Stage IV NED crew : lets support each other
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I totally appreciate you sharing the information. I have no idea if sugar feeds cancer or not, just tying to get a conversation going and hear everyone's thoughts/opinions about this. So wanted to throw that PET question out there to get people thinking about the connetion. I much rather hear everyone's opinions on here instead of looking online. Agree source matters! Thank you for sharing!
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adymaria, I hate to say it but I don’t exercise at all. I have a lot of neuropathy in my feet and legs which makes it painful, so I sit way too much.
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Re:Sugar/Cancer - I meant to add that I personally chose to believe information from the University-based cancer centers, recognized by the NCI, like MD Andersen, Mayo Clinic, Johns Hopkins, etc. They are all consistent on this topic. Others may chose to believe conflicting evidence from other sources. It is a completely personal choice to decide which sources of information one trusts. It is so hard to know a what to believe but this is how I personally do my research.
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My dear wife doesn't use the computer much with the exception of Amazon so here I am her husband.
My wife's case is very complex and it all started in November of 2012. She was diagnosed right off Stage 4 and, at one point, had 3 different breast cancers at once. In her right breast was a large ER/PR+, 100% estrogen, Grade 1 tumor. Inside that was an ER/PR+ 30% grade 3 tumor. In 9 of her 19 lymph nodes removed was triple negative metaplastic breast cancer. Lifetime AC and radiation got rid of that mess. Months of various estrogen blockers failed to stop the cancers return. A biopsy was done on a metastasis to her hip which showed it 2% ER/PR+ and the rest TNBC. I'm leaving out some other things like a huge ovarian cyst and a large benign tumor on her kidney.
She was on capecitabine (Xeloda) for about 18 months and that kept her extensive spinal and hip metastasis in check. Eventually, it stopped working altogether. The Dr. said her spine lit up solid red from top to bottom. Next, her oncologist tried eribulin (Halaven). He related that it seemed to work well on TNBC and when capecitabine failed. Wow, did it work! Her last PET scan from 3 weeks-ago showed her completely clear of cancer. NED!
So I guess she can join your NED club. Just a question when and if her cancer returns does it always come back in the most aggressive form or does it vary from person to person?
MikeW.
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SandyBeach - I just LOVEwhat you posted below:
Side effects suck, but better to be 60% of who you once were, than 0%.
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Mike - Wow. What a story! I’m so happy that your dear wife has made it to NED after so many iterations and treatments. That story will provide so much hope for so many who get discouraged on failed treatments. As far as potential progression, I have never read that the most aggressive form comes back, however there is some logic to that theory. I think in your wife’s case, a biopsy would need to be done to see the properties of anything new and decide how to treat it. Best wishes that she is NED for a long long time!
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just popping in to say hello! I haven’t been on this thread in a while.
Always good topics and shares happening here.
Food with Ibrance - yes!
Sugar causes cancer - no!
Aggressive cancers are the ones that return - I don’t know!
I am having a bone scan and CT scan (from neck down to pelvis) on Tuesday. I haven’t scanned since last year in September so it’ll be almost 14 months since last scan. My MO and I agreed that we could be relaxed about scans unless there were “any new lumps, bumps or symptoms” that developed and so far we haven’t noticed anything so we haven’t scanned. But my family and friends are getting nervous around me and kinda have pushed me into getting them done even though I am feeling fine and still the same (which is much much better once I started treatments!).
So I am thinking about my scans coming up on Tuesday next week. My brother is going with me as support. I warned him that I take Valium, get diarrhea from the awful drink for the CT scan and that it’s an all day affair so to bring a book. He laughed and said maybe he’ll take a Valium too Hahahaa 😂
Humor is SO important!!
Hugs to all!!0 -
LovefromPhilly, diarrhea while on valium...hmm. All best wishes to you for easy scans and excellent reports. I'll have the same scans In a week or two.
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Good luck on your scans love from Philly! May you continue to be NED for a very long time! That is very interesting to me that your MO was ok waiting 14 months on a scan. I see that you were diagnosed in 2017. Do you mind me asking how the two of you came to this decision?
