Breast cancer stage 4
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stage 4Kats2 said:Sandy, how are you?
Hi Sandy,
How are you doing? Haven't heard from you in many days. Hope all is okay with you. I'm still on Xeloda. Still have bone pain but dealing with it with Ibuprophen, heat, Voltaren cream. We have a nor'easter coming tomorrow. Will get bt 12-14 inches of snow over 12 hours! I have to shovel but hope my neighbor comes over to help. I have to be very careful out there.
Will you be getting Ibrance? Let me know what's new with your treatment and how you feel. Bye for now. Hope to hear from you! Kats2
Hi Katz, I have been thinking of you and finally got a new computer, so can type faster than with the Kindle I have been using. :-) I have my PET scan this Friday, and will see the oncologist the 23rd. I Have questions ready for him, sure hope he agrees to the Ibrance. HE always lets me talk and then he talks and then we make the decision together. I did get him to let me have a month of the Xegeva, as I have had so much joint and bone pain with it. I have been on it monthly for 2 yrs, and he agreed I could go to every 3 mos. I have been having alot of rib pain and back pain, especially the right side. I also bought a juicer and been making a 4 organic carrot drink once a day. Then I drink an 8 oz green powder drink mixed with water. I take it on an empty stomach and it does not always agree with me. This morning I had a very touchy stomach, and had to take a nausea pill. I also found a supplement called Immpower, it has mushrooms in it. I should probably take it in with me my next visit. I wish the Xeloda would have worked for me longer, but it sure didn't. I was on 4 pills a day. 6 pills a day didn't help, my markers kept climbing. Anyway, hope to hear from you soon. Sandy
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Hi Sandy!. .
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
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Extensive ProgressionMike555 said:Wow, seems like you did everything right
Wonderful and looks like you'll be NED for some time now. Here is my wife's current condition. Problem is her estrogen blockers,l aromasin and tamoxifen only lasted a year each.
Progression with one spot on spine as of October 2016. Oncologist wants to wait a few months to let it grow big enough for a biopsy. Complex case as she has had 3 different types of BC: ER+ 100% estrogen grade 1, ER+ 30% estrogen grade 3 and triple negative Metaplastic BC.
My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.
A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has three cancers, one ER+ PR+ HER2-, 100% estrogen, grade 1 and inside that was ER+PR+HER2- 30% estrogen grade 3 plus the triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.
After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign.
Extensive progression on spine. Probably Xeloda for treatment.
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Sandy, how are things going?
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
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Me again
Hi Kats2. My PET scan showed lots of progression in liver,shoulders,ribs,and spine. I have pain in my liver the most. The oncologist spent 2 hrs with me. We decided I start Gemzar chemo today. Treatment again next Thursday,and then a week off. He agreed to let me try Ibrance next. He checked for clinical trials and we found one at Mayo in Rochester,MN. I may do that soon. It all depends what Gemzar does for me. He assured me we have not reached the end, alot more positive than last visit. Oh that green powder in water is awful. I can hardly keep it down lately. I'm going to add an Apple or celery to it. What about adding fruit???? I'm going for the twice a day juice too. I'm going to try anyway. Lol. Tell me more about your sister in law drinking juice all day. Was it primary carrot juice? We will turn orange lol. I don't care just so I'm alive! My blood work was good. He said that could change soon with this chemo. I also got my Xgeva shot today. I hope I don't starting aching - I hate that. Yes such a roller coaster this journey is. I'm so thankful we pray for each other. I have to tell you the other morning I didn't have the pulp container in place correctly. My oh my I had carrot bits all over me, and places in my kitchen before I got it turned off. Then I spilled my juice and by then wanted to cry. What a start for the day!! Hope to hear from you soon. Take care. Sandra62
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How is your wife doing?Mike555 said:Extensive Progression
Extensive progression on spine. Probably Xeloda for treatment.
orked for me for a long time and I'm sure it will for your wife too. I hope she is doing better. Keep us updated. I meant to say Xeloda worked. For some reason I can't go back and retype that.
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Turmeric and gingerKats2 said:Sandy, how are things going?
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
I've been mixing 1/4 tsp each with a fruit smoothie (the ground stuff). I use blueberries, cherries and pineapple ( frozen fruit) tastes good.
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Hi Sandra!
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
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UpdateKats2 said:Hi Sandra!
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
My oncologist told me about the foundation one test, and they are checking with my insurance company. I should know next week. The cost is 5000.00 . The research nurse was checking on clinical trials close by for it and maybe I could get the fee covered too.
You sound chipper!!!!!!
I've been to Mayo in Rochester, Mn for 2nd opinion, and they said I was doing everything,they would do. That was when it moved into my bones.
