Breast cancer stage 4

Hi again Sandy,  Glad to hear from you again. Guess what? We're both seeing our Oncologists on Feb. 23! Good luck with your PET scan on Friday. For some reason I don't get PET scans, just CT scans. Mine is at end of March unless he re-schedules it.

I'm glad you're juicing and taking the supplements. Are you taking a good multivitamin? I find that I get tired easily and the vitamins help. I'll be anxious to see if I can get back to the Turmeric and Ginger capsules.

I think I mentioned that I have Lobular BC. Well, I watched a webinar on another site that was all about Lobular BC and it said that this type of BC responds well to Estrogen inhibitors. ( like Arimidex , Tamoxifen, Faslodex ) Well, mine didn't! I kept trying to find out why. I pulled out my Pathology Report of 2012 and read it over. It said that I have "Pleomorphic" Invasive Lobular BC! Well, in the video it mentioned that those patients who have the Pleomorphic variant of Lobular BC should be given chemo. I wasn't! I can't wait to share this news with my Oncologist. As soon as I was put on an oral "chemo" pill, my markers dropped way down. Lobular BC is one that is just now being studied more. It looks different than ductal and is very hard to see on a mammogram or any scans. They had an International Symposium strictly on Line Bukhara BC in Pittsburg this past Sept 2016. Another symposium is slated to be held in 2018 in Boston. So, I learned something new about my particular BC. This may affect the treatment I get in the future.

I also have the green blend of grasses that I add to either water or in my juice. It doesn't taste good at all by itself in water. But they say that the chlorophyll in the wheatgrass or green blend is supposed to be very good for our immune systems.

How is your appetite? If you're on infusion chemo, then I imagine it isn't that great. Right now my appetite is pretty normal. At the beginning it was awful and I lost a lot of weight due to nausea and lack of appetite. That's why I really don't want to change drug treatment plans. I googled Ibrance and the biggest side effect is low white blood cell counts. Ugh. I'll let you know if I'm heading in that direction.

Oh, here's a tip from my juice book. They say to wash and get your vegetables all ready and put them in the fridge so that when you want to make your juice, it'll be much easier. I haven't been doing that and sometimes I skip a day or two because I don't feel like doing the prep work. You can add some raw broccoli in with the carrots or a Granny Smith apple with the seeds, or simply a celery stick to change the taste a bit. I do that off and on. I'm going to try to make and drink the juice twice a day if I can get myself disciplined enough to do it. My friend's sister-in-law drank the juice all day long when she got her BC diagnosis. This was many years ago and she's fine today. But I've read books on Cancer diets and they all mention juicing carrots. Worth a try!

Bye for now. Keep me posted with what's going on with you. Glad you got a new computer! I'm using an IPad.

         Take care,    Kats2

Thank you Vicki Sam for your nice comment. Yes, we need to help each other as much as possible. Seems we learn

a lot from each other! Hope you're doing well.   Kats2

Hi Sandy, How are things going for you? Long time no hear. How did your PET Scan go? I go for bloodwork tomorrow and see doctor on Thursday, 23rd, like you! Let me know how you make out with your appointment. I'll say a special prayer that all goes well. I always get anxious before my doctor visits. It's certainly a roller coaster ride!

Oh, I wanted to say that you can drink your juice or wheatgrass drink with food. It doesn't have to be on an empty stomach. 

   Sending you healing positive thoughts!   Kats2

Hi again Sandra! Well, I'm glad that you're getting started on another treatment plan. And glad too that your doctor was more positive at your visit yesterday.

I'm still a bit perplexed about his reluctance with Ibrance as this drug has been approved by the FDA and it's in the arsenal of accepted drugs to be used by those who meet the requirements, which I believe is to be Her2-, which you are. You DON'T need to be in a clinical trial to get on Ibrance. Does your Oncologist think that you do??? They usually put it with an aromatase inhibitor like Letrozole or Faslodex. This is basic standard treatment and no big deal. Can you clarify your doctor's thoughts about a clinical trial? Maybe it's because you have other organ involvement?

My doctor wanted to get me on the Ibrance + Letrozole yesterday as my tumor markers climbed up  once again by 58 points. I held off because I told him I want to go to Dana Farber again, this time at a Satellite site nearer to me. I told him I'd like to see if I can get genomic testing of my DNA to check for any mutations which cause my resistance to the estrogen inhibitors. I may be able to have a simple blood test which would be sent away to either Foundation 1 or Guardant Health, I believe in CA for analysis. Two women that I'm in contact with have had it done and have received tons of gd information abt their cancers, and also if they qualify for any trials. Of course a tissue biopsy is best, but I don't have that seeing as the BC is in my bones. That's what I want to talk about with the other Oncologist at the bigger facility.

Have you ever gotten a 2nd opinion from another doctor maybe at a larger hospital or center than where you're at and that would have knowledge of genomic testing and would it be good for you to look into or not on how best to treat your BC? Insurance pays for 2nd opinions even third ones. And your doctor should welcome any extra knowledge that would be provided I'm sure. Mine did. I had a 2nd opinion in 2015. Now I want to get into this DNA area, especially finding out why I don't do so well on the anti- hormone meds and other women like me do. I believe I'm hormone resistant.

