Scared and really want input.

Anonymous

Scared and really want input.

NicoleRod

Well today I got back my onco results they were very bad. I am 50 years old. My score was a 49. I found out I am still ER+ and HER2- but I am no longer PR+ I am now PR-. On top of that and hearing that I would now need chemo for 16 weeks once every 2 weeks and it will be AC first...and Taxol next. BUT....now they have to do a CT of my chest, abdomen and bone scan of my hips tomorrow because I have been having pain in my hips for about 5 months or so. This cancer was my 2nd. 1st was back in 2014 inSITU stage 0 lumpectomy radiation. This time GRADE 3 Stage 1 same breast double mastectomy no reconstruction.

So I am here to ask if anyone is like me in the sense that their bodies enzymes does not break down meds well. Example... I cannot even take a tylenol with codeen...or a Vicodin because it makes me completely nausea and extremely high like double what the average person would feel. I can't even have caffeinated coffee I feel a buzz. So with that said how the heck is my body going to filter out or process the chemo? I am terrified that I will not be able to handle it. Before anyone thinks I am wussy (ha ha) I have a high tolerance for pain...pain is not the issue for me...I did the MX and I did a septum surgery nose broke with no pain killers not even tylenol till day 3. I am extremely worried though about my body not being able to handle it. I have had Lyme Disease in the past as well but it's in remission for the most part unless I add something it "doesn't like".... yea...also worried about chemo with that. I do only drink plain water and plain seltzer water and lots of it probably 40 oz a day because I have bladder issues (use to have a recurrent UTI) So I definitely drink enough.

Today was awful for me and tomorrow and the next will be even worse waiting for the results to make sure nothing is in my bones I cried most of the day so If anyone has any advice or anything that might be helpful I would be so grateful.

Thanks,

Nicole

AliceBastable

I don't have any advice or relatable experience, but I am sending you a huge (but gentle) hug.

Lily55

NicoleRod I am recently diagnosed with cancer recurrence in the bones and I understand it is one of the better recurrences to have in terms of treatment options........although none of them are good of course.

I know where you are right now, the waiting to find out is the most agonising....there is a section on Stage IV saying "worried you might have mets but not diagnosed yet"....I wonder if that might be helpful for you right now?

Margot62

Nicole,

I am so very sorry to hear that you’ve had a recurrence. You must be so afraid right now, and if so, that’s okay! Get over the shock for a few days and then get back on your horse and soldier on!

I, too, am like you, as you know, with an extreme sensitivity to nearly everything. If I ever need chemo, I’ve thought of talking to my oncologist about considering giving me a child’s dose. I don’t expect her to cooperate because there’s probably no studies on an adult receiving a lower dose, but at least it will open the conversation about your sensitivity. Explain that you can’t even drink coffee because the caffeine stays in your body without the caffeine getting broken down. Science knows so little about this kind of sensitivity. I’ve never found much research on it, but it appears to be metabolic, and metabolics are something science knows little about. It’s very complicated. Research the MTHFR gene variation. A lot of people with this variation are very sensitive to things. You can get a genetic test to see if you have it, but there are very few doctors who even know what it is. But it could have been your Lyme, too. That makes sense to me

Most importantly, come up with a plan to help you cope on the road ahead. Have you looked into complimentary therapies? I’ve read several articles on CBD oil, which is oil extracted from the Hemp plant. There was a newspaper article today about a woman from Oklahoma who says she was cured from Hemp at Stage Four. Others use it to help with the side effects of cancer treatments. Meditation can help, too.

And have you come up with a diet plan? Lots of veggies, no sugar... there are great books out there on good diets for cancer. While none of those things may “cure you,” they can help you feel better and give you some measure of control, no matter how small. I’d be happy to embark on a cancer plan with you. We can do it together.

Join a cancer support group! I think people with cancer need lots of support and contact. Your psychological well-being is very important.

As for me, I still haven’t decided on which option to choose. I change my mind everyday, it seems. I’m leaning towards a masectomy on the left side. Both choices—lumpectomy or masectomy—are very difficult.

I’m so sorry that you’re dealing with this again. I’m sure after radiation and surgery the first time, you thought you’d done everything you could, and it’s a shock to be back there again. Let’s pray that you have good test results in a few days. Please keep me posted. I’m here for you!

Margot

NicoleRod

Thank you lily and alice. I didn't know about this: .there is a section on Stage IV saying "worried you might have mets but not diagnosed yet"

Maybe I should have the mods move the thread there?I so appreciate all your kind words but more than that...just having the replies to read feels so good.

Thank you Margot! Wow yea I would love to have you come up with a diet plan. I work out regularly (well before the mastectomy) and I eat "relatively" healthy but yea sugar, I definitely need to cut down I don't have a lot but now but I want to make it very minimal. I also just cut out processed meats and pork..I think this was something that over the past 3 years may have helped my cancer grow. I say this because it causes inflammation and my favorite thing to eat on weekends was wine, cheese and different The salami and soppressata. Not to mention bacon but only on weekend breakfast. I have now cut out all processed meats and no pork at all. Bacon was really the only pork I would eat or once in a blue moon pulled pork. I know I had inflammation because my sinuses and post nasal drip was so bad I would practically have to live on Claritan D. One time they were so bad my doctor gave me a 7 day steroid pack and after taking that I could breath like a normal person lol thats when I knew it was inflammation. I read recently a breast cancer doctor that said he believes recurrences are triggered by inflammation in the body.

Any way please feel free to message me privately so maybe I can get started on that fairly soon.

I am about to leave for my scans. ((((hugs)))) to you all

Nicole

NicoleRod

So my test came back fine for the hips but they found 2 spots in liver and said it's suggestive of metastasis. They had 3 prior scans from me from last year and 3 years ago bc I had an anginoma>spelling group of blood vessels spot in my liver, but with that when they found it on CT they ordered and MRI to confirm. With this they are pretty certain from the way it looks it's cancer bc they are ordering a CT needle biopsy. Spent a lot of time crying...but I am numb right now. If anyone has any info on how the CT needle biopsy is done please tell me I am hearing it very painful. My doctor said they do not knock me out. I am waiting to hear when the appointment is.