Stage IV NED crew : lets support each other
Comments
-
adymaria,
I have been NED for about five years. I made some changes to my diet - less sugar and less alcohol, but they were changes that probably needed to be made anyway. I still have alcohol in moderation (just got back from a wedding in Oregon...at a winery... definitely drank there!) and I do enjoy desserts now and then, but only if they are REALLY good and I really want them. I don't drink soda but never have. I don't eat much meat. I do eat lots of pasta, fruit, veggies, dairy (yogurt, cheese.... I can't live without cheese). I take supplements; turkey tail mushroom, Vitamin B6 and 12, turmeric, Vitamin C, fish oil. I exercise as much as I did before (definitely had a few down years, don't get me wrong. Several months where I couldn't walk to the mailbox) and I run, hike, ski, mountain bike, etc. This is a very long winded answer to your question. Like others, I think you'll know if you need to clean your diet up some but don't stress about it, and no matter what happens don't second guess yourself!
Exbrngrl; I think when I first "met" you your daughter was pregnant with her first child, and now you have TWO beautiful grandchildren in your picture.....so happy for you.
I'm definitely a lurker on this thread. I'm always afraid if I contribute I am going to "jinx" myself, but I will try to participate more!
XO
Andi
0 -
exbrbnxgrl, congrats on TWO! Andi, happy dancing on about FIVE!
Adymaria, while on chemo I lived on ice cream, cottage cheese and white bread. My mouth was a mess so this was all I could eat. It didn't kill me. But I did try to compensate once my mouth recovered. I wish there were a magic formula, but we are all so different. I did try to cut back on sugar and refined carbs as well as alcohol, and increase fiber through tons of fruit and vegetables. I concentrated on getting lots of exercise as this seemed to be something you couldn't get wrong and allowed me more leeway on the diet front.
0 -
Thank you andi67 and heidihill! I actually have 3 grandchildren now! Baby Ellie is 7 months old, her brother Miles and is 2 1/2 and their cousin Frankie is 6. They are truly the lights of my life.
0 -
Awww, so cute
0 -
Hi guys
The recent stories of NED are so great to read. In terms of diet and exercise I am somewhere in between. I do drink but I limit the amount. I'm not giving up alcohol all together. I should work harder to cut down on sugar, but again I'm not prepared to cut it out altogether. Salad, fruit and veg in moderate amounts, but there is room for improvement certainly. Work interferes with my desire to exercise. I have good spells, then weeks where I'm rubbish.
The guilt about diet and exercise really affects me. However, if I was super strict, I would be more miserable. I became NED in April 2018having had 4 Taxotere with Perjeta,Herceptin and Letrozole on- going. I believe i have just been lucky to respond well to the drugs and that the lifestyle things are important, but not the reason for my response.,
Just my thoughts. Andi- great to see another Her 2 lady ( and Er positive) doing well.
Exbrxngwhat a beautiful baby!
Love to all
Liz x
0 -
Popping in to comment to AdyMaria about diet- breast cancer is much more interested in estrogen than sugar, in terms of what drives its growth. If you are taking a PI3K inhibitor, it should be very helpful to restrict sugar, and we all get way more sugar than we should so its good to cut back, but you are not doing anything special for the cancer by restricting sugar, unless you are on PI3K inhibitors, and fasting may help chemo, but if the cancer is still sensitive to anti-hormonals, its a lot more excited by estrogens, even plant phytoestrogens, than sugars. No need to beat yourself up about the diet, althiugh its always still good to reduce sugar in general. Not that I do any good job at that..
0 -
I was diagnosed with TNBC a year ago. At first I was staged at 2b. Had to have a PET scan prior to the start of treatment. Found out it was stage 4 with two very small mets in my pelvic bone. Mentally I lost my ability to function for a few months and had a lot of panic attacks and started meds for that and counseling last November. I also started on Gemzar and Carboplatin on December 1st, 2017. I had another PetScan at the beginning of February. I was NED and still remain so.
My onc actually referred to to as complete remission though after reading some of the boards here, I prefer NED. I was thrilled at the time....but that feeling didn't last long. However, mentally I did stabilize and felt much safer and like maybe I might live a longer time that I though with this. Mostly I'm just always worried about it coming back and not having the opportunity to raise my son.
Ive been NED now for almost ten months. Last week I was taken off chemo to have breast surgery to remove anything left of the tumor, remove all lymph nodes that were originally infected with cancer (4 level 1 nodes, 1 sub-clavical node) and radiation on the two bone mets to ensure that there isn't anything left of the cancer. I've been told by both my onc and surgeon that this is basically unchartered territory and they don't know if these procedures will give me months, years, or decades. They are hoping for decades. So am I. I have decided that even if they don't work, I have to at least try to gain as much time as I can.
The issue I'm having now is I'm really scared and having panic attacks similar to when I was first diagnosed. This started with my full support of my Onc's plans to help me. As much as I don't like chemo, my quality of life is decent and I continue to work full time, spend time with my husband and family, and raise my son. I have learned to take it one day at a time and enjoy something about every day because no one is promised tomorrow. However, Chemo has become my lifeline and I feel safer on it and I an wondering if anyone has any advice on staying calm and hoping for the best when treatment changes.