I did the best on Xeloda, the oral chemo pill. Also I have an extra component to my Invasive Lobular BC. I have Pleomorphic ILBC which means it makes it a little more aggressive. I want that looked into more. He agreed with me on everything. He knows that I didn't have good experiences at another Cancer facility at the beginning of my BC journey. I question EVERYTHING now and am my own best advocate.

About the juicing, I had to laugh when you said that you didn't have the pulp container in the right place and there was a calamity! I did something similar. I forgot to put the beaker under the spout!! Juice came flying out all over the place!! I'm more careful now. Also that wheatgrass is putrid! I add a tbs of it sometimes into my carrot juice after juicing. It turns the carrot juice an ugly green but the taste isn't as bad as when it's just put in water. Try that off and on.

Yesterday my Onc approved all of my supplements, the Turmeric capsules, Ginger capsules, mushroom powder, extra B Complex ( because of fatigue) Milk Thistle, multivitamin, mushroom tea and  coffee. So, I started up with a lot of that stuff again. It takes me more motivation to do the juicing but from the anti-cancer books I've been reading, carrot juice is very very good for our conditions. So I'll have to try harder to drink more if it. It's tasty I think. And I do feel like I'm doing something good and nutritious for my body after having had it.

Did you say that you have pain after your Xgeva shot? I just had a Zometa infusion yesterday. They give me a 10- minute infusion  of Decatron first which helps alleviate any bone pain that I may have after, then I get the Zometa infusion. My doctor is very smart. Not all doctors prescribe this Decatron as I found out from the nurses. Today my bones and myself feel great! The Decatron can make me a bit hyper though. I was up late last night because I couldn't sleep....too wound up. I'm getting this infusion every 3 months now.

So that's what's up with me. Thanks for your update too. I'll keep you in my prayers Sandra. Prayers are powerful. I will pray that your treatments especially with Gemara go well. Keep in touch!      Kats2

Hi Sandra, What tumor marker test do you get? I get the CA 15-3. My markers are now at 641. Climbing. There's also the 27-29 test, with different # ranges. At one point, when I was on Faslodex, they shot up to almost 5,000! That's when I was put on Xeloda. That helped for 20 months. Now I'm heading to Ibrance w Letrozole.

But like I said, I'm now interested in having genomic testing done on my blood. They say if you're on Medicare, the genomic test by Guardant Health is FREE! I'm not on Medicare, unfortunately because I was a teacher and they didn't take out SS from my paychecks. I have BC/BS from my school district with me paying 1/2 the premium and lots of co- pays. I'm hearing that if I go to Dana Farber in Boston, it's in my Network, and I would have full coverage of everything, lab work. etc. I had planned on going to their satellite site. We'll see. 

Now on top of all this, my Oncologist will be out for a number of months because he's having his two knees replaced! I think I'll be seeing his PA when he's out and she doesn't know me at all! Ugh.

 Is Gemzar an IV chemo? Do you know the Grade of your BC? Mine was Grade 2 but I have that Pleomorphic thing with my BC, which supposedly makes the grade higher. It's all so complicated!

I haven't done the juicing in 3 days. Seems I run out of time! I have to get back to it tomorrow. I've been doing more with my mushroom tea, capsules, etc. I'm back on the Turmeric and Ginger too. I take Milk Thistle capsules off and on. It's hard to take all of it! Then there's the Multivitamin and B Complex. I find that my energy sags especially in the morning so I need the B complex. How's your appetite? Mine is better now. I still lost about 20 lbs since this all began.

I have "The Conquest of Cancer" by Dr. Virginia Livingston-Wheeler with Edmond G. Addeo, and "The Cancer Killers" by Dr. Charles Majors. They give you suggestions as to what to eat, supplements, etc. The biggest thing that is brought up is to try to eat ORGANIC! With meat, try to get grass-fed, antibiotic-free, hormone- free meat. Eggs should be from open-range chickens. There's a lot more to keep in mind. My juicing carrots are organic. And try to staton away from refined sugar! I stopped my chocolate eating this past month. There's a lot more info on all this stuff either on- line or in Anti-Cancer books. There was a great book that I found in my library...  forgot the name of it! But you get the idea. Go to the Health Book section of your library and you'll find lots!

I want to have my CT scan done before my Onc leaves! My bones hurt again! I'm just taking Ibuprophen 400 mgs for the pain. Oh! The real name of that infusion of Decatron is called Dexamethasone, dose is 10MG. I've always had that given to me before each  Zometa infusion. It helps w the pain but makes you hyper for a while. 

I asked my doctor how I was doing and he said better than 90% of his patients. He said that my cancer is going at 5 mph and not 60 mph. I hope he's right. Of course there's always that fear that things will change and progression is the biggest fear! I want my BC to be frozen and completely inactive! Don't we all!!??

