think my pain is not and will not be controlled. Since the Exloda is no longer working the final oral tx is AA. Affinator and aromisin. Mo was calling it by a different name yesterday so I didn't know what he was talking about and told him i needed a few days to research tx. AA causes serious mouth sores seems to be the worst side effect people here have complained about it. And it looks like coating the pull in cool whip or whip topping prevents it from touching your mouth thus no mouth sores. The other txs are IV chemo and I am refusing them. Everyone has their own ideas about when enough is enough and that's OK. For me. I choose NO IV txs. Hate the toxicity. Been in hospital way to many times already. So I have to choose try this one last tx and hope it works or buys me enough time for the next trial or just quit and focus on living whatever I can with this pain. Mo suggest I continued exgeva to prevent fractures no matter what decision I make. He said so many bones are near fracture due to cancer eating holes in them and making them weak and brittle. The scary part is even when I quit tx there is no telling how long I will live since it is only in my bones. Mo said could be months or years. Who knows. Ugh. So so frustrating. Which I lived in a right to die state. Discussed with mo if I quit tx he will still prescribe my pain , nausea meds and Any other issues that arise due to cancer until serious enough progression for hospice to take over. Such serious decisions to be made and to be made by me. Yikes ?!?!
Many hugs. I've exhausted my box and brain. Having hard time putting the right words together to make sense. Dh and dss said last weekend 2 days I made no sense talking. Talking crazy off the wall stuff and changing topics midway thru. A few times they questioned me and I realized I had no idea what they or I was talking about. MRI did not include head. So no would like to do scan but I say wait and see. If I am done with tx then k owing really doesn't help one way or another I guess. I have been much better about making sense, at least I think so. Could have been all the pain meds from those days.
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Patty, I'm so sorry you are in so much pain. Have you considered seeing an orthopedic oncologist that specializes in cancer in the back? Not sur if there is one close to you but it would certainly be worthwhile to investigate. There is one in Charlotte, NC that has had great success on relieving bone pain from cancer. Since you only have mets in the bone it would be a shame to stop treatment. If they could get your pain under control, your quality of life would be better and then life would be worth living. Just a thought. I did the AA combo. With the right drugs I didn't have any trouble with mouth sores and found it very doable. Might be worth a try. Wishing you only the best
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Oh sweet Patty......
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Patty, please look into the information Shep gathered for you. Shoot, I just realized the links I texted you do not work. I am sorry. Will try again.
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Ok here it is from our mischievous but loving Shep:
http://www.cancer.org/treatment/supportprogramsser...
The link above is for The American Cancer Society's Hope Lodge. They have nice places to stay for free that are near treatment centers.
Some Hope Lodges can accommodate the patient and their family. All provide transportation to and from appointments. Most provide meals.
There are other links on that page for help with treatment and travel costs - including free airfare.
An NCI designated cancer center offers the best of the best for treatment. The link below is the national list of centers.
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Patty,
So, so sorry for all your problems!
Have you had radiation in the spots that hurt and the ones that are close to breaking?
Again, prayers and hugs!
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Ah geez Peppermint! I see you on one thread, and then you are gone, and then here you ARE! Love you girl! So what's all this rigamaroe about those Docs not knowing what is wrong with you? I think I would hang up all those remedies and start on straight whiskey....
Holy Crap, I've never heard of so many meds! And sounds like they aren't helping a bit! And you talked out of your head....??? I'm always thinking of doing that.... So we will make no sense together!
You want some shrimp salad? I just invited everyone on Insomniac's and you guys can come too!
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Patty. So sorry you have been dealing with such terrible pain. I hope you can find someone similar to the NC specialist mentioned. Your DH has always sounded like a good man. Isn't "in love" the temporary madness that brings us together in the first place. Real love is a different story surely, it's the long haul stuff. Sincerely wishing you well as you find your way forward.
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Oh Patty.......