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Philly, I hope your scans go well.
You might want to consider a PET, as well. I also have bone Mets. I never have lumps bumps or symptoms. And yet I do get an occasional new met pop up here and there, and I change meds or radiate it and make it go away and keep myself stable.
Does your ONC use tumor markers? How does he determine if your cancer is spreading if he's not doing PET scans? I never feel my mets and I literally scan like 3 times a year.
I agree with your family and friends. And I do hope there is nothing to see.
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Love From Philly - will be sending you all those good vibes on Tuesday for a clean report. Once I became NED, my onc said we would move to scans every 6 months. I could probably talk him into longer if I were motivated to do so (I don’t think i am). Enjoy that Valium and all that time with your sweet brother.
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That is great news, Mike!! Cheers to your wife! There are people on here who have recurred and gone back to NED so it's not always the case that recurrences are the most aggressive. I think if you hit it with the right meds a second (or third?) dance with NED is possible.
Sunset, I have not had a scan in at least 3 years (10.5 years into NED) and won't likely have one again just routinely. My onc checks tumor markers, blood counts, inflammation markers, glucose, insulin, liver and kidney function, does palpation, abdominal ultrasounds and lung x-rays.
I had a mammo and breast and axilla ultrasounds the other day and all were clear.
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Heidihill, did you have a single metastasis? That’s an incredible, inspirational story
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hi all! All very good questions!
My MO and I do a physical exam every time I come in each month, bloodwork each month and basically he doesn’t follow the “standard of care” for 3 month scans as he feels in his clinical experience that it isn’t always necessary based on how people are responding to treatments. I was scanned upon diagnosis last year in April 2017 when I discovered my MBC status and then we scanned again in Sept 2017 and saw that I was NEAD and that the bone tumors had healed/are sclerotic and that the breast tumor showed no signs of cancerous activity.
We discussed the pros and cons of the 3 month scan and both agreed it was okay to follow and watch unless I became anxious or symptoms or lab results changed. We discussed how it may be possible that in the future I may end up needing to be poked and prodded quite a bit more, and so let’s just keep it at its minimum at this time while we still can.
I know it is a bit freaky of us to be doing things this way - and trust me, I worry a lot sometimes reading about others journies and the ups and downs of this disease.
I also realize that I may get bad news. Or good news. Basically we are just aiming for a fresh “baseline” from where to work from.
And we are both comfortable with this decision. But yes, for sure I am always feeling worried about each cough I get is Mets to the lungs, or when I feel aches and pains that it is the bone Mets coming back. This disease haunts me every day. But it also gives me some freedom from it to do it this way.
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and thank you for the recommendations of additional testing and the good vibes!!!
I’ll ask MO about PETscan as well as the tumor markers. If I remember correctly, the tumor markers are not something that my MO finds a good indicator (I know there’s a ton of debate on this topic).
Heidihill: can you please explain what the glucose and insulin tests would show with regards to cancer? Thanks and also thanks for sharing your inspiring story!
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Heidi... that's so amazing. You are one "lucky" lady. I do use the term lucky a little loosely here...y'all know why. But that is really inspirational.
Philly, sounds like you and your MO have your plan..and that's the way it should be. I always think, if by some miracle the cancer doesn't eventually kill me, I'll eventually die from the side effects of all the radiation and toxic meds. lol.....ironic.
My scan is in two weeks. Looking forward to hearing good news on mine and on yours. Keep us posted.
Sunset
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Heidi - you are amazing! I didn't realize you'd been NED so long. Very inspirational.
Philly - good luck with the scans. I do mine every 6 mo... my oncologist has suggested once a year and similar to yours, just monitor "how I am feeling" and my bloodwork in between. I do CT and Bone scan back to back. I have actually developed an allergy to the contrast they give you in a CT Scan, and now I have to take steroids for 2 days before the scan, followed by Benedryl the morning of so that I avoid having an epileptic seizure during the scan. So first I am a starving, grumpy maniac and then I fall asleep during the scan. This is a new thing for me; apparently this allergy can develop over time. Anyway, that may motivate me to start going once a year instead.