Yes he knows I don't have to be in a clinical trial for Ibrance and Letrozole. He will give me it to me but doubts it'll work for me. He just felt I should do Gemzar first. PET showed so much progression in liver. I am beginning to question more. I was seriously thinking of going to Dana Farber.
I am going to check to change bone hardners. The bone pain is awful for me today. I will mention your doctor adding Decatron for bone pain.
How much carrot juice are you drinking a day now? I have blueberries and dark cherries and pineapple thawing right now for a smoothie. Wheatgrass is just awful, and tends to upset my stomach. I am trying the greens mixed in water with my fruit smoothie today. I have a tough time staying consistent with anything.
Are you on any treatment now? How high are your tumor markers? Mine seem to be consistent to what my PET shows. "My tumor markers are 175.
I ordered apricot kernels for B17. They are awful. I couldn't handle one.
Well that's it for now. You take care and you are in my prayers. Prayer is very powerful.
what books are you reading on cancer? I'm reading Anti Cancer a new way of life.
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The beat goes on...
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
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Hi!!!!!
My tumor markers are measured by CA 15-3. Cancer tumor grade 3. I was in ER Sat evening with 102.5 temp. I have a UTI Strep B. So on antibiotics, feel so crummy. My oncologist switched my antibiotics today , as culture was back. I may not get chemo Thursday. Hemoglobin dropped to 9.7. I'm crabby, will update more tomorrow.
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Hope your better!
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
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Better todayKats2 said:Hope your better!
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
I asked my oncologist about my low hemoglobin and he said it's from chemo, and hopefully it'll come up by itself. I sure hope so. I feel better today, finally. Yes I have heard the same thing women getting this from chemo. I forgot how awful some of these chemos can be.
I had a person tell me soon nothing will help me and every day is a bonus day now. She lost her husband in Oct to prostrate cancer. I got so upset after our visit was over, I just cried. My husband didn't seem to understand my emotional outburst. (My husband has prostrate cancer and is doing very well.) we were diagnosed 2 mos apart. I told him I don't need to hear talk like that period. My stomach is so off today just eating crackers so far. I pray everybody on these boards has a good day today. sandra62
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Keep positive thoughts only!
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
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How are you doing?
Hi Sandra, Were you able to get your Gemzar chemo yesterday? How are you feeling? Having an upset stomach is the pits! I had that a lot when I was on Faslodex.
I'm seeing another Oncologist at a satellite site of Dana Farber next week, March 8. My records have already been sent there but I'm bringing my Pathology report and other papers just in case. I definitely want to discuss the Genomic blood test. My doctor doesn't do this testing nor does he get involved in clinical trials. I called my insurance company and they said they'd need the procedure code in order to see if I'm covered. Time will tell. I just hope and pray that this woman Oncologist knows about Lobular BC! We're an under-studied group.
How do we go about e-mailing each other? Let me know. I have other info to pass onto you.
Hope you're feeling better. I very much relate to you and your feelings. I keep you in my prayers every day. I go to a Healing Service in a nearby town the first Sunday of each month. It helps me psychologically and, having faith, physically. We need to appeal to a higher power, God, in this very difficult time of our lives. Seems I'm doing more praying than I ever have.
Hope to hear from you again. Kats2
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I'm back!!!
Hi Katz2, Thank you for the pep talk. I'm getting my "positive" state of mind back. I am on something for my anxiety, and it's a low dose so sometimes when I have a bad attack I have to do a lot of "self talk" and "deep breathing" to get back to my happy place. I know I could not go through this journey without my faith in God. Oh I am there too - I pray all the time too. I read my Bible and have a devotional I read daily. If I miss a day, I can tell.
I had a lower dose of Gemzar yesterday as my platelets were 70 and other counts low,plus fighting this infection too. I bruise so easily, kind of scares me. So I woke up terribly sick to my stomach, and it's finally letting up. I got some fresh air and that always help too.
I haven't heard back on the foundation one testing. I'm keeping on them about it. My oncologist is on vacation next week. I'm sure keeping him busy with all these new questions. It's the insurance company that only wants to pay for Ibrance as a first line treatment- It's tough enough having to deal with cancer.
He found a clinical trial for me 4 hrs away. It's a phase one study and I just got the info today. I have to be off chemo 4 weeks.
I will be praying for you and your Dr appt March 8.
I can have radiation for my liver, and I guess they get good results. I've had a few treatments for pain with great results. My radiation doctor is aware of what is going on, and if need be I can get in to see him in a matter of a couple days, it's all that "mapping" that takes time.
I need to get back to carrot juicing!! I'm adding a beet to mine today.
Take care. sandy
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new and scared stage 4 ILC
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
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