Downside to Hospice and Palliative care only with progression...PAIN questions...

chemosmoker

Dear family,

I have a note or thought to share upon waking today. It is not new just to today, but maybe the time to share it is right.

I have been having new pains in my lower back, tailbone area, for a few weeks now. Seemed to come and go. At first, it felt more like I had slept on the wires on my electric blanket and caused a sore spot, not unlike the experience we have all had camping when you wake in the morning, realizing there was a small rock under your lower back that has decided to bless you with a really nice knot!
Well, it stayed a few days, then seemed to get better, or at least hurt less. So I discounted it as nothing more serious. Hell, we're getting old, too and things just start to hurt!

Well now that I have this next NEW pain to share, I have a feeling it may be more than a rock in the bed. lol...

The last three days I have noticed an extreme sensitivity and irritability around the vertebrae and spine area from just below my neck, to the upper part of my back before going below my shoulder blade area. So, maybe like 5-6 vertebra. It almost hurts just to touch the area, and a back rub there, that used to be a relief, is not like needles and not relief. Sounded like what Lee was describing before he had his MRI and confirmed his METS. I cannot even have an MRI as I have a pacemaker and it is metal, and inside of me!

So the point of my post and sharing is this; I am on palliative only care, hospice as most of you know. Therefore, I am not eligible for further CT, PET or scans to "see" if there are legitimate metastasis going on inside of me, which are inevitable, of course.

So there is a good chance that I an having new pain that is the result of the progression of the EC.

I would appreciate those of you who have KNOWN metastases that were in the form of new pain like these, that were then confirmed by CT , PET or scans and tests, so that I am know from you all, who I trust, what that felt like for you, and if I am off base or on target with my "assumptions."

I appreciate your input and I love our family. God bless you all. May you all be as pain-free as is humanly and humanely possible, for as long as God will allow us.

Eric

Wpturner05

No answer,
Eric,
I know you said you wanted to hear from those that have known mets to bones and no, I don't and neither does Kevin,
But I just wanted you to know that I am praying someone can help you here. It must be difficult just traveling the road assuming, but not knowing.

I am sorry I could not control myself, I just had to give you a bit of support . . . .

Whitney

Ginny_B

I don't understand why you
I don't understand why you can't have a test or scan. Is there some written or unwritten rule or something?

BMGky

Thinking of you
Have no info but want to let you know we hope you can get some answers and find pain relief. Surely, hospice can offer something. Let us know. BMGky

ritawaite13

Yes
Hi Eric,
I hate to be there bearer of bad news but I think you could be right. Greg had pain like you describe and his last PET scan showed that he did have mets to the bones in several places including his back and shoulder. Go for bigger and better drugs. During Greg's final days, we decided to not get him so drugged up that he couldn't communicate and that was a mistake that only lasted a couple of days. When he got so miserable that he became combative and was having severe hallucinations it was time for the big drugs to keep him comfortable. It was no longer about communication, it was about peacefulness for him. My advice, take the big drugs.
Thanks Michelle for your denial article. I think it hits home with most of us.
Love Rita

ritawaite13

Yes
Hi Eric,
I hate to be there bearer of bad news but I think you could be right. Greg had pain like you describe and his last PET scan showed that he did have mets to the bones in several places including his back and shoulder. Go for bigger and better drugs. During Greg's final days, we decided to not get him so drugged up that he couldn't communicate and that was a mistake that only lasted a couple of days. When he got so miserable that he became combative and was having severe hallucinations it was time for the big drugs to keep him comfortable. It was no longer about communication, it was about peacefulness for him. My advice, take the big drugs.
Thanks Michelle for your denial article. I think it hits home with most of us.
Love Rita

chemosmoker

ritawaite13 said:

Yes
Hi Eric,
I hate to be there bearer of bad news but I think you could be right. Greg had pain like you describe and his last PET scan showed that he did have mets to the bones in several places including his back and shoulder. Go for bigger and better drugs. During Greg's final days, we decided to not get him so drugged up that he couldn't communicate and that was a mistake that only lasted a couple of days. When he got so miserable that he became combative and was having severe hallucinations it was time for the big drugs to keep him comfortable. It was no longer about communication, it was about peacefulness for him. My advice, take the big drugs.
Thanks Michelle for your denial article. I think it hits home with most of us.
Love Rita

THANK YOU RITA and WHY NO TESTING OFFERED...
Rita,
Thank you for taking time in the midst of your grief to share with me the most helpful post so far on here to my question. That is what I was afraid of. My hospice nurse agreed, too.

