Stage IVs - help needed

[weisssoccermom]

I know that this isn't necessarily the correct forum but I need some help. My friend, Vicki, has stage IV non-small cell lung cancer that seemingly has spread only to her bones. There is no hope with this type of cancer. Even with chemotherapy, the prognosis isn't good and Vicki got so sick from radiation that her doctor wouldn't allow her to go on chemo. Vicki needs to find some help with how to cope and so far, she hasn't found either an in person or online type of support group for stage IV patients who are, to put it bluntly, dying. Again, there isn't no hope and Vicki is in extreme pain. As we all know, pain (regardless of how it comes) is debilitating, makes it difficult to cope, affects our appetite, etc. and while Vicki is in palliative care and they are trying to control her pain, nothing has worked. Bone mets are supposed to be the most painful type of pain to have to deal with.

Vicki is also dealing with the fact that she can't walk and is basically bound to her chair, bathroom or bed....I can't imagine how that must make a person feel and at the same time knowing that you are going to die. This is all so overwhelming and she needs some help. Does anyone know of a forum/support group that is a place for patients in the same position as Vicki....basically knowing that there is nothing more to do.....to seek out others in the same position as they are? I can only help so much.

If anyone can give me any help, please respond. She needs to know how to cope...she needs to know what to expect (not necessarily what is coming at the end...she has seen her relatives die)....she's anxious, in pain and needs some help.

Thanks
Jaynee

[KElizabeth]

Hospice, or pallative care should have resources for support like counseling and therapeutic activities. Call the case worker and ask her/him to help you line up some support for this stage of the journey. When we did hospice either my mom, they had materials to help each member of the family to cope with our situation.

[Cowgirl918]

I would start with your local or state office of the American Cancer Society. If Hospice is not meeting her needs I would consult with them or another healthcare group. Hospitals often have palliative care services now. DTanviga (? forgive spelling) on this forum has mentioned a program that is being started to help meet the needs of cancer patients in various communities. I would certainly demand something from her doctor as adequate pain control is a patient right.
If I were her friend, I would help her develop three goals, just three. I would help her to write them down and then focus on achieving those very simple goals. She may need some structure as well as support as she travels this path. What are the most important things to her right now? Reading to patients or music is often a great relief but someone has to structure the activity, not just suggest. Let her talk about her fear and her pain and then move on to goals etc. I hope some of this is useful. Just don't let her walk alone. That is the best we can do. I will pray for both of you.

[weisssoccermom]

Vicki has questions....pertaining to how others deal with this diagnosis...knowing that their time is short, etc. She wants to know how to cope, what to expect, etc. She is on palliative care but it isn't cutting her pain. Just this week, she found out that the cancer has spread to her skull as well as her collarbone and both shoulders. In addition, it is in her back, spine and both hips. I can't even imagine her pain.
The other problem is that her husband isn't facing this....basically he is just putting his head in the sand and not dealing with it. He says things such as 'If this were me, I'd be doing chemo' or 'what is the point of doing all of this (I assume he means the appointments, etc.) if she won't do the chemo'. He's a very nice guy...super intelligent....but he's always been a very positive type of a person and facing the fact that she is dying isn't easy for him. Hospice won't offer them much more in the way of services other than everything would be free. She does have a social worker, nurse and pain control specialists all who come to the house but...according to her, she doesn't feel that she can talk to the social worker about her feelings (or anyone else for that matter) as her husband doesn't want that type of negativity around him.
Vicki has gotten all the practical things done....changing the way you pay bills from online to paper, knowing where she will be buried, what funeral home to use....things like that but she has emotional needs that need addressing and she doesn't know where to turn. She desperately wants to and needs to talk to others in similar circumstances who have no options.

I am there for her and try to relate to her situation as best I can but obviously I am totally cannot. I talked to Terry for quite some time prior to her passing and spent time on the phone with Belle in the few months before she died. Talking to people and hearing their concerns, fears, etc. is helpful but it's not the same as either being in the same situation or being the caregiver of a person who is dying. This is why she is looking for people who she can 'connect' with....who she can talk with....perhaps a caregiver of someone in this situation (or was in this situation) or some other stage IV cancer patients who have few, if any, options.

