Breast cancer stage 4

Hi. I have bone mets diagnosed Oct. 2014. I'm also ER+ and Her2-. Even though I was 95% ER+ the hormone drugs Tamoxifen, Arimidex, and Faslodex didn't work very well for me. I've been on an oral chemo drug, Xeloda, for 19 months. My doctor has me on a low dosage of 3 pills a day for 3 1/2 days and then off 3 1/2 days. It agrees with me and I hope I can stay on it for a long time. My Onc checks my tumor markers every month and I see him once a month. My markers have been climbing the last 2 months and if they go up this month, I may be switched to Ibrance with Femara. ( Letrozole.) There have been a lot of positive results seen with this drug combination.

I originally had a tiny lobular tumor in my left breast in 2012. I had a lumpectomy and 33 rounds of radiation. No scans or tumor markers were done on me by my former Oncologist. In June 2014 I had awful pain in my ribs. Went to my primary doctor. X-rays and scans were done and then a bone biopsy showed that I had bone mets! I couldn't reach my Oncologist in a city 25 miles away. That was when we parted ways. I now have a caring doctor who does tumor markers and is watching me very carefully. X-rays in Sept 2016 showed healing of my fractures in the ribs, pelvis, and spine. I was getting infusions of Zometa every month. That's a bone strengthener.

I never had regular chemo. I'm feeling so much better since 2014. If I overdo then the bone pain comes on. I only take Ibuprophen now, 400 mgs and use Lidocaine patches and a heating pad when needed. At the beginning I was on Oxycodone. I took it for 4 months and became so nauseous that I needed infusions of Zofran. Now I have a prescription for the pill form of Zofran but don't really need it anymore. The Zometa infusions really helped with the pain. I'm still getting the infusions but now only every 3 months. Some women need to have radiation to different bone areas. I'm not at that point.

I was so devastated by my diagnosis and also extremely nervous and anxious. I have made contact with a group of metastatic women and we do teleconferencing twice a week. One women has had metastisis for over 20 years. So I feel somewhat better about my own prognosis which is unknown.

I went to Dana Farber for a 2nd opinion and was told that I was on the right medicine.The doctor told me to eat nutritionally and to stay active.

I went to a Health Food Store and got a real good whole food multivitamin, some turmeric capsules and also ginger capsules and also bought Milk Thistle capsules which is cleansing for the liver, and recently bought tea with mushroom extracts in it and also instant coffee with the mushroom extracts. My doctor has approved what I'm taking. It's all organic stuff, no artificial anything in it. I feel that I need to be proactive in my getting well. I try to go for walks in the neighborhood and have recently tried a little swimming at the Y. I was sore after doing the swimming but it felt good to relax in the water. I also pray a lot and do visualizations where I visualize  myself Healthy and disease-free. 

I hope I've shed a little light on my Stage 4 journey. Let me know more about your treatment plan. I wish you the best. With good treatment and more and more new drugs coming out each year, there's hope for us to be around for many years. I feel a lot more hopeful and positive than I did 2 years ago! Think positive  thoughts all the time. It definitely helps. Also if you can go to a support group, that'll help too.

             Keep us posted!        Kats 2

No advice-just sending hugs and pixie dust

Denise

Hello again,

I wanted to ask Leslie what FEC-T is. And why is your liver scan almost a whole month away? Are you still on Tamoxifen? Sounds like you're ER+. You don't mention Herceptin so must be Her2-. What are you taking for the pain? I hope you're in contact with your Oncologist and telling him of this pain and  all the anxiety you're having. Maybe he can get you in for an earlier scan. The squeaky wheel gets the oil you know. We must speak up and be proactive with our care. I've learned this the hard way. Wishing you the best!     Kats2

It is a hard place to be.  It has spread to brain, lungs, it has been in my liver, skin,  connective tissue.  My first pet

following the stage I , said bone mets were too numerous to count. All of this started in 2002.  Now though, I am out of options.  I have had 3 oncologists.  Tamoxifen and Femara did nothing, the cancer continued to grow. Arommason took my tumor markers from 500+ to 24.  It has given me 3 more years.  My last tumor markers it had moved from 300+ to over 800.  At this point I went on hospice, I have been on 8 Chemo with stage iv, and one helped get rid of the liver lesions, but all other tumors continued to grow.

My advice is if you are questioning, get a second opinion for your own peace of mind.  I think all 3

oncos did their best, just all with a different approach.

I wish your whole family the best as this disease affects the whole family.  I have been so fortunate with friends, family, and this amazing group!  Wish I had better results, but I did get

to spend extra time with my grown sons and got

to meet many from this site!  Now the pain is so bad that I am at peace with where I am and so are my sons.  They say it is too hard to see me in so much pain!

Hugs and prayers

Carol

Sandra62 said:

Stage 4cancer/mets

Thank you Katz 2.     Our treatments are so alike.  Right now I'm on chemo doxil. One treatment a month.  Tumor markers went up a lot but had second treatment of doxil today anyway.  Feb 17 having another pet scan.  I'm just wish there were more treatments available involving HER2-.  After this one I'm told only three types of chemo left to treat me.  I take milk whistle for my liver and immune power supplement made with mushrooms. I will get some ginger caps and turmeric.  What brand name are they?    Please keep in touch.   