As for everyone asking WHY I can't get PET's and CT's and so forth, hospice will not cover the cost and without anything beyond palliative care for me, TennCare/Medicaid see no good reason to pay for expensive tests to find out that I still have cancer, to put it bluntly.
In their eyes, I am going to progress and hurt more. Why bother testing to verify the expected. I kind of understand and really don't want to know. I just want more time, who doesn't. For now, I am waiting for Monday, to get the aching tooth pulled, so I can get back to focusing on the usually pain of cancer and mets that I was okay dealing with already!

Much love to all.
Eric

jojoshort

chemosmoker said:

THANK YOU RITA and WHY NO TESTING OFFERED...
Rita,
Thank you for taking time in the midst of your grief to share with me the most helpful post so far on here to my question. That is what I was afraid of. My hospice nurse agreed, too.

As for everyone asking WHY I can't get PET's and CT's and so forth, hospice will not cover the cost and without anything beyond palliative care for me, TennCare/Medicaid see no good reason to pay for expensive tests to find out that I still have cancer, to put it bluntly.
In their eyes, I am going to progress and hurt more. Why bother testing to verify the expected. I kind of understand and really don't want to know. I just want more time, who doesn't. For now, I am waiting for Monday, to get the aching tooth pulled, so I can get back to focusing on the usually pain of cancer and mets that I was okay dealing with already!

Much love to all.
Eric

Hi Eric
One would think the hospice team would be able to alleviate the pain as well as "guess" what is causing it. I know the hospice folks here had seen and treated it all, so they were very good about figuring out what drug to make Steve most comfortable.
The morphine was great for him, and perhaps because he was a "trained professional" (lol), he still could be good company and even do computer work and paint on the big drugs. It was amazing to know how much pain meds he was on and to see him chatting away, totally in charge and still being productive.
A funny: In his last week, he would be resting quite a bit while we visitors chatted around him. He would listen in lovingly and add his 2 cents when he saw fit. I had just uttered the words, "My Dad was Polish", and Steve opened one eye, and retorted "He still IS Polish! Indeed! Sharp as a tack even on the big drugs.

Hope you get relief from your tooth soon,
Warm regards,
Jo-Ann

chemosmoker

jojoshort said:

Hi Eric
One would think the hospice team would be able to alleviate the pain as well as "guess" what is causing it. I know the hospice folks here had seen and treated it all, so they were very good about figuring out what drug to make Steve most comfortable.
The morphine was great for him, and perhaps because he was a "trained professional" (lol), he still could be good company and even do computer work and paint on the big drugs. It was amazing to know how much pain meds he was on and to see him chatting away, totally in charge and still being productive.
A funny: In his last week, he would be resting quite a bit while we visitors chatted around him. He would listen in lovingly and add his 2 cents when he saw fit. I had just uttered the words, "My Dad was Polish", and Steve opened one eye, and retorted "He still IS Polish! Indeed! Sharp as a tack even on the big drugs.

Hope you get relief from your tooth soon,
Warm regards,
Jo-Ann

Morphine and Hospice and METS
Jo-Ann,
Thanks for the reply.
Yes the hospice team DID recognize that the pain is most likely mets, and the huge doses of Oxycontin, Oxycodone and Xanax that I am currently taking are working like a charm. They have upped me again as of this last week when the upper neck pain became noticeable, and right away I might ad. They ARE good.

As for Morphine, I TRIED it. It did nothing for my dad when he had surgery years ago, and I had the same experience. I am holding out hope that the liquid and IV forms do much more, as the 40MG immediate release and 100MG extended release tabs they gave me did nothing for the pain, and made me feel as though I had a head cold. Oxy's, on the other hand, KILL pain for me, and I have absolutely ZERO euphoria, side effects, or lack of awareness or dizziness of any kind. I love them.

I hope you are having a good weekend. I have an appointment with the Oral Surgeon Monday morning and I am asking them to pull it if it hurts. Their only issue is sedating me (a MUST for me and ANY dental or painful procedure) while I am on the opiates and terminal cancer. That made them uneasy, but I have letters now from Hospice and Oncologists in hand so they can't say they can't do it. Letters say NO HARM, DO IT.
Thank God!!