The pain from bone mets is overwhelming when it's bad. Of course you don't feel romantic love right now. Companionship, compassion and trust shared with someone you can truly depend on ...... that's what marriage is supposed to be. I pray that is what you have.
Bone and nerve pain needs to be treated differently. Have you been able to try Cymbalta combined with Tramadol or Nuerontin? Are you still getting Zometa or some other biophosphonate?
Not telling you what to do...... (yes I am!)
Have someone help you with the info Loverly posted. Call the American Cancer Society - they have resouces to help you. Try to coordinate with them a plan for getting you to an NCI Cancer hospital. Make some calls to one of the NCI hospitals to ask about a consultation. Maybe you can get a consult over the phone?
Your story isn't over yet. This is just the crappy part. A few more pages and the next chapter will begin. I just know those pages will be full of good stuff........ best seller material!
Love you girl 💟
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Oh Patty, I am so glad you checked in but am so, so sorry about all you are going through. I am normally not one to give advice (especially on this forum where I am not even supposed to be); but you mentioned a pain pump. I don't know if it would help you or not, but might be worth serious consideration. My mother-in-law had a pain pump with a morphine drip. She could adjust the dosage as needed and it did give her a better quality of life. Sending many hugs your way......
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Patty
I completely get what your saying about your life, your kids, DH and treatment. I've felt many of those same things. Thank you for sharing. You are not alone with your reasoning.
Pain pills can make you crazy. I take cymbalta. I don't have extensive mets like you or unbearable pain.
University of Kentucky Markey Cancer Center in Lexington Ky is a NCI. I would be happy to meet you. I'm very happy with them. Not sure if you're up to a long trip.
Are you on pain patches? Whatever you decide is best for you and your family, we will back you 100%. We just hate the pain you are in.
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Hi Patty, I am so sorry to hear about how hard things are for you right now. I don't know what pain meds you are on but I wanted to share my experience with you to see if anything I take could help you.
I have extensive bone mets from the get go and severe pain (still have pain but it's being relatively managed). My bones are like swiss cheese, mets everywhere, several compression fractures in my spine, fractured my pelvis, ribs, pin in my humerus due to bone erosion yadda, yadda... Like me you probably have nerve and bone pain. I'm sure you've had radiotherapy so I'll just talk about medication. I have been to both a pain management consultant and a palliative care consultant. The pain management doc. prescribed Palexia (tapentadol) but the palliative care guy took me off it. Pain magement gave me several nerve block injections to my spine, I don't know if they worked or not but I felt it was worth a try. At this point I want to say that I feel I am torn between both consultants though palliative care guy is the one I see mostly. I was on Diclofenac but had to stop taking it as it killed my stomach though it is good for pain. The pain management doc. prescribed Palexia (tapentadol) but the palliative care guy took me off it. Pain magement discussed having morphine pain pump which he said many people with chronic pain use. I decided to delay that as long as possible.
What I take now is Lyrica for nerve pain, a dosage of 150mg twice a day works for me, and a fentanyl patch 75mg every 72 hours, together with 15/20mg oxynorm as needed for breakthough pain (and nexium 40g for my stomach). I also take paracetamol. I have had several nerve block injections to my spine, I don't know if they worked or not but I felt it was worth a try. Another patch I tried was lidocaine but it didn't do anything for me. I also tried to take cymbalta but it made me so sick I was hospitalised for several days but again please rem. we are all different. Just to give you a heads up, I was extremely sleepy and dopier than usual for days as my body adjusted to taking the meds, in fact I was known to fall asleep during conversations, but now I'm the new normal me, dopey, fatigued, but here and awake, more or less!
I noticed that you don't want to take chemo. My first treatment was aromasin and faslodex for 4 months and I had progression on it. I was then px taxol and have been stable since then. I was on taxol for over 2 years, it was tough especially as time went on but many people have found it doable. The main thing is it stopped the progression for now. I have been on faslodex and femara for the past couple of years and am still stable (I hope I haven't jinxed myself!).
