Single parent looking for some answer

I am a single parent , going through the fight for a second time. This second time I was diagnose with mastastic , carcinoma , infiltrating stage 4 breast cancer.

I'm presently on taking ibrance 75 mg, letrozole and 4000 mg vitamin D. During taking a higher dose of the ibrance I had an episode of retina detachment and some bleeding in the back of the eye. The eye has healed after emergency surgery. I have lots of bruises all over both legs. Going through tightness in the chest and back. Had liter and a half of fluid removed from my lung twice. This last test didn't show that there was enough fluid to be remove but I still have the same kind of pain when walking long distance.

43 Replies

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  • I am sorry you had to go through all that. I hope the 75s work for you!

  • Just going through lots of test

  • I'm so sorry to hear about your troubles. Please know that people care about you and that this is a very difficult disease to live with but it's worth looking for the right treatment. You've been through so much but hang in there. My breast cancer was discovered after my back broke from hiking and falling into a hole. The breast cancer had eaten through two vertebrates that had to be surgically removed. I felt so much relief after the surgery. Then radiation treatment to my spine and hip left me with a hole in my right hip. So I was wearing a brace around my torso 24/7 and walking with a cane. Finally got bone cement filling in my hip and I'm walking without the cane. My oncologist got me on Herceptin as I am HER2+ and letrosole. The cancer disappeared after four months but the surgeries left me with a funny walk. I'm just grateful to be alive today. I pray that you'll also heal and receive support from us on this site.

  • Praying for you

  • Where had the cancer spread to your lungs? Sorry you are in pain and having to go through this. Hope you find some relief soon

  • So sorry that your are suffering and have had to go through surgery and all I am crossing my fingers that the higher dose of Ibrance is helpful and alleviates your lung problem Please keep us posted about further developments in your treatment As always we are here to support you Feel free to drop us a line every now and then

  • Hi, Dealing with serious cancer like this has got to be double or triple rough when you are a single mother! I raised my daughter mostly alone and remember how difficult that was.

    The one suggestion I have for you about the cancer is to get a second opinion from a breast cancer specialist oncologist if at all possible. Your own onc should be okay with that and help

    you get an appointment scheduled. I can also tell you that I had to go off Ibrance due to side effects to my lungs.

    I have been living with metastatic breast cancer that is invasive for 13 years, always in treatment but stable most of the time. I hope you will have the kind of good luck with treatment that I have had.

    Sending warm thoughts, prayers, and cyber hugs, Pam

  • What were you're lung symptoms?

  • Getting out of breath with very mild exercise! But keep in mind that I am 70 years old (will be 71 in less than two weeks) and have had a badly fractured ankle (not related to bone mets) that kept me off my feet for 10 weeks, and have been dealing with this blasted cancer for 13 years! So I am worn down, tired and in the worst shape in terms of my muscles ever. Pulmonologist diagnosed Interstitial Lung Disease, and I suspect Ibrance only as it has been reported to cause other lung issues.

  • I would like to know what course of treatment have you received ?

  • Keep in mind that every cancer is unique and that no two people are going to

    respond in the same way. I was diagnosed with mets from the get go, an invasive lobular bc with symptomless bone mets. Biopsies showed that both the primary cancer and bone mets were E + P+and her2neu -. I was initially put on Femara and Zometa. I got almost 5 years from Femara and then was switched to Faslodex after some progression. I am allergic to Zometa and had to have a half dose with pre meds and extra infusion time and so as soon as Xgeva was approved by the FDA, I switched to that. I had another minor progression about 16 months ago and Ibrance was added. I stopped it after developing some breathing issues. I was taken off the bone drugs (Xgeva) about 3 years ago as my bones had become brittle. I may go back on it some time in the future, probably every alot less often than monthly.

    I am very fortunate to have an obviously easily controlled bunch of cancer cells I also have other family members who have done exceptionally well with cancer and my onc and the genetics person I spoke with believe my family has a gene that helps fight cancer, but doesn't protect us from getting it in the first place.

  • Hi PJ, your cancer dx is similar to mine, being that i also have ILC, and had bone met from the jump. I had a R mastectomy, the tumor was quite large, at 8.8cm. I was diagnosed years after you, so i started with Ibrance 125, Femara and Xgeva. The drugs appear to be keeping the monster at bey. I am Just one year post surgery and on the drugs. I was wondering how you are doing? Do you have any inside for someone like me? You mentioned progression, how did they see the progression? I study my labs, and also my PET scans, and in as much that the labs are all over the place due to the drugs, and the PET shows sclerosis due to the bone mets "healing" nothing is ever normal. Any advise or invite would be greatly appreciated. by the way, I am 55 y/o (54 when diagnosed)....

  • Hello.

    Do the doctor's believe that Ibrance caused your eye problems? And also the bruising on your legs? The biggest side effect that I've read about Ibrance is that it causes low white blood counts. I may be put on Ibrance soon myself and am wondering about what other side effects there are with this drug. My doctor said that the dosage for Ibrance starts with 75 mgs, then goes to 100 mgs, then highest is125 mgs.

    I am so sorry that you're going through this! How many years were you Metastatic free?

    I'll keep you in my prayers. We're all rooting for you!

    Try to think as positive as you can that that you'll get over this hurdle. I hope you're taking pain meds. Also try to eat healthy and/or take good vitamins to keep your energy up. That's been my problem... fatigue. I'm taking a good multivitamin along with others in order to fight low energy.