With love,
Eric

casp42

chemosmoker said:

Morphine and Hospice and METS
Jo-Ann,
Thanks for the reply.
Yes the hospice team DID recognize that the pain is most likely mets, and the huge doses of Oxycontin, Oxycodone and Xanax that I am currently taking are working like a charm. They have upped me again as of this last week when the upper neck pain became noticeable, and right away I might ad. They ARE good.

As for Morphine, I TRIED it. It did nothing for my dad when he had surgery years ago, and I had the same experience. I am holding out hope that the liquid and IV forms do much more, as the 40MG immediate release and 100MG extended release tabs they gave me did nothing for the pain, and made me feel as though I had a head cold. Oxy's, on the other hand, KILL pain for me, and I have absolutely ZERO euphoria, side effects, or lack of awareness or dizziness of any kind. I love them.

I hope you are having a good weekend. I have an appointment with the Oral Surgeon Monday morning and I am asking them to pull it if it hurts. Their only issue is sedating me (a MUST for me and ANY dental or painful procedure) while I am on the opiates and terminal cancer. That made them uneasy, but I have letters now from Hospice and Oncologists in hand so they can't say they can't do it. Letters say NO HARM, DO IT.
Thank God!!

With love,
Eric

Prayers and thinking of the two of you!

I do hope you find some pain relief and maybe everything is related to your tooth! I realize it sounds strange, but sometimes dental pain is worse than other pain. I've been in the dental field for over 20 years and sometimes the pain is just incredible. Wishing you lots of prayers and I hope they figure out what tooth is bothering you!

Lots of hugs,

Carolyn

Daisylin

casp42 said:

Prayers and thinking of the two of you!

I do hope you find some pain relief and maybe everything is related to your tooth! I realize it sounds strange, but sometimes dental pain is worse than other pain. I've been in the dental field for over 20 years and sometimes the pain is just incredible. Wishing you lots of prayers and I hope they figure out what tooth is bothering you!

Lots of hugs,

Carolyn

mets
Indeed Eric, it may unfortunately be mets, however, will knowing make any difference???? As you know, Lee found out that he had mets to his spine and ribs, but the course of treatment has stayed the same. They have been adjusting his pain meds, and are still trying to find the right balance. It seems that what works one day won't work the next, but I'm sure you already know that. I think that finding out made us emotionally more fragile, but no more far ahead in the fight. So, what's the point in finding out? (just my pessimism kicking in I suppose) I wish we didn't find out.

They did give him a steriod, I think it was dexamethasone (not 100% sure offhand) but they could only do it for a short time, as they feared the side effects would be to harsh. It seemed to help, and he really has not had any significant pain in his spine/shoulder since.

I'm so sorry that your pain management is still an issue, it just seems to never end. I'm thinking of you and Michelle always.
Love,
Chantal

unclaw2002

Daisylin said:

mets
Indeed Eric, it may unfortunately be mets, however, will knowing make any difference???? As you know, Lee found out that he had mets to his spine and ribs, but the course of treatment has stayed the same. They have been adjusting his pain meds, and are still trying to find the right balance. It seems that what works one day won't work the next, but I'm sure you already know that. I think that finding out made us emotionally more fragile, but no more far ahead in the fight. So, what's the point in finding out? (just my pessimism kicking in I suppose) I wish we didn't find out.

They did give him a steriod, I think it was dexamethasone (not 100% sure offhand) but they could only do it for a short time, as they feared the side effects would be to harsh. It seemed to help, and he really has not had any significant pain in his spine/shoulder since.

I'm so sorry that your pain management is still an issue, it just seems to never end. I'm thinking of you and Michelle always.
Love,
Chantal

Eric,
And it might be a
Eric,

And it might be a change in the weather, arthritis or like you said just some pains from getting older. Before my dad went into Hospice he had pains in his shoulder, really bad ones and he was sure that the cancer had spread there. Well they did the scan and guess what --- it wasn't cancer but arthritis. So he got some steriod shots, and his shoulder felt better. Perhaps since they can't do a scan they could try a steriod shot - if it wouldn't hurt --- perhaps it could help. I dont know what they do to help relieve the pain from bone cancer. So my comment may be useless.

Good luck with the tooth --- I hate going to the dentist and like you could never have a tooth pulled without being put under, or given something to make me not care.