I think it's hard to get insurance to pay for a PET scan unless there is a good reason for one. I think I have shared my recent, unnecessary scare.... I did end up with a PET scan after 4 years of not having one, but still got the all clear and NED. Hoping to skip that experience going forward.. at least for a while.
Hope everyone has a good weekend!
Andi
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skyfly, yes, I had one bone lesion in the spine. That makes me oligometastatic.
Brenda, I haven't actually asked my onc the reason for those particular tests. I know he is very keen about weight maintenance, so I try to lose a few hundred grams before an appointment with him. He prescribed Metformin for me early on and was disappointed that I only lasted a month before refusing to take it. (It made me constipated and my muscles weak.) He probably sees a metabolic basis to cancer growth worth exploring. Or he is just monitoring for side effects where cancer or cancer treatment might make us more susceptible to insulin resistance. I read this article recently which explains the Insulin connection as it relates to leukemia, but it probably is the same with breast cancer.
https://www.sciencedaily.com/releases/2018/09/180928131255.htm
- Cancer hijacks the microbiome to glut itself on glucose
- Date:
- September 28, 2018
- Source:
- University of Colorado Anschutz Medical Campus
- Summary:
- A new study shows that leukemia actively undercuts the ability of normal cells to consume glucose, thus leaving more glucose available to feed its own growth.
I've cut down on sweets but still gorge every once in a while. My onc once suggested taking Metformin around Christmas time. No way. I do exercise to try to keep the damage under control.
Andi, I've also developed an allergy to the CT contrast.
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Hi, everyone. Lots of interesting comments here.
I was diagnosed with mbc at the beginning of 2011, and would say I had it sooner than that since I remember seeing a huge dimple in my ample left breast in late 2010 just before I felt the lump. So, I’m going on almost 8 years and after the big treatments the first year, have been stable, ned or however you want to phrase it, since then.
Regarding sugar. I do not avoid it and eat something sweet every day. It was also hard for me to exercise after diagnosis so I gained weight, only beginning a walking routine last summer that helped me shed about 25 lbs.
Adjusting diet after a bc or mbc diagnosis is personal to each person. I do some things to make me feel like I have a bit of control. I used to joke that I drank so much diet soda,
I should have a steady IV drip of it going in my arm. Well that crap is not good for you. So I mostly avoid it now and increased water consumption by a lot. I upped fruits, veggies & nuts but still eat meat. I take several supplements but not gonna break the bank doing so. No juicing, enemas, baking soda or cottage cheese diet.0 -
mike, how nice to hear the good response your wife is having with treatment. There are other types of cancers seem to come back aggressively, but I don't believe that is always the case with mbc. We have women on these boards who beat down signs of progression, sometimes over and over again. It does seem to vary from person to person.
Heidi, I know I say this from time to time, but you are one of my inspirations , I always love hearing about your longevity with mbc.
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Philly, haha, love that comment from your brother. You are right, it helps so much to find some humor about this from time to time.
I've had scans every 6 months since the 2nd year dealing with mbc. (The first year a few more for diagnosis, then to measure treatment effectiveness). Over the years I had numerous PET scans then went to the CT and bone scans due to insurance.
This past March, I had a conversation with the onc about going to yearly scans. She was hesitant tho eventually agreed. So it surprises me that an onc would agree to yearly or longer so soon after initial diagnosis. But it you are okay with it, I'm glad that works for you. One reason I requested going yearly is that the constant doctoring gives me anxiety. Without the six month interruption, life feels much more normal. I also requested to go from every 3 months getting the zometa bone strengthener IV to every 6 months. Again, onc had her reservations about the switch tho agreed.
She does the ca15-3 blood test which I guess is the tumor marker gage along with other routine blood measurements, and I get a physical exam.