0 -
Hi Blueyes - Sorry to hear about all that you've been through in the past year. I too am curious to hear people's advice about staying calm when treatment changes. That being said, I have a few things that maybe will help to think about.
One is that being diagnosed de novo is associated with being a good prognostic indicator. So, it sounds like you have that on your side. Going into "complete remission" and being "NED" after a stage 4 diagnosis are also very good indicators for prognosis. Maybe focusing on the positives of that will help. Yay for being NED for 10 months!
It sounds like your first NED scan was in February, and you have continued with GemCarbo since then? My understanding is that your NED "status" begins when you have an NED scan followed by another NED scan 3 months later. Standard of care is then to continue with the same treatment for another 3 months and then stop treatment if you are still NED at that time. Of course, for TNBC stage 4 that can be scary! I believe the statistics and studies support discontinuing treatment after being NED for that long. Plus, coming off chemo means that your immune system can strengthen and your body can be in a more optimal position to right the cancer itself (without chemo). I think it's a great sign that your care team is going to move forward with surgery and radiation.
I can relate to how you feel. Mentally it can feel really helpful to have chemo when you know it's been working so well for you. While our cancer stories are different, there are some similarities. I was diagnosed Dec 2016 stage 3 ER/PR+/Her2-, then re-diagnosed January of this year with TNBC liver mets. I started GemCarbo in February and by April my PET scan was NED. My July scan was also NED. I have a scan next week, and then plan is for me to stop chemo if it is NED. I am both excited and nervous about it too. My understanding is that you can restart GemCarbo in the future too, if needed. And since your quality of life is decent, it's good to know that you have an option out there that works well and is good for your QoL.
Wishing you all the best! I'm also curious to hear what advice others have to offer too.
0 -
blueeyes, sometimes doctors see it fit to try a multimodal approach. I was in this boat. It may help to think of chemo as part of the package and that the other tools are just as important. Radiation is mostly a local treatment but it can also be a systemic one when it activates an abscopal response -- targeting tumors or cancer cells in different sites in the body.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828732/
I also have changed anti-hormonal drugs a couple of times and thought of it as a strategy to prevent resistance from developing although my meds were switched mainly because of side effects.
0 -
Hi All - just chiming in on the "diet" topic. Personally I didn't eat horribly to begin with. Nor did I drink a crazy amount. I am VERY active with exercise, work, etc. I think being as physical as possible is the biggest factor for me personally. I could copy and paste exbxgirl's comments about not wanting to feel guilty about everything I put in my mouth! After all, my side-job is bartending in a brewery!
I'm now coming up on four years of completing my chemo/surgery/radiation and have been on the same regiment indicated in my dx the whole time. They aren't sending me for pets anymore unless my blood work sounds an alarm. I even had my port removed - not because I asked, but because it got clogged and wasn't working for my zometa infusion anymore!
0 -
Hi all - Just wanted to share some great news. I just found out that my PET/CT showed NED again! I had clear scans in April and July, after starting GemCarbo in February for TNBC liver mets. The plan now is to stop chemo - exciting and petrifying at the same time!
Wanted to share the good news
Also, curious if anyone else is TNBC NED and off chemo? Would love to hear your stories! 0 -
Hi Thrivingmama,
Congratulations, that's terrific news!
I'm triple negative too, just found out that I'm NED yesterday! One tiny spot in my brain that we are monitoring but they think it might just be scaring from my surgery. We are reducing my chemo dose for now. I have wondered what would happen after a few clear scans, whether we would stop chemo. I could imagine I would be anxious to stop chemo too.
Good luck and hope every future scan is clear too
Ally
0 -
AllyBee - Great news!! You must feel so relieved and happy. I was told that I should continue the treatment that got me to NED for 3 months beyond officially being in remission, then rescan. If that scan is clear, then go off chemo. That's how I got to where I am now. Just had my last chemo today, for good measure I guess!
Are you on GemCarbo?
0 -
Thank you thrivingmama, I'm very happy but also scared to get too ahead of myself in case it's short lived. I think that might be the plan for me too, I'll probably do another 3 cycles and rescan.
Yes i'm on GemCarbo.
0 -
AllyBee - I say celebrate what you know today - NED! A great thing. I seem to hear of quite a few women who are TNBC going NED on GemCarbo.
0 -
- Hi , I have MBC,diagnosed in August 2017 after almost emergency back surgery,during presurgery screennind found some spots in spine,brain and pelvic bones,cancer was originated from breast cancer 2014.In 2014 after bilateral mastectomy ,it was stage 2B, refused to to have any chemo was agreed to start Femara,then switched to anastrasol,terrible side effects for 3 years, keep working as RN in very busy city hospital ,worked very hard,a lot of stress and extra hours,burned self and even having some back pain not stop me to slow down until one day my supervisor sent me to ER because she saw how I was struggling with pain.Terrible news in ER shocked me, I had tumor compressed my spinal cord,dr was shocked even more then me,she put all her sources,transferred to special unit for surgery.I had surgery in 2 days,did good recovery,had radiation after,some side effects but not so bad.I quit my job,because they told me that I have a high risk for bone fractures .Stay at home in beginning was OK but now I feel lonely,and depressed that I not able to do more,mostly more physical,I am not the same strong as I was before my back surgery and it frustrate me.I have a lot staff in my mind, a lot of questions and a lot of thoughts and would like to share them with MBC community, to meet new friends and supporters. Thank you for giving me opportunity to join your group.