 

 That scares me.  

Hi Sandra62,

What type of chemo is Doxil? IV or pill? Also have you been on Tamoxifen, Arimidex, or gotten Faslodex shots? All hormone blockers. Have you been on Xeloda also known as Capacedebine? 

My doctor says that tumor markers are like the Stock Market....they go up and down. It's only when they rise steadily over 3 months that a change in treatment needs to be made and this change is usually confirmed by a CT or PET scan too. 

I don't know what is making you think that there are only 3 more types of chemo left for you. My doctor told me that there were many, over 8-9 drugs for me down the road should I need them. There are also clinical trials with new drugs available. I asked my Oncologist if I should consider getting into a trial and he said not at this point. I trust my doctor very much.

When  I saw him on Wed., my markers had gone up 100 points. He's keeping me on the Xeloda for another month and has scheduled a CT scan for the end of March. I too am worried about my liver. When I was first diagnosed with BC in 2012 there was some question about the state of my liver and I was sent for an Ultrasound. Nothing came of it. Now, in 2015 a CT scan mentioned my liver again and that I could possibly have metastisis there. They weren't sure.  My CT scan of Sept 2016 mentioned my liver and the radiologist wrote that it appears that the changes seen in the liver were most probably from the drugs I was taking to treat my BC. 

Because I'm so concerned about my liver, my Oncologist has scheduled the  March CT scan. I'm scared to have it done but it may put me at ease too.

Is your BC ductal or lobular? Mine's lobular, the sneaky one. Ugh!

I showed my doc the Turmeric, Ginger, and also Kidney capsules with mushrooms in it. He's going to have his pharmacist, Mike, check to see if these supplements would interfere with my Xeloda. So he told me to stop taking them, but that I could take the Milk Thistle and drink my tea and instant coffee with the mushroom extracts that I bought at the Health Food Store. I'm taking a whole food multivitamin every day too. So, to be on the safe side, I'd run this supplement stuff by your Oncologist. I'll let you know what my doc says when I find out. The Milk Thistle my doc says has been around for ages. I like the fact that it helps detoxify the liver. Did you buy a bottle? Get this stuff from a Health Food Store. Their stuff is organic, no artificial anything, no GMOs, etc. Costs more but worth it.

I just feel that we have to keep our immune systems strong in order to fight this disease! I've read books on cancer and they say that it's a top priority to get that immune system STRONG by eating well, getting fresh air and exercise, meditating, getting more relaxation with perhaps a massage etc. I've never had a massage but will look into it down the road. Instead of staying in, we need to do fun things if possible and try to change our thoughts. It all makes common sense. It's hard for me to put this cancer thing out of my head, but I'm trying hard. Even a short walk outside changes my state of mind and I need to do it more. It produces endorphins which are the "feel good" chemicals. 

Glad to share with you. Keep in touch and know that you're not alone in this hurdle! Keep thinking positive thoughts that you'll be well. The universe will respond to what you're putting out to it. (I've read a lot on that topic too!) The power of positive thinking.  Bye for now....  Kats2

Dear Sandra62. If you would be interested in my story "How I Beat Stage Four Colon cancer" just go to my site and click on blog and my story will come up. I have no medical advice, just what worked for me. God Bless   blessed39

Sandra62 said:

Stage 4 cont

Hi Katz2.    Yes I have been on all the ones you listed.  Doxil is IV.  My BC is ductal.  my oncologist said there were only 3 left to treat mine plus clinical trials.  Maybe because mine is ductal makes a difference.  I hope you are right.    I have not been on Ibrance, as Dr said my insurance may not allow it as I'm stage 4 and its a first line treatment.  I'm going to ask him to see if insurance will.   My tumor markers went from 84 to145 last week.  Dr said kind of same thing how they go up an down.  I've been on Xegxa shots 2 yrs.  I sure hope my fractures do heal soon.  It's nice to know I'm not alone with having them.  The fractures interfere with my ability to walk.    I agree we need to keep our immune system strong.  SEEMS LIKE IT IS TREATING THE ENTIRE BODY THAT IS NEEDED.    I finally decided to clean up my diet after my appt last Thursday. It is time.  So no sugar and trying to eat more vegetables,raw and cooked.  The Dr said my liver is a major concern and the supplement milk thistle is ok.  He also said my monthly blood tests would show symptoms if the liver was having problems and there would time to do something.  I found some meditations online and am going to try that too.  My faith is strong but boy some days are just tough.  We live in Fargo, ND, so with the snow and ice I have not been out for walks. I'm so scared I will fall.    I bought a walking inside DVD, so am going to start that slowly.  I have a tendency to jump in and over do.  Then I am laid up for months.  Please let me know about the mushroom supplement.      hope to hear from you soon.  be well.   