Let me know if you can get genomic testing. I'm very interested in it and hope it leads to newer and better treatments! I don't about you, but I have episodes of anxiety which is no fun. I take anti-anxiety pills as needed. My doctor will prescribe antidepressants if I think I need them. So far I'm managing.

Be strong Sandra, and everyone else out there dealing with this disease. As a Stage 4 Metastatic life-long fighter, I must say that I hate the color pink!!!        Kats2

Hi Sandra, Am sorry to hear that you've been in the hospital with a UTI. It must be the chemo that caused this. I've heard other women saying that its happened to them too. Those chemo drugs can be strong! When my hemoglobin got in the 9 range like you, I had to have Procrit shots once a week to bring the level up. It's now 11.8 and normal level starts at 12. So I'm not quite normal but close enough. I hope your level starts rising. With it being low, they consider that to be anemia. I know that I was really tired and out of breath but didn't know what was causing it.

Rest up. You're going through a lot. I hope you have someone at home who can make you some good nutritious Food like maybe home-made chicken soup!

Will say special prayers for you to get better soon! Bye for now.     Kats2

Hi Sandra, Here's what I would say to anyone giving me negative comments on my situation: "With God all things are possible."( So, what does that leave out? Nothing!) Keep these negative Nellies away from you and surround yourself with only positive people. You don't need to be dragged down and made to feel worse emotionally and mentally. You have enough on your plate. I strongly urge you to be as positive as you can. Get outside in the fresh air if possible and breathe deeply. Cancer hates oxygen! Trust and work with your doctor. So many new treatments are out there and lots more coming down the road.

Ask your doctor about genomic testing. ( liquid ( blood) biopsy is being done now for this test ) Ask him about surgery and/or radiation for your liver. I've heard many women who have had surgery, radiation,+ special treatments for their livers. ( (ablation?) Some of these women have bone, liver, AND lung mets and they're going forward. One woman has had mets to her brain and has had 3 operations, radiation, and is stable right now. She's very positive about her situation even after all she's been through, and she lives alone with her cat!!

Don't give up. Immunotherapy is also something to consider. Find out if there's someone who specializes in your kind of metastisis and may be able to suggest something more for you to do. Ask your doctor for suggestions as to where you should go for these latest tests and treatments. My doctor doesn't do clinical trials or genetic testing but told me where I could have these things done. I'm planning on doing so. 

Try to rest up Sandra. Get yourself as strong as possible so that you can contend with your situation. Watch funny movies and try to laugh! That was recommended to me a while back. And for sure, surround yourself only with people who encourage you and lift you up emotionally!     Ciao for now.   Kats2

Hello, my name is kathy i am stage 4 invasive labular carcinoma and it mets to my omentum and to my lower lumbar vertebra and sacrum and posterior pelvis, and along the right diaphragmatic crus posterior to the IVC my tumor timer was in 900's and went down to 18 and has been there a while and last month it went up to 56 i was on arimidex and xgeva, my Onc. took me off the arimidex and i am starting Ibrance and Faslodex tomarrow and am very nervous, im 48 , single mom and a nurse and am ER/PR Positive and HER2 Neg. just had a CT/PET and full body bone scan done (again) and this one shows the omentum caking is returning from last test in 2015 where since that one it was resolved and now its back, what does this mean? my Onc. is great but i have not had a 2 opinion done , should I? this pet shows a area of associated uptake along the right diaphragmatic crus posterior to the IVC also remains metabolically active , very similar to 2015 scan. the caking formation is along the left midabdomen extending from just deep to the left rectus sheath inferolaterally along the anterior peritoneal surface. maximal internal SUV at this level is measured at 7.2 where it was 9.7 in 2015. its says also, although there is really not a well defined associated lesion. only some minimal soft tissue thickening is present at concurrent CT. Maximal internal SUV is now measured at 12.6 compared with 12.7 on previous imaging. no futher definitive recurrent metabolically active tissue is identified . show fairly advanced backround bowel activity. normal bilateral renal uptake and excretion is noted . previously identified bone lesion seen in september 2015 have responded to therapy, however there are several new small foci of utake with in the lumbar spine and sacrum. there is some mottled uptake along the bilateral posterior ilium , no abnormal uptake is identified at the neck or chest , limited CT imaging demonstrates no further significant findings. can anyone explain this to me please? also my scan stated no major organ is effected at this time, lungs , liver, kidneys ,spleen are unremarkable. i have been so depressed all i do is work,(to pay bills) and sleep, i dont leave the house , ive gained 100 lbs before i found out i had cancer because i was to tired to work out and run whick i did daily and went to the gym 6 days a week, no i do nothing, ive given most of my stuff away and wont date, adn quit school , because i figure whats the point, two of my children are grown and on their own i have a 16yr old son at home still, i just have no hope, i hurt all the time and cant breath most of the time. any one help me with all this? being a nurse really isnt helping because i dont know any of this and i work with dying pt now, Hospurus care. which doesnt help how i feel either. thank you   kathy