Choices
Comments
-
Marla,
By any chance you getting a/c Chemo?! The cytoxan (sp) gave me beyond horrible headaches for days after treatment. If you are, maybe ask for them to lower the dosage? just a thought….
Karen💕
0 -
Hi ladies!
Karen, good to see you back on the boards! I was pretty concerned about you. Please let us know what happens after your tests. I pray that it has not metastasized to your lung or brains. This is a pretty tough one for you and my heart goes out to you.
Marla, you do shine on these boards when I'm not around! Maybe I should stay off them more often LOL. Just to help you btw, when you sign into the boards you'll see your little picture of yourself up in the upper right corner. If you pick that picture it expands out and shows you bookmarks, drafts and my topics. That's usually where I pick up this board from, and that's also the place where I find out what the count is on the board (which is currently 1,265). Let me know if you have trouble with this.
Claoh, I'm glad to see that you got to answers you needed. It really does help to be able to see what kind of decisions are available to you, I'm sure. I was going to ask you a favor to see if you could post a hyperlink to that list of symptoms? Like Marla, I am forever looking for information and I think that would be a very good one for this board.
So I've made it through all my bazilian doctor appointments for the week. Last one was this morning and then I spent the rest of the day setting up more appointments LOL. I will get my second PET scan and brain MRI about the middle of next month, with a follow-up to the brain surgeon and my oncologist. I'm curious to see if there are any changes from the chemo I've been taking. Which reminds me Karen, I didn't know the immunotherapies can shrink tumors. I learn something new everyday just listening to all y'all ladies. :-)
Something I have not been able to research at all is an article my daughter sent me on using light therapy for tnbc. The place is in Tijuana. Obviously it's not recognized by the United States because it's not FDA approved, but sometimes I wonder if I shouldn't keep that in my back pocket if I get worse. Here's the link, but I CAUTION you that this could be just some scam. Like I said I haven't had time to research. She said there was a model of this in Europe too. We'll see. If you do decide to read this please proceed with CAUTION.
https://www.oasisofhope.com/cancer-treatment-types/breast-cancer/
I'm actually a little uncomfortable about even posting this. The last thing we need on this board is misinformation.
So I started looking at advanced directives and power of attorney. Just getting my toes wet right now girls. But I would rather be prepared then unprepared in case things happen to go south. I believe I have lots of time to figure this out. But that's just me. Like I said, I'll know more when I get the results back from the Pet Scan and the MRI on the brain.
Btw, my oncologist wants to speak with me about my questions on mastectomies when she sees me after my pet scan. I hope I can clearly get the message across that this is not personal decisions I'm talking about. I would like to know what the statistics are for recurrence in the chest wall, along with other areas. But since I'm talking mastectomy I am specifically looking at the pec muscles. As you all know, I have already metastasized to the lymph nodes that are above my clavicle so then my question would be where does it go from here? I really do want to know what the point of the damage is by removing the breasts only to see it recur behind them. I thought it was a simple question but apparently everyone is very cautious about what they say to me about it. That's why I look to you all for your opinions. I assume I'm going to have to make up my mind pretty soon, I'm just not ready yet. Like you said Claoh, I'll know what it is when I find peace. And yes I like the name Claoh. :) I pronounced it Clay-oh (Marla).
Okay enough of the serious news. You all are looking and sounding really GOOD! I really love the fact that you gals are keeping these boards going! You are all encouragers, you are all very strong. Karen I hope to hear more from you. I'm not taking the same chemo you are so I apologize but I can't relate to that particular chemo. Marla, what about you? Do you know which chemos you were taking?
Talk to you later. Be blessed. Hope you all have a good night.
Haha. Guess it would help if I actually posted this lol.
0 -
Morning ladies!
So I had written out one of my usual long blog but had to step away so I saved it in drafts. Then I posted it but I saw that I had a copy of it still in drafts. I deleted that one and it deleted my post to you gals also LOL. Guess I need to work on that one to figure out how it works. :-)
Karen, I'm not using the same chemo drugs you are so I really can't relate to what you are going through with that particular chemo. However asking them to lower the dosage worked for me when I asked my oncologist for help. (She actually suggested it). She dropped one of the chemo drugs 20% and it made things a lot better for me. I was just getting a little bit of a headache but my lethargy was off the wall before that.
Cindy, I am so glad that things worked out for you! It sounds like you got a lot of answers from hospice. Like you I thought hospice was end of the trail also so I was surprised to see they were doing that. I bet it was a real shocker when she first mentioned it though. I love the way you control your situation AKA unmarked car, name and address only. I did that once in my life when I had to have an ambulance pick me up. I told them they couldn't have their lights on and they had to drive up as if they're just visiting LOL. Too embarrassing and uncomfortable when they come up with signs on their car or lights flashing or whatever. I think I'm like you, I like a quiet life without nosy neighbors. :-)
Marla, thank you for expanding on hospice. I learned so much from y'all when I just keep quiet and read LOL. I wanted to let you know that to get to the bookmarks after you sign in, pick the icon of your picture in the upper right corner. That will expand out and you will see "bookmarks", "drafts" and "my topics". Pick the bookmarks and "Choices" will come up. Note that below the title is a count for this blog.
