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Palliative care and intervential radiologist

Shelby4now profile image
13 Replies

Good morning to All:

I have been reading all of your posts nightly. There has been so many changes with all of you lately.

I will try to fill you in. I am now in palliative care . I didn't really understand what this entailed. There is a group of doctors pharmacists nurses social workers etc that prepare and monitor you spiritually, physically, medically and emotionally. I won't be entering until the time is right . Could be months but all the paper work etc is completed. Enough said on that. Went to my MRI today and met with a intervential radiologist after the test. This was a first for me. We discussed options and he would like to try kryloplasty (sp) again . This will be the second time . My last one was March 17th 2017.......he is not sure if this will be successful but may relieve some of the pain. Changed pain meds from hydro-morpho to meth and the transition has been difficult but doable. saw pictures of my MRI for the first time on my spine and I have had a least 15+ mri's and 10+ pep scans . There was a lot of dark (black) spots along with shrinkage in height and demention throughout the entire spin. Was not expecting that. When the radiologist was looking at my back he said what was that...........?????? I told him they burnt me with the radiation I have a black and brown square on my back located between l1 and l4 The size is 2 to 3 inches long and 5 inches in height. Has anyone have that happen to them. Sorry for being so long winded please take care of yourself be safe shelby

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Shelby4now
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13 Replies
Joannaaaa profile image
Joannaaaa

Hi Shelby, I hope your change in pain medication helps and sending good wishes to you x

Red71 profile image
Red71

I’m sorry you are struggling with pain. They have added a small amount of cortisone to my pain med regimen (Fentanyl plus Dilaudid for breakthrough pain) and it’s helping a great deal. I am much more active. I’m not using much Dilaudid now that I’m on the cortisone.

Are you entering palliative care because you are not taking any more medication other than pain meds? It is a decision all of us will probably have to make at some point. I told my friend that I’m not afraid of dying but I am afraid of living miserably. In Oregon we have Death with dignity, the ability to end your life when it becomes unbearable. Whether I will do it is questionable, but I would like the option. Whatever your decision, we will support you! Hugs, Elaine

MyMiracle13 profile image
MyMiracle13

You are always in my prayers Shelby. I hope whatever the interventional radiologist does will lessen your pain. Only God knows when our time comes. In the meantime, maybe a new treatment might come along.

Bettybuckets profile image
Bettybuckets

Hi Shelby, I was very thankful for your post. Smart to get into palliative care early. I did that early for my dad and then they sent people to play games with him snd distract him. I loved seeing him still make friends in that new chapter. So thanks for the reminder for myself to get planning for that. Also I have not had radiation yet.... and also have L1 Tumor. Your burn sounds awful. How did that go so wrong? And is there anything you would do differently such as wait to radiate longer until in great pain? Or do they recommend doing earlier before bones break?

MaryCos profile image
MaryCos

Hi Shelby! Not sure where you are with treatment, but... palliative care and hospice are two different things. (Or can be.) I am doing great on my treatment but just asked my oncologist about whether my provider (Kaiser) even has a palliative care unit. They don't. (One more reason I will be switching my care to Johns Hopkins as soon as my insurance is up for renewal in November.) Anyway, I asked about it for help with pain (much of which existed pre-cancer) and other ancillary supports. In my opinion, everyone with MBC should be hooked into a palliative care team from the start. But that is just me.

Cos

xoxo

kearnan profile image
kearnan in reply to MaryCos

I agree. It has nothing to do (at least in NY) with being closer to death or anything. It just is a way for a pain doctor to manage your pain better.

MaryCos profile image
MaryCos in reply to kearnan

Yup. To manage pain and also the emotional/spiritual side of this journey. Helps to have a Social Worker plugged in too, for resources. (Says this Social Worker!) I think they should use the word "supportive" care rather than palliative. I freaked out when I first heard my oncologist mention palliative. Most people mistakenly equate that with end of life and no more treatment options.

kearnan profile image
kearnan in reply to MaryCos

Apparently that is what it used to be. Now, they tell me most cancer centers suggest palliative care earlier during treatment. I had a social worker from day one and that woman had been there for like 35 years and I would not have emotionally made it through without her bc I have no family and no friends that live in Brooklyn so I always went by myself. She was amazing. Covid then hit and I didnt go to center for almost five months before they let stage iv people back and then I noticed that the door to where the social workers were and the ladies that give out the free bras and wigs was always closed so because of Covid I decided not to go in there. This visit I had decided I was going to call her to see if she would be around bc I wanted to stop by and say hello and I found out she retired two months earlier. I cried like a baby. I never even got to thank her and I am devastated because she was my "go to" person. She knew it all, had connections, I cried. So now, they only have the one young social worker and have not replaced Nella yet but I am still so upset. She was just so good and helpful through the financial issues and other things. I cannot believe she is gone. She was a godsend.

MaryCos profile image
MaryCos in reply to kearnan

I am so sorry you didn't get to say goodbye. Maybe you can try to find her to bring some closure to that. She sounds like such a gift to your life! xo

PS: All amazing Social Workers start out as youngsters that need to learn and grow. Someday, those newbies will be someone else's Nella.

kearnan profile image
kearnan in reply to MaryCos

True. She had been doing it for 35 years. She won many awards. Her office was always a mess yet she knew exactly where everything was. She was a big tough Russian woman and at first she scared me, but that was just her personality. I found her address online and am thinking of sending her a card with a gift card.

MaryCos profile image
MaryCos in reply to kearnan

Sounds like a few Social Workers I have known during my lifetime! I hope you will contact her. I think it is important to tell people what they mean/meant to us while we can... cancer or not.

kearnan profile image
kearnan

I have been in palliative care now for over a year. Metatastic breast cancer in lungs and spine. ER/PR+, Her2a negative. Basically, in NY palliative care is just when it was time for heavier meds than what my onco could or would prescribe. It came with a psychiatrist (male) but he asked me like three times if I wanted to hurt myself and he seemed disappointed that I did not. He kept asking me and I said why would I want to hurt myself when I have stage iv breast cancer to do that job. I said this will not work for me. Then met with a nutrionist specialist that wanted me to keep a food diary and I was not interested in that either.

So basically where I go palliative care just means that now I have a pain doctor that is allowed to write me percocets (10/325 mg.), 120 per month. So to me all it means is that basically she writes me stronger meds. She also prescribes me gabapentin for the tumor that occasionally hurts that is still in my breast. She worked in hospice for years and is now in cancer center as a pain doctor.

They realized it was better to get ahead of the pain thus my onco referred me to the pain department. Doesn't mean much else. Not that it means I am getting worse but the pain from the 800 mg. of ibruprofen my onco was writing for me just was not working. So far, so good.

stardust1965 profile image
stardust1965

Hi Shelby

Good to see you here and to know you are getting the care you need. But to have a radiation burn on top of everything else... You are in the best place to get help with the pain and I hope you have some relief soon.

Sending you a gentle virtual hug. Vicki 🤗

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