0 -
Thank you thrivingmama. I think I will try to live the next three months like I don't have cancer, because as far as I know I don't
0 -
Nugget1, sorry you have this dx. From your post you have bone mets and brain mets? What treatment are you taking? Are you NED? I'm not (yet) but I like reading this thread for inspiration.
This MBC can be depressing for sure but I hope you tell your oncologist about it. I was never one to go a lot of places, but now that I'm home almost all the time except for medical appointments, I do miss being able to go out whenever I feel like it. I love to read so I am enjoying that, and I try to set myself a few tasks each day. It's nice to check them off the list, even if they are small ones like watering the plants. I was also formerly strong and constantly doing some kind of work, including hard physical work in the yard and indoors too. I try to do some mild exercise every day and sometimes more If I feel stronger. It helps if I just try not to remember how much more I used to be able to do. If you are comfortable with it, add your dx and treatment details. The folks here have so much knowledge and will probably have good tips for you. You might look at the bone mets thread and any others that interest you also.
0 -
AllyBee - Exactly!!
0 -
- Thank you very much for support and ideas,I just recently had my bones scan and CT and so far everything looked almost the same as previous 3 month testing,so far no new radiation ,thanks again.But my oncologist suggested to start Prolia to improve my bones condition and after spending hours of reading a lot of articles about this medication I got confused and not totally ready for it, is it really working ?so I have Question for MBC community about this medication or any suggestions to improve bones condition . I know that I have osteoporosis and metastasis in spine and pelvic bones , but so much controversy about meds for this condition. Thank you
0 -
Nugget1. I have the Prolia injection every 6 months. It has stabilized my osteoporosis and have no problems with the drug.
0 -
Congrats thrivingmama and allybee!
Just saw this from a few years back. According to this article, the median survival for NED patients was 102 months from the time of attaining NED status
I am now on 128 months and still active.
Nugget, Prolia will help prevent bone fractures. I took another type of drug for the bones (Zometa) but it is an infusion which is not as convenient as an injection. It did make my bones stronger in combination with exercise as evidenced by DEXA scans. Prolia could do the same for you.
0 -
Thank you Heidihill. 102 months is very encouraging, much better prognosis than everything else I've come across
0 -
Hi. Two years ago Oct 2016, diagnosed with Stage IV with widespread mets to liver, single met to T12 and tumor cells clogging up my lung arterioles.
My scans today (bone and CT scan with contrast) show no evidence of active disease..NEAD. I know these cancer cells are asleep or as my MO says, the liver lesions are "deadish".
So onward I go. Side effects suck, but better to be 60% of who you once were, than 0%.
0 -
Hi all,
Thank you for the responses regarding diet, however I'm still having doubts about sugar. When I was first diagnosed, I told my breast surgeon that I quit eating sugar since I was afraid it contributes to cancer growth. Her response was "it's funny you say that because PET scans use a radioactive sugar to detect tumors". I always thought that was a really good point. Now that I've started eating sugar again, I'm noticing pain in my breast where my tumor is (tumor was never removed due to size, trying to shrink it first). So now I'm wondering is that pain from the sugar feeding the cancer and causing the tumor to grow? Or is the pain a sign that my treatment (ibrance/letrozole) is working and killing the cancer cells? To be honest, I don't remember if I felt the same pain when I quit sugar. Maybe I'm just noticing it more now because I'm paranoid about eating sugar again. Would greatly appreciate hearing everyone's thoughts.
0 -
I don’t believe that sugar feeds cancer. I eat sugar every day, and I have been Ned for 7 1/2 years and on no treatment for 3 1/2 years. 8 years ago, when I was first diagnosed with liver mets, I went on a strict diet. After about a year I started eating whatever I wanted and I continue to do well. I think how you respond to the treatments is what matters.
0 -
I agree - I have read this is a completely bogus claim. I will try to find some documentation on it.
0 -
There is tons of research out there on this. A quick search found this article Fromm MD Andersen.
0 -
Lauriesh - Wow, thanks for sharing and congratulations on 7 years NED. Good to hear that someone stage 4 can still eat sugar and be NED for 7 years. Question are you very active, excercise a lot?
LaurenH - Thank you for looking. Unfortunately there is so much contradicting information online. I see tons of articles that say sugar doesn't feed cancer, and other articles that say it does. But then what I always come back to is - why would they give us radioactive sugar (glucose) for PET scans if there wasn't a strong relationship between cancer and sugar.
0 -
I totally respect your opinion and have no issues with you believing that sugar feeds cancer. I’m just sharing information for the benefit of others who might read this.
It is important to consider the source of conflicting information. This one is from the Mayo Clinic and specifically addresses the PET scan connection.
https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714
0