I wanted to thank you guys for keeping the boards going while I was off. I managed to catch glimpses of what was going on on the boards. Y'all are doing so great and I'm grateful to be able to see you on this blog. It's very encouraging to me and I just wanted you all to know that I appreciate it.
Okay, so here's a new topic we haven't discussed yet lol. Does anyone have lymphedema besides me? As you know I got the sleeves. Wednesday I had a tech coming to my house to show me various lymphedema pumps that are available for my arm and chest. We started with the arm sleeve but didn't really get much of the lymphedema down. Then we tried the vest which was a full upper body vest with a sleeve. That definitely made a difference so it looks like I'll be getting the more expensive one LOL. I'm glad I have insurance! Geez!
Cindy, I was going to ask you if you could please post the link for those symptoms on this site? Like Marla I like to learn about what I'm dealing with and it sounds like you found a really good site.
Since we're talking about names, mine of course is Pat although I go under Sadiej which was actually the name of my Border Collie (Sadie Jane). So I guess you could say I named myself after a dog LOL. She has long since passed on but I remember her through the namesake.
Back to the lymphedema. Does anyone know about this? I saw somewhere where once you get it you can't get rid of it but I don't know that for a fact. All I know is that fluid builds up when your lymph nodes can't filter and process it. But I would think that if you got rid of the cancer the lymph nodes would settle down, or maybe not if the lymph nodes are removed also? This is one topic that I definitely need to understand and really have no clue LOL.
Okay ladies, I'm sure I'm forgetting something but this is it for me for now. Y'all be blessed and have a great day! Hugs
Pat
0 -
Pat the bookmark worked like a charm! Thanks for the great directions! On the lymphedema, my son's daughter-in-law's mother has lymphedema but in her legs and feet. I know that she has gone to PT and a Lymphedema specialist but can not completely get rid of it. She had A.C, no radiation and I believe a double mastectomy in 2011. I can ask her what she does and knows about it.
I will post about that subject when I have information 😅
I hope you are doing well this morning.!
0 -
Glad to hear from you Sadie. You did pronounce claoh is I thought it would sound : ) It stands for my initials and Ohio, where I first lived when I made it up for the computer. That was 22 years ago!! From there we moved to PA!! between Harrisburg and Hershey. We moved here 4 years ago.
I'll have to look back for the actual site about where the cancer could spread. I typed up the info I wanted and have that.
Later today at noon I have a virtual call with a cannabis dispensary to get a medical marijuana card. Then at 3:00 today my new hospice nurse is coming by to introduce herself. I will ask her about lymphedema. I have not had it, but wonder if a pill my palliative doctor was thinking of prescribing would help prevent it? I declined at that time, this past Wednesday, and went with the lidocaine patch at night. Have worn it two nights. Not sure if its made a great difference, but my tingling was very slight. That is main reason I declined the pill. Trying to stay off drugs as long as possible - just enough to keep me comfortable.
0 -
0
-
Pat ! I like to use your name too
Are you in Cleveland, where all of the storms are?
I know that Cindy, Claoh is in Florida. Two funny that you posted it twice, but we all have those moments. Thanks for the information about the bookmarks. I will try it.
Had my second chemo yesterday, splitting headache all night. The chemo nurse, Amber said it was one of the side effects of Zofran and the oncologist gives it pre-infusion at a low dose. Hummm Zofran is for nausea, but the Compazine works much better. That is an oral med.
0 -
Good morning, Nice to see you here and yes I am getting a/c and cytoxin. Have you tried an ice cap for migraine headaches? I got mine from Amazon and it works pretty well. If you don't have it which is fine, an ice pack to the neck and another one across your forehead or top of your head. Ice works wonders. lay down in a dark quiet room and rest. Hope that this helps. I Had my second a/c treatment yesterday and by the afternoon, a headache was coming on. I was also told that Zofran, usually given pre-infusion for nausea has side effects of headaches and diarrhea. You might ask about that. I take oral Compazine which works much better! Give it a try and let me know how it works!🤗
0 -
Had a Case Manager Nurse come to the house this afternoon from Hospice and again am blown away with their services. A Case Manager will come to the house every 7 to 10 days to take vitals and watch for any progression that needs to be addressed.
I did ask about lymphedema, and she said I have a slight case of it. I looked surprised and said "how can you tell?" She commented my left arm was a bit larger than right, and my husband agreed. I was surprised, they don't look any different to me. Talked about a sleeve but she said not at this point, but if I did want one to get a diabetic sock, cut off the toes and use that - less pressure. She also recommended that when watching tv or when convenient I raise my left arm over my head to get the blood flow going. I did not think to ask if it was reversible, but will try to ask on next visit.
Another Case Manager Nurse also called tonight, while we were gone, to set up next appointment. I am feeling very pampered.
0 -
Oh, I don't think i'm pursuing the medical marijuana care right now. You have to have two doctors approve. I called five doctors listed in my area and two telephone numbers were disconnected, and two telephone calls went to an emergency room with no contact with these people. The one that answered said she now lived in Texas, it was very hard to get medical marijuana doctors mid state and I'd probably need to go to either coast.