I am not considered ogliometastatic as bone mets were found on the hip, rib, scapula and a scattering along spine.
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Thank you for your reply. Im trying to remain positive and your pointing out that there are reasons to be so is helpful to me. I hope your latest scan still shows NED status!
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Thank you for your response. I feel it helps to talk to others in the same situations and to read stories that are positive and full of hope. I appreciated the article too.
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The thing is, that the more active cells are the more energy they need. Cancer cells demand more energy to live. PET scans use glucose to determine if cells in your body are very active and are burning energy to survive
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I'm just hopping in to say hi, all good here and great to see the thread is so active.
I read this article and thought that it was quite interesting
I hope that the link works
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Heidi - interesting article, and UCH happens to be where I am treated. It's an amazing research facility.
Divine - I couldn't agree more on the constant doctoring. I can barely handle the days when I have the back to back CT and Bone scans, because I am in the hospital for at least 4-5 hours, and then that afternoon to see oncologist, or back a few days later. I totally know what you mean about wanting some control... it's one of the reasons I WOULD like to switch to once a year scans. It's sort of a quality of life thing. I think I have mentioned before that although I am supposed to get Herceptin every 3 weeks, I usually go every other month... sort of the same thing... and get my Xgeva once a quarter. It still feels like a lot.... I am looking forward to the day (hoping I MAKE it to the day) that Herceptin or whatever the next drug in line is can be taken orally, which my oncologist has told me isn't that far away.
Again, also agree that diet after cancer diagnosis very personal, and so many mixed messages out there about sugar. I just can't completely give it up... I have always been a sugar fiend! Instead of giving sugar up, I did cut back on processed foods, carbs, chips (another addiction)… that kind of thing... and added more fruit, veggies, nuts, supplements. I need to drink more water. I have not given up alcohol, but have cut back.
Hope everyone is having a good week!
XO
Andi
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I'm not certain but I think that anyone who gets to NED can be categorized as oligometastatic. Or maybe there is some other element involved if one is not originally oligo. In any case this should be of interest to us all.
Summary of Dr. Wiechelbaum's ASCO presentation here;
It doesn't show in my signature, but I had local ablative therapy in the axilla, chest wall (IMRT and surgery) and the spine (IMRT), as well as prophylactically in the supraclavicular area (IMRT) in 2008.
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Hi Heidi
Thanks for posting those articles. They are hopeful and are based upon the premise of local ablative therapy.
I am still NED. Diagnosed with one 2.9cm internal mammary metastasis in 2017. Here in the UK I was considered for the CORE trial which was for oligo patients: comparing standard of care radiotherapy versus SBRT.
I really wanted a shot at this because I'd read promising info about potential curative outcomes. However, my PET or CT ( can't remember which) showed NEAD and a CR making me ineligible. To be fair the position of the tumour was prohibitive as it was close to major blood vessels etc.
I will always wonder though whether this might have given me that shot. The oncologist said that my response in March 2018 was excellent and that the vascular picture looked like a normal patient.
In my head I tell myself that I could be stage 3C but my dr has always stressed metastatic and that I will reoccur eventually.
I do hold onto this though, rightly or wrongly it helps me cope.
Andi, I hope that Herceptin pill hurries along soon. I currently have Perjeta too by IV.
My last echo was 60. I hope to tolerate HP for a long time having responded so well so far. I am on six monthly scans.
Liz
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It's funny. Last month I asked my oncologist if I could take a break from treatment and he readily agreed, giving me three months' reprieve. Now, every so often I find myself thinking, "Oh bleep, what if I'm giving the cancer a chance to break forth and grow?" Then I tell myself my doctor never would have agreed if he didn't believe that was extremely unlikely.
Right?
Worrywarting yet hopeful,
Tina
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Right, Tina!!
According to the SOLE trial (letrozole extension) three month breaks after continuous letrozole therapy improved quality of life while not killing patients but perhaps killing occult micrometastasis through estrogen-induced apoptosis, It may not be totally applicable to you but the idea is there.
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