Patty, my heart aches for you and your family. I wish you peace and comfort.
Hugs xx
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So sorry to hear about the pain but like some have said here, it might be worth trying the pain pump. My grandma had that when she had cancer and it really helped her. Didn't get rid of it but made it more manageable.
Wishing you comfort, with much love.
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O Patty, I'm so sorry for all the pain, and that you are maxed out on pain meds. I hope the others' recommendations of the orthopedic oncologist or the cancer centers can give you some help there.
I'm concerned about you and your family. I understand that you are trying to spare your family from watching you writhe and cry in pain. Do you really need a divorce to do that? Maybe you need a place for respite. You could have a rental place where you can rest, and see the boys when you want. They could come see you on good days, and they would get used to you not being around all the time. It would spare your family a lot of expense.
I know that your awesome husband of 25 years is truly your soul mate. I understand that right now you are feeling "great friendship and much deep love but not IN love." It's true that many marriages have ups and downs. But it sounds like your Hubby is still there for the long haul. Maybe neither of you are feeling romantic love right now. Maybe hubby was just humoring you? Certainly this stinking cancer had put a terrible strain on your marriage. But I don't see that you have to get a divorce because of it. Please don't let cancer take your marriage as well.
Love you, sweet Patty,
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Poor girl you are going through so much right now. What about a bone strengthener like bisphosphonate (zometa)? Note, It's bad enough spelling some of these names mush less trying to pronounce them.
Mike
After NED for a year on tamoxifen my wife has a couple small mets to the spine. The doc is waiting a bit for them to get bigger so as to be biopsied. DW could have one of these as the progression: Tumor removed from breast was ER+PR+HER2-, 100% estrogen, grade 1. At the center of this tumor was ER+PR+HER2- 30% estrogen, grade 3. 19 lymph nodes removed and 9 had triple negative metaplastic BC.
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Aoibheann.... I read what you wrote to Patti ! Some really great things have been said... by all you gals and "guy"..... maybe worth a try ?
Mike, are you saying "after" taking Tamoxifen, you wife got mets? Did they decide her cancer had spread, or a new cancer? Just wondering if the Tamoxifen helps some people. It might help a few, but if you get cancer again, or it has spread, did the Tamoxifen work? I know we all will try almost anything to make sure we don't get cancer again, or that it doesn't spread.... but SOMEtimes those treatments are harder on us than the actual diagnosis.
And now Peppermint! Don't go thinking about no divorce! I missed that in your post, but Mominator reminded me.... If these Husbands of ours can put up with us, all these years, they can surely stick it out...(no pun intended) until one of us gives up the ship.
Now Mike... I don't understand even 1/2 of what you said, but thanks for coming on here, and trying to help Patti...
Ain't no turnin' back from bad decisions.... Just hang in there kid.... we'll give you advice when you can't help yourself.... and we're always here. Love you! xoxo
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Chevyboy, maybe this will make things more clear. Dr said her case is the most complex of any at her Kaiser Oncology.
My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.
Progression with two spots on spine as of this October 2016. Oncologist wants to wait a few months to let it grow big enough for a biopsy. Complex case as she has had 3 different types of BC: ER+ 100% estrogen grade 1, ER+ 30% estrogen grade 3 and triple negative Metaplastic BC.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has three cancers, one ER+ PR+ HER2- grade 1, 100% estrogen, another inside that was ER+PR+HER2-, grade 3, 30% estrogen and another metaplastic triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign.
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Patty, I am glad you felt ok enough to post, but sorry to hear you are in so much pain still, and that you have an additional emotional component happening.
Not sure what the laws are in AR, but, CBD oil helps me with my pain, and my sister has fibro, and it is the only thing that has stopped hers in 25 years. Non-psychotropic, so no disorientation either. Many states have legalized it. Just a thought.
If you ever want of need to chat privately, I am usually up quite late. If you have any kind of instant messenger, I always have it on.
Still sending you a ton of love!
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