Then the cost can be between $200 and $400 to get approval.
The nurse said today their hospice does not condone it as it can mess up your other meds.
That's why I think I'll pass for now. Almost sounds like a scam, even though there are cannabis dispensaries in our city. We stopped at one and they said I needed the medical card but not allowed to recommend a doctor. Viscous circle in my estimation.
0 -
Good morning ladies!
Claoh (I like that name) you absolutely deserve to be pampered! Curious as to whether or not they would come sooner than 7 to 10 days as you progress. What a runaround with medical marijuana. I checked the Florida State OMMU and I did find a list of qualified doctors, but I can see your point about the prohibitive cost of getting a card and about not getting clarity on whether or not you can take this. I'm curious as to why the second person said it would interfere with your meds if you're not actually ingesting them. Anyway, just in case you need it, here's the link:
https://knowthefactsmmj.com/physicians/list/
I want to thank both of you for pursuing my questions on lymphedema. If anybody feels pampered, it's me the way y'all help me out! Claoh that makes sense about a diabetic sock (which I assume is just a compression sock that is about 30 hg). I know I had to have my whole arm and my hand inside the sleeve so that it didn't backwash into my hand. I can see where you can take a sock like that and cut the toes out and also give yourself a thumb hole so you can still use your fingers. But it doesn't sound like yours is too bad yet and that's a good thing. My arm is about twice the size of my other arm. I just could never get myself to sit there with my arm up over my head LOL. I'm too busy using my hands! :-)
Marla how are you feeling this morning? I can't even imagine having a headache like what you and Karen have after chemo. I'm curious about your ice cap also. Never heard of one until these boards. Is Compazine an otc? I I wondered in case my headaches ever get that bad but of course I would ask my oncologist first before I used it. It doesn't sound like I'm taking any of the chemo drugs that you gals are. I wonder if that's because mine is a lot further along than yours and Karen's. Plus because of the previous chemo-induced damage to my body they probably gave me a lighter version of what you two use. Not that it doesn't work but of course I won't know that until my pet scan next month. I'm already getting a little stressed about the results of pet scan and the brain MRI. I'm really hoping that they see an improvement without further metastases.
Marla I was not in Cleveland when the storms came through. I was safely in my house and all we really got was close lightning and a lot of rain. My poor cats were trying to find anywhere to hide LOL. But one strike even made me jump when it hit about a hundred yards from my house. We did have an experience with severe storms on the way up to Cleveland a few weeks ago. We were coming down the four lane when we noticed the sign beside the road with big letters that said "tornado warning". Okay we thought, must be because we're so close to Lake Erie right now and we just need to keep moving to get away from the lake. That wasn't a good assumption either lol. We ended up in a debris field with blinding rain. We pulled over to the rest area until it passed and after that we were fine. Everybody was inside the rest area soaking wet and standing around watching the storm. Not me haha, I figure if I'm going to be there I'm going to make use of the bathroom! It didn't last very long but it still makes me a little bit gun shy when I see combined travel and weather alerts in the same sentence. :-)
Karen, it's good to see you on these boards although this is a little belated. Sometimes time passes so fast that you barely catch your breath before it's time for another chemo treatment. I can't wait to hear what your test results are and pray that the answers are good. It still just breaks my heart to hear what happened to you. I think it makes us all reflect on how nasty this stuff can be.
Okay ladies, that's it for my long blog today. Y'all be blessed and have a great day! Hugs
0 -
Hi again ladies,
As you know I have been researching the healthcare power of attorney and living wills. For me, this is just to make sure that I have my ducks in a row in case something goes south on me. For anyone interested in this information here is the link:
https://www.merckmanuals.com/home/fundamentals/legal-and-ethical-issues/advance-directives
Also, this seems like a good article explaining hospice care:
https://www.merckmanuals.com/home/fundamentals/death-and-dying/hospice-care?query=palliative%20therapy
Pat
0 -
Thanks for the good info Pat. At my first palliative dr. appointment we filled out both the Health care Surrogate Advance Directive and the Living Will Advance Directive as well as the DNR form. I will look up the link about the cannibis affecting pain meds.
The call from the Nurse last night was because she was not aware I was already seen by another nurse. That is my only "complaint" about hospice. They call to see if you can have an appointment "that day". I would prefer to know when the next visit would be so I don't put anything on my calendar for that date. I did give all my travel dates to the nurse I saw yesterday, so hopefully these will be passed down the line to the others.
Hope you all are having a comfortable day.
0 -
Hello ladies, It is I again lolol
Compazine is an oral prescription for nausea to clarify that note. I had my second chemo last Thursday and it has been a bit tougher. Check out Amazon for ice caps for migraine headaches. It works pretty well for the screaming headaches after chemo. I have been sleeping a bit more than usual, but I am okay. Nausea seems to be constant, relieved with Compazine somewhat and food. Trying to keep all of out spirits up! Not to much to say now. Glad that you are all doing well at the moment. Will write more tomorrow! Take care and Positive Mental Attitude goes a long way and keep drinking you water!!
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.9K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 398 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 794 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 63 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 540 Sarcoma
- 734 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards