1st Palliative Care Appt.

[PJBinMI]

I've had quite a week! Monday had ureter stent exchange, under anesthesia, Tues the C-Pap guy stopped by to bring me an oxygen tester, and then Wed my husband joined me for my first, in over 18 years as an MBC patient, appt with the Palliative Care Physician Asst. We went to that appt expecting a "typical" cancer center appt of 15-30 minutes but ended up with a whopping 2 1/2 hours of discussion of all the side effects/symptoms currently bothering me, hopes for the future, end of life plans, and I may be forgetting a thing or two! Both of us really liked this woman alot, felt listened to and understood. She increased and changed my pain med (which is working super well!), added an anti-itch med, and increased gabapentin from two times a day to 3 times a day. She also suggested CBD oil for sleep, improved pain control and maybe something else. Palliative care focuses on quality of life. She recommended a specific shop for the CBD products and I did go there but probably should have pushed for cbd oil--the people there recommended gummies and recommended cutting them in half. I ate about a third of one the next day and I think it messed with my head in a bad way, not crazy bad, but just a tad off balance bad. The cancer center that's affiliated with the big medical corp that most of my doctors work for has only recently included the Palliative Care team, and I'm really wish I had been referred there several years ago. My husband and I left that appt feeling listened to and heard, optimistic about the immediate future, and so relieved! The med change has gone well, though I'm still an itchy mess (likely from neuropathy, or maybe neuropathy plus hay fever like allergies). If anyone here has suggestions about neuropathy related itchiness, I'd love to hear about it! She also gave me written material about exercise and yoga for advanced cancer. nutrition, and probably more that I am forgetting. Oh, sleep, anxiety and end of life planning. So much to absorb! Probably best 2 1/2 hours with medical team in years! So much solid info! And we both liked her alot! I'd suggest finding out about Palliative Care where everybody with cancer is seen! My husband suggested I mention that something new increased my difficulty with balance and I fell head first onto the corner of our headboard when I was going to bed in the dark. Lucky I didn't damage my eye! I have a black eye like bunch of bruises plus lacerations near my eye but vision not effected and eyeball looks as usual. Very little pain but very dramatic appearance, like I got into the boxing ring with somebody who really knew what they were doing! Anyway, I have been feeling much more hopeful about whate4ver is coming next and I know that I can always call this team!

[Partia]

That's excellent that you got so much time and information and that she took time to listen. I go to the #1 hospital in MI. I have had MBC for 6 and a half yrs and have not gone to a palliative doctor. Unsure as to whether I should or not. My pain has been increasing.

[PJBinMI in reply to Partia]

Are you being treated at U of M? I go there for second opinions. You can call and ask if they have a Palliative Care team you can see. Those folks are really up to date on pain management. Better to attend to it a bit too soon than a bit to late!

[Partia in reply to PJBinMI]

Yes. Thank you.

[mariootsi in reply to Partia]

Well worth a visit with palliative care!

[Partia in reply to mariootsi]

I am thinking about it for sure. Have you done it?

[mariootsi in reply to Partia]

Yes. My primary care doc is also a palliative care doc. Great decision!

[Partia in reply to mariootsi]

Very convenient!

[Lilykristymichael in reply to Partia]

Hello Partia: I also am being treated at U of M. I’ve been on Ibrance and Arimidexfor three years with no progression. Have never had my oncologist mention a palliative care team. I need a knee replacement that has nothing to do with cancer, take Tylenol and ibuprofen for pain, but oncologist has never mentioned anything about other pain meds. Do you know if they have a palliative team there? I so appreciate all who post on this site. So much valuable information. Thank you all. Madlyn

[Partia in reply to Lilykristymichael]

I'm sure they do but I will find out and try to get back with you. They're the number one hospital in the state of Michigan. I'm sure they do. I think because I've been on the same pain meds for like 6 years and never complained they just didn't bring it up. Because I never bring up anything new. I'm not sure if I mentioned I've been on iBrance and letrazole for 6 years. Have you ever complained to them about any pain or do you have pain?

[Lilykristymichael in reply to Partia]

Hello Partia: I have no,pain from my cancer only knee pain as I will be having a knee replaced from an old skiing accident on Sept 14. Can you tell me who your doctor is? I don’t know if doctor names are allowed on this site or not. But I thought I would ask. By the way,where do you live? I live in Brooklyn,Michigan, a mile from Michigan Speedway. I hope you have a wonderful day. Madlyn

[Partia in reply to Lilykristymichael]

I was in Canton for years but now in Westland. My doctor is Dr Jeffrey Smerage.

[Lilykristymichael in reply to Partia]

Thank you Partia.

[Hidden]

I am so pleased you had such a positive meeting after so long. It is so important to be listened to.It’s also good to know what a palliative care team does. Something we should all probably ask about earlier than we thought.