Hi again Sandra,

I am baffled about what your doctor said about Ibrance. If you read many of the posts on this site and others, you'll read that many Stage 4 women are on Ibrance with Femara also known as Letrozol or Ibrance with Faslodex or Aromasin. These drugs are for Stage 4 women, Her2-, like you and me. As a matter of fact Ibrance + Femara came about in a trial called The Paloma Trial and has shown very good results. Perhaps you can Google it and find out info on Ibrance.

Is your Oncologist well-read on the latest drugs for Stage 4 BC patients? Some of the Stage 4 women I've communicated with were put on Ibrance IMMEDIATELY when their Stage 4 diagnosis was made. Some have been on it for several years and are doing well.

My doctor will be putting me on Ibrance within the next two months if my markers continue to climb. This would be my FIFTH drug, not first, that I'd be on. So I don't understand how your doctor can say that it's usually given as a first line of treatment. My first 3 drugs were all anti- hormone drugs as my BC is strongly Estrogen +. They didn't help me much. So I was switched to the chemo pill Xeloda and that has worked for 1 1/2 yrs. But cancer is smart and finds a way to outsmart the drugs so that it can survive. That's when a change of drugs is needed.

Ask your doctor if he's heard of The Paloma Trial. I was impressed that my Oncologist knew of it right away as he doesn't treat just BC, but all types of cancers. He's a doctor who keeps up on research and treatments. Google Paloma Trial and do some investigating on your own. 

I don't believe your having Ductal BC has anything to do with not being treated with Ibrance. 

The imp thing is that you're Her2-. I know of only one woman who was denied Ibrance by her insurance and only because she's Her2+. Ibrance is NOT for them. So you should have no problem getting it as you meet the criteria.

My doctor said I can have the mushroom coffee and tea. He just wasn't sure of the Turmeric and Ginger capsules interfering with my Xeloda. I haven't checked on that yet. In the meantime I'm taking a good whole Food multivitamin, all natural, nothing artificial in it, also the Milk Thistle to keep my liver clean. I bought a juicer and am juicing 5 carrots a day in it sometimes with a piece of celery. Carrot juice has abcisus in it which is anti- cancer. You need to drink the juice right away. It goes right into your bloodstream. I also bought Wheatgrass at the Health Food Store. You mix it with water or juice. It doesn't taste  the greatest, but today I mixed a tablespoon of it in my carrot juice and it wasn't bad. I need to do this juicing more. It's very nutritious for your body. I bought a juicing book with very simple ingredients to juice. For cancer, carrots are the best, not whole ones, but the juice of them. There's a definite difference. Also I buy only organic carrots for my juicing.

Yes, walking on ice can be treacherous. But, you know what? I went to WalMart around Christmas and had several lbs of bird seed in my cart. While going into the parking lot, the bags of seed shifted to the left and the cart slowly turned on its side and fell over bringing me down with it! I was so scared that I had broken a bone! But no, I was bruised a bit but nothing broken! Thank God! I told my Onc about this and he said I passed the test of my bones being stronger. Someone said that the healed fractures will never be as strong as your original bones, but I'll take it! I do feel pain when I get up from a chair. It takes a while to straighten out my back. Sometimes I also limp a bit.

Ok. That's my "book" for tonight! Hope I cleared up the Ibrance thing. Let me know what your Onc says about it. Best wishes. And hang in there!   Kats2

Sandra62 said:

Insurance cont

Kats2.    I am so happy with what you said.  I will definitely be bringing it up to my oncologist.  I do feel he is very right on with the treatments,so this has me baffled too.  He does listen to me and we are a team so......   also, I will be buying a juicer and start juicing organic carrots.  I am growing organic wheatgrass now.  It should be ready to juice in 5 days.  The last batch I let grow too long and was bitter I could not drink it.  My stomach is so touchy with this chemo.  

I am so glad you did not break anything when you fell.  Yes, yay for bone strengthens!  

I will be getting mushroom supplement.  I am so thankful I found this site.  Thank you!   blessings.  Sandy

 

 

Sandra, I just wrote you a lengthy reply and it didn't get posted! I can't re-write the whole thing again but will just say that perhaps your Onc didn't put you on Ibrance because of your liver situation and maybe Dixicil is better. You'll have to ask him.

Also my juicer is a Breville, model # BJE200XL and it's not too expensive. I bought it on Amazon.com. Works great and it pretty easy to master. ( in case you can't find one around you.) I couldn't find a good one in my stores so tried Amazon. Am pleased with it.

I also take Calcium with D tablets every day for my bones. I have a packet of Critical Care Mushroom powder that I can put a tsp of in my juices, smoothies, or just regular food or soup. I got that from the Health Food Store. I want to get back to taking my Turmeric and Ginger capsules. Just make sure that you ask your Oncologist if the supplements you're taking don't interfere with the treatments and drugs you're on.

If you want to add wheatgrass to your carrot juice just make sure you put it in AFTER you're done juicing or it'll fly all over the place if you put it in with the carrots! It happened to me!

I'll write more tomorrow as it's getting late! Do take care and try your best to think positive. Everyday say "I'm healthy," and really believe it! Do this many many times during each and every day. More about this tomorrow and where I got this...... Bye for now!     Kats2