Vicki's own goal is to be painfree. It was heartbreaking to listen to her today....she, like most of us, felt that they would control her pain yet I fear that the bone mets are just too many to be adequately controlled. They have tried pain patches, pills, etc. I suggested trying medical marijuana....she doesn't know if her docs will approve it for her...but at least I put the bug in her ear and hopefully she will, at least ask about it. Does anyone know about pain control via an epidural that has a pump that the patient controls?? Another friend mentioned it as her friend had it in her last weeks.

It's hard knowing that your friend of 25 years is dying and there's nothing that I can do about it. We've avoided talking about death...basically skirted around it until I brought it up to her today. You could tell it was a relief to be able to talk about it because obviously her husband doesn't want to. We spent about an 90 minutes on the phone....talking about pain control, what to do with the dogs, what the end might be like, her fear and anxiety, etc. There were a lot of tears but honestly, I believe it was helpful for her to be able to have an outlet to talk about it.

Anyway, any and all suggestions would be helpful. Thanks to those who already responded.
Jaynee

[Nik Colon]

Pain pump, someone else on here was asking about it also. I don't know anything about myself.

There are so many different pain meds out there. Do you know which ones she has tried? Any that help her more than others? Combos of certain ones that help different pains?

[esk2poo]

Jaynee,
Sorry to hear about your friend. I just sent you a PM with a website.
Allen

[MissMolly]

Her Palliative Care team does not appear to be treating her pain adequately . . . or is it that Vickie is not vocalizing her level of pain . . . or is Vickie trying to "protect" her husband by not asking/demanding for more intervention from Hospice?

Fentanyl lollipops, quick acting for severe breakthrough pain.

Liquid morphine suspension (Roxanol) taken sublingually is often better absorbed and metabolized as it bypasses the GI tract.

The Fentanyl patch is available in varied doses up to a 100 microgram patch. Dosing with more than one patch at a time is an option (ex. combine a 100 microgram patch + a 25 microgram patch).

The Fentanyl patch can be ordered to be changed every 48 hours instead of every 72 hours . . . Increase the frequency of changing the patch to every 48 hours. Most people experience a steep drop-off in pain control with the Fentanyl patch after 2 days/48 hours. Switching the Fentanyl patch from a 72 hr dosing/changing schedule to 48 hour dosing/chainging schedule can make a significant difference.

IV administration of opiate/narcotic with a pump that a person wears with a small fanny-pack is an option. IV administration of an opiate/narcotic is far more effective than oral pills.

Your friend's situation sounds so very, very sad. Better relief of her pain should be a top priority, imo.
- Karen -

[KElizabeth]

Your post really shows your love and respect for your friend. She is lucky to have you. I know how hard it is to find someone to talk to candidly about preparing for death. I try to slip it in to normal conversations here and there because my husband also won't face this dying thing. I'm still fighting , but I won't go down unprepared. I went through that with my mom and it was too much for me. talking it out is very therapeutic, I hope some of the earlier suggestions help her find the support she needs.
Hugs to you both!

[dianetavegia]

This is inexcusable! I am so sorry for your friend's pain and for your heartbreak for her.

I am a Cancer Care Minister through our church and Cancer Treatment Centers of America but don't know if there is a group near your friend. They have counselors, therapists, patients, former patients tho none would be at this stage. Possibly a care giver might have dealt with something this severe.

This reminds me of a HOUSE, MD episode where Dr. Wilson has a patient who was in so much pain and the amount of meds the hospital allowed wasn't stopping his pain. The 'pump' had a code the nurse or doctor could enter to raise the amount of meds allowed and as Wilson left the room, he told the patient the code, closed the door and waited outside the room.

I can't imagine what your friend is going through. I'm so very sorry. Very, very sorry.

Diane

[Delinda2]

My heart goes out to you and your friend. Uncontrolled pain is my biggest fear & it makes me so angry that your friend is suffering. I can't imagine how it makes you feel. I can't add to the info already shared, so will just wish you luck in finding the best support for your dear friend. Hugs to both of you. XXOXO, Delinda