Thanks for that

Clare

[PJBinMI in reply to Hidden]

Thanks, and now I'm wondering if I should have asked about palliative care a couple of years ago! I have so many physicians I've felt like my body has been chopped into pieces for them, with nobody looking at the whole me, except my poor ol' overworked primary care doc who has been wonderful in person but may be intimidated by all those specialists and how many diagnoses I have! The palliative care PA sure looked at my whole self, body, mind, spirit, emotions, relationships etc etc etc and was utterly delightful to boot!

[Aquadog]

Wow - that sounds like an amazing appointment! You got actual answers and information - yay! I've been on this MBC journey since February 2017 and just this last week I decided I need some palliative care (unrelieved pain). I called my oncologist and was stunned to find out they only have palliative care in Austin - I'm just north of Dallas. This is a large, reputable oncology group (220 locations) and I've been happy with my treatment, but apparently, I'm on my own for anything outside of treating actual cancer.

[PJBinMI]

I'm sorry that there isn't palliative care specifically available there for you. Fire up the self advocacy and push your onc for better pain control! what you are unable to do, impact on sleep. If they ask you to rate pain on a scale of 1-10, put it in a higher number. There have been a bunch of changes at the cancer center I go to, and I'm pretty sure the palliative care is new.

[kokopelli2017]

hi PJB. wow.....speechless. that is amazing on so many levels. they spent all that time with you and all that great information👍. and they even addressed your pain and changed up your pain meds. so impressed. does that mean your oncologist is no longer prescribing your pain meds....the palliative care team is now taking care of that?

my oncologist (before she retired recently) mentioned if I wanted palliative care. I said yes. she had a social worker call me. the social worker told me that palliative care is a 'concept of care' and that my oncologist is also my palliative care doctor. what???? I didn't understand what she was saying. but apparently at my cancer center there is no palliative care team. I was so disappointed. but after hearing you, I guess it is different depending on where you go. I know I am undermedicated.

so happy for you. what a great experience.

sending hugs.....

carole XO

[PJBinMI in reply to kokopelli2017]

thanks! Let your onc know about that conversation with the sw, and push for better pain control. Describe the pain, where it is, how painful and how it effects your normal activities. Does it effect your sleep? Wake you up? Make you cry or yell out? Don't wait for your next appt but call tomorrow and if you can only reach a nurse, tell them how bad it is and push to speak directly to the onc or at least leave a voice message

[kokopelli2017 in reply to PJBinMI]

hi again PJB. good advice. but I may have to hold off a bit. would you believe I do not have an oncologist at the moment. mine retired on July 1st and the cancer center was very much behind the 8 ball on this. she had many patients and they did not assign us new oncologists yet. I am not happy about this, obviously. they should have had this all taken care of before she actually retired. I made a request for the onc I prefer going forward, but they could not verify if that will occur. my next appt not until end of Sept but with who, I have no clue. does not instill confidence. I guess I could call and speak to nurse and see what she has to say. I recently tore the tendons and muscles in my R hip and they did increase my pain meds but NOT enough!

thank you again for your input....much appreciated.

carole💛

[PJBinMI in reply to kokopelli2017]

When my first onc retired, it was a mess, too! No warning, no chance to say good-bye or ask for recommendation about next onc. I r eally believe that medical organization has deteriorated alot in my lifetime, even in my years with cancer.

[kokopelli2017 in reply to PJBinMI]

thanks for sharing that PJB. doesn't make it right but at least I know that my cancer center is not the only one doing this kind of 'sloppy management'. I agree with your comments! carole XO

[mariootsi]

I have been seeing a palliative care doc for awhile. Very supportive.

[PJBinMI in reply to mariootsi]

Good to hear!

[Missmaddie615]

Thank you so much for sharing all that wonderful info, I learned a lot! You inspired me -I will be calling to see if my Cancer Center has a palliative care team. Blessings to you!

[golfing21]

Hi I just want to let u know that u are great! You have given so much encouragement to everybody. Now that you are experiencing a little difficulty _thank u so much for sharing that also. I have been on this journey for 2 & a half years. I am on the original regime & it is going well However we all need to be aware & yr honesty is so refreshing. Please keep us posted. I have not posted much but I will try to improve. Lou Anne

[PJBinMI in reply to golfing21]

2 1/2 years on first treatment is wonderful, and promising for more years..... plus, I'm convinced that those of us who are out here looking for info about MBC online are likely to do better than "average." We're likely to be seeking information, advocating for ourselves with our oncs, likely to report new symptoms side effects, etc. Unfortunately, not all of us with cancer have the resources to deal with it! (Kitten keeps walking across the keyboard, grabbing fingers a6n7d 44re and being an adorable little pest! lol)

[bracelets1]

This was definitely a wealth of information. Thank you so much for sharing and educating someone like me who is still new to the journey. I’m just so amazed by this site-everyone is so helpful and forthcoming with so many subjects. I’m not happy with the reason any of us are here but since we don’t have a choice, we’re lucky to be here together. Blessings to all! 💗