Newly Diagnosed with stage 4b MMMT

Palliative care provides relief from the symptoms and physical and mental stress of a serious or life-limiting illness. Sometimes people equate palliative care with hospice, but hospice only comes into play when a patient is no longer receiving cancer treatment.

While not all treatment centers officially "name" their support services "palliative care," they often provide the same services as those formally known as palliative care.

For example, my treatment center didn't call their services for cancer patients "palliative," but they offered counseling, stress management, advice on dealing with financial issues, exercise programs suitable for patients, etc. which are typical offerings in a palliative care program.

While I was comfortable with all my doctors (gynecological oncologist, medical oncologist, radiation oncologist), there are other women here who didn't feel there was a good fit with their initial doctor and did make a doctor change. Treatment is a long process - if you don't feel comfortable with the doctor now is the time to make the change. At a minimum, I would get a second opinion.

When I had chemo, I was given a number of suggestions for avoiding mouth sores and I never had any. They were:

Avoid spicy or acid foods like: pepper, cumin, tomatoes, coffee. I took it a bit further and tried to eat mostly alkaline foods. When I couldn't eat much else, I could eat watermelon during chemo. It seemed to soothe the digestive tract. Here's a link to an alkaline vs. acid foods chart that I found very helpful: https://greenopedia.com/alkaline-acid-food-chart/

Avoid crunchy foods like toast, crackers, chips if you get mouth sores.

Rinse with baking soda after eating to neutralize anything acid that you eat. Just put 1 tsp. baking soda in 1 cup of water and swish, spit, and rinse. You don't have to use the whole cup; just what you need to rinse.

Odds are that you won't get sores, but you might feel a bit of a burning sensation in your esophagus. It's kind of like mild heartburn, but doesn't come up from your stomach like you think it would. If you get that, ask your doctor if it's ok to take something like Pepcid. That helped me, but always run anything you take OTC by your oncologist first.

I'm with CMB about maybe changing doctors. You are entitled to a proactive doctor. It's a big red flag when a doctor can't make a call wait when he's with you and makes you feel like he's written you off when you aren't hearing any fat lady singing yet. There are/were other 4B ladies here getting their cancers treated more like a chronic disease and making the most of the time that gives them. It should be your decision to make. Hopefully, you have other options to check into where you live.

Getting a port will save you so much discomfort and makes so much sense for your circumstances. You can start chemo on the same day it's put in using a local anesthetic, so you'd be safe insisting on it before your first infusion. 

Julie_123 said:

Is Palliative Care before I start chemo normal?

I have not started chemotherapy yet,  I met with obgyn oncologist on Friday, he cleared me to start chemo.  I go for my orientation on Tuesday. My doctor does not want to do a pet scan before i start chemo so he can tell if the chemo is working and by how much. I would think that I would do one before and after the chemo session. He said that my symptoms will go away if the chemo is working. He did not debulk the turmors I had, he only biopsied them and said I had little sprouts of cancer all over.  I drew a picture and asked him to show me and he could not.  I asked what to excpect if the chemo the taxol carboplatin did not work would I do another roound of chemo? His reply was if you want to. Then he got me a referal for pallitive care.

When I was asking questions and  talking to him....he was on his cell phone part of the time , I was offended...I know this guy is considered solid but don't feel comfortable with this guy. I never did., but I just assumed that I was having jitters because of the cancer, and I owed it to him to give him a chance. My brother seems to like him....

 

I don't think this guy is at all proactive. I wanted to get a central line in before I started chemo and  he waited to put the order, in now I will have started chemo at least one round, with out a central line.... I asked him about it and he said. and he said something to the effect of the nurses are good  about finding viens...I aasked about getting Valtrex to prevent mouth sores..He said people don't get mouth sores on this chemo regimate, but if you get them I will prescribe it....I want to nip the problems in the but before I start not wait for the side effects. Every thing in side me is saying get another Doctor...but what if I am wrong....

If anyone has any thoughts I would appricate them... 

 

I am very frustrated. 

Hi Julie,

To echo everyone else, I'd think about looking for another doctor.  It is inexcusable that the doc would take a cell phone call during an appointment.  You have a serious diagnosis and you need to at least trust (if not also like) your doctor.  I'm not sure where you live, but a larger cancer center may be more familar with the rare type of cancer that you have.  What part of the country are you in?  If you are ok sharing that you may get suggestions from other ladies here.  

I'm sorry you are dealing with this and your frustration is warranted.  One thing to add is that usually a medical oncologist (not the gyn-onc) will be in charge of the chemo part of treatment.  I'm not sure if that's who've you've been seeing, but if not, you might like that doctor better.  But still see about a second opinion to address the CT/PET scan and the decisions related to surgery (i.e. biopsy instead of removing more of the tumors).  There have been ladies here who did 3 cycles of chemo then had surgery, then three cycles of chemo.  I'm not sure if your doctor mentioned that as a possibility, but something else to ask if you get a second opinion.

Please keep us posted!

Anne-Marie

I had to change gyn oncologist and the whole team as I had some bad experiences with the first gyn onc. It was a bit stressful to have to do that, but you may want to do some research in your area, ask around, try to find out if there is a female gyn onc who might be a better fit. Your guy sounds like my first gyn onc---a bit dismissive, not responding to your requests very well, not on top of your wishes. Your brother likes him? well, he's not the patient.

If you like, share the state you're in (I'm in Oregon) and see if anyone can share information about resources.

Wrapping you in a hug, as I know this stress.

Deb 2

buck3456 said:

Uterine cancer

Hello, I was diagonosed with stageIVB Leiomyosarcoma in July 2021, I had a complete hysterectomy but not before it spread to the base of my lungs.  When the doctor told me she was so matter of fact and not very encouraging.  When I left her office I felt like I was going to drop dead before I reached the elavator. On the second visit, with my husband, she was a lot more encouraging. I have had my 2nd chemo treatment (Doxcil) and seem to be tolerating it well.  However, it seems after treatmeant, I am experiencing intense anxiety.  I had anxiety of course after the diagonosis but this is so intense.  Has anyone else experienced this?  Are there any natureal remedies for it?   

Welcome to the Baord, although we're sorry that you had to find your way here.

I think it's safe to say that everyone here has experienced anxiety when learning they have cancer, especially if it's a later stage like yours. I don't think there's any single way to deal with the anxiety that works for everyone.

In my case, my doctor prescribed Ativan (Lorazepam) for me to take after I had my infusions since the steroids I took during those couple of days would "rev" me up and prevent me from sleeping. I didn't take the Ativan at other times, but I'm sure the doctor would have prescribed more if I had. Other women have also taken anti-anxiety medication during this period.

My treatment center had a variety of support services including counseling and group support sessions. I'm not sure how available these services are during the COVID restrictions, but they may be available online via ZOOM, etc.

I didn't use the counseling services available to me, but I did take advantage of the exercise classes for cancer patients. Other women have found that exercise, even simple walks outside, have helped with their anxiety.

Some women have used meditation, while others have taken CBD gummies.

I was working during the first phase of my treatment and having something else to focus on besides cancer was helpful. I wasn't able to work much during my second phase of treatment and I found it hard to read books or focus on movies or television programs then. But while I'm normally not a puzzle person, I found that doing jigsaw puzzles during that time useful to give me something else to think about – but that didn't require the concentration needed to read or follow a movie plot.

You may need to try a few things to find what works for you. And realize that you may switch things up during the course of treatment.