Enjoy the rest of the weekend.

Lots of love,
Cindy

LilChemoSmoker

Daisylin said:

mets
Indeed Eric, it may unfortunately be mets, however, will knowing make any difference???? As you know, Lee found out that he had mets to his spine and ribs, but the course of treatment has stayed the same. They have been adjusting his pain meds, and are still trying to find the right balance. It seems that what works one day won't work the next, but I'm sure you already know that. I think that finding out made us emotionally more fragile, but no more far ahead in the fight. So, what's the point in finding out? (just my pessimism kicking in I suppose) I wish we didn't find out.

They did give him a steriod, I think it was dexamethasone (not 100% sure offhand) but they could only do it for a short time, as they feared the side effects would be to harsh. It seemed to help, and he really has not had any significant pain in his spine/shoulder since.

I'm so sorry that your pain management is still an issue, it just seems to never end. I'm thinking of you and Michelle always.
Love,
Chantal

Thank you Cindy and Chantal!
Cindy,
Thank you for the suggestions. It is getting colder out and thank god we are going to Florida in a couple of weeks! Warmer weather here we come! WooHoo. We will hold hope that it brings better pain management!
Hugs to you!

Chantal,
With all you are going through, you still find time to post to others. You are so strong and caring. My thoughts have been on you, and you say yours on me and Eric...LOL. I have been sitting on edge waiting for a good change for you two!

He is going to get the tooth pulled, and we got clearance from Hospice to allow the dentist to do whatever they need to do. They would probably do a scan if we kicked and screamed for one, but I think we are both at that point of not really wanting to "know". The pain between the shoulder blades is unchanged, as that has been there for some time. It is a new pain that has surfaced over the last few weeks that is in the vertebrae in his lower neck (you know those ones that usually stick out when you put your head down in a book or look at your shoes...) but his have become sensitive to touch and have a lot of pain when he looks down. The other pain is in the hip bone or tail bone area, like when you have fallen on your tail bone in the ice, only he hasn't fallen. The nurse agreed that it is probably bone mets and that has been enough for us to know I guess.

Again, thank you for your post and time given to us. We are so much more concerned for you (WE THINK...CAPS FOR LEE!) and hope this evening meets you with some much needed rest.

Love to you!

-Michelle

chemosmoker

LilChemoSmoker said:

Thank you Cindy and Chantal!
Cindy,
Thank you for the suggestions. It is getting colder out and thank god we are going to Florida in a couple of weeks! Warmer weather here we come! WooHoo. We will hold hope that it brings better pain management!
Hugs to you!

Chantal,
With all you are going through, you still find time to post to others. You are so strong and caring. My thoughts have been on you, and you say yours on me and Eric...LOL. I have been sitting on edge waiting for a good change for you two!

He is going to get the tooth pulled, and we got clearance from Hospice to allow the dentist to do whatever they need to do. They would probably do a scan if we kicked and screamed for one, but I think we are both at that point of not really wanting to "know". The pain between the shoulder blades is unchanged, as that has been there for some time. It is a new pain that has surfaced over the last few weeks that is in the vertebrae in his lower neck (you know those ones that usually stick out when you put your head down in a book or look at your shoes...) but his have become sensitive to touch and have a lot of pain when he looks down. The other pain is in the hip bone or tail bone area, like when you have fallen on your tail bone in the ice, only he hasn't fallen. The nurse agreed that it is probably bone mets and that has been enough for us to know I guess.

Again, thank you for your post and time given to us. We are so much more concerned for you (WE THINK...CAPS FOR LEE!) and hope this evening meets you with some much needed rest.

Love to you!

-Michelle

Thank you ALL
To ALL,
I thank you ALL, and I second Michelle, in that it amazes me so much how you all will take the time, Chantal, Rita, ANY of you, with all you have going on on your own plates, taking your time to answer and care about me, think about us. I know, we do the same, it is our way, our family. I am so grateful for this site. I don't think I would even BE here still at times if it weren't for all of you and this resource. I mean that in a good way. I'm not offing myself. THAT is happening all too fast as it is without any help from me sadly.
No pity either. Just fact as we know around here. Just the facts please. ma'am.

God bless you ALL and PLEASE grant you PAIN FREE TIME TOGETHER. (CAPS for LEE)

-Eric