    Wishing you the best! Keep us posted. Kats3

  • My doctor started me with 125 mg then after some issues with it, he took it down to 100mg. This is when the issue with my eye came about! The eye specialist had to clean up lots of blood from in the back of my eye along with the retina detachment . My oncologist then took me off the ibrance because as soon as I knew what was the issue I told him. Now that he saw some of the protein from the cancer cell in my blood he put me back on the ibrance but now I'm taking 75mg every night.

    Now I'm going through issue in my stomach and tightness in my chest and back. Since there is not enough fluid to be remove from around my lung, he is putting me through like a full body image testing.

    Just did my abdomin and my spine area. I have like 3 other section to do.

  • _fight_,

    I am sending you much positive energy that those scans will help your doctor come up with a good plan of action.

    Hope you feel better soon. Keep us posted! Kats2

  • My friend has that happens in both her eyes. They probably took you off Ibrantz to help your eyes healing process. I was taken off when I got an infection in leg from my chihuahua scratching my leg. It helps heal since Ibrantz takes your white blood count down so much. Not a doc but, the great help Ibrantz does for you're numbers is well worth the side effects. Was the water on lung from cancer, a bad winter cold?

  • No

  • 12 years ago when I was diagnosed it was not mastatatic. I had lumpectomy first then a mastectomy then tried to get reconstruction but my body rejected it and I caught an infection. Got treated for a year and then I was in remission

    2015 I had been going through lots of different pain, going back and fort to the doctor. After a baseball game with my youngest tried to go to sleep and couldn't . Went to my doctor with breathing issue, took a X-ray and the doctor saw 90 percent of my lung covered with fluid. Was admitted in the hospital , got the fluid removed then did a X-ray and that's when they did biospsey and was diagnosed with mastatic carcinoma infiltrating breast cancer stage 4

  • Thank you wondering I have some beginning symptoms of odd breathing now after many types of chemo, radiation, and different pills. Not trying to diminish anything you struggled with.

  • My breathing problem was not from any medicine that I was taking because the only thing I was taking was my thyroid medicine and my blood pressure pill.

    Before that I had issue with the level of the thyroid medicine. I do not have a thyroid gland that's why I'm on those medication . My primary care doctor had messed up my dosage because of taking it high slowly she took the level too high too fast .

    I'm not saying this was what caused my breathing issue but those were the only medicine I was taking

  • I am so sorry! This cancer is so hard! I'm so glad I found this web site! It helps to talk to people who are going through the same thing. The ibrance stopped working for me! I have effects from all my meds I think. My hands shake really bad, I'm tired all the time and most days just don't feel good! Stay on top of everything and tell your doctor everything!

  • I started with 125 mg of ibrance and some side effect that I had my oncologist took it to 100 mg. After that was when the situation with my eye, that's when my oncologist took me off the ibrance. Then some protein from the cancer cell was found in my blood so I was placed back on the ibrance 75mg .

    Now I'm having bad pain in my abdomen and tightness in my chest. This is why I'm taking all these different Ct scans and MRI test with contrast and without .

    Just pray that it tells why and what's going on because I'm tired of being so oncomfortable.

  • Was it like plurisy? I did not have that on my lung. I did get the bruises. And my counts down not retina detachment. Did you go down in dosage? I did not do well in 14 days on high dosage so I was always on lower dose. Cancer got smarter and I have had to since 2 years on it, change to another chemotherapy oral drug cause it's back higher in spine. First chemotherapy over Xmas put me through whirlwind of side effects perhaps all there was. But, 3 months and markers only went higher. I have swapped to new one and in first month.

  • While on for the 2 years my counts were lowest

  • Tera987,

    What was the name of the other oral chemo drug that you were put on after Ibrance? What are you on now?

  • I'm on letrozole and the ibrance

  • I was put on Affinitor and Letrozole for 3-1/2 months had every known side effect and my numbers steadily rose. Stopped that and now am on Xeloda.

  • Hope your course of Xeloda works. I have a few side effects from it - on cycle 8 at 2500mg at present. Mostly a bit of dizziness some mornings, an odd tightness around chest neck and behind lower jaw when working bent over or walking up hills. It wears off toward the end of each cycle and am mostly ok during the week off. No hand foot syndrome apart from a slight occasional numbness in hands but was given seriously sticky lanolin cream to use as often as possible so maybe that helps. Perhaps the most uncomfortable is the hot flushes and sweats and general slight fatigue but all bearable. Only real concern is while the CA125 is going down and met shrinking CEA going up and nothing shows on any scans! Have read about so many on Ibrance which seems to work for many but we don't seem to have it here in South Africa

  • When they found the fluid on your lung what were the symptoms?

  • The symptom was that I was having problem breathing. Could barely talk by the time I got to my doctor

  • Praying for you. Fighting metastatic cancer is difficult. But we have to go on

  • The cancer spread to my lung as well. I would be able to pass along some potentially useful information, but I'm not sure about the spread to your lung. Do you have any tumors in your lung? Or has the cancer spread to the space between your lung and the outer lining of your lung, which would be the pleural cavity? Or both places? Is the lung the only place of spread (my cancer spread to my brain, as well). Sending good vibes that the adjusted dose works for you.

  • I think it's the outer space of my lung.

    I've taken so many Ct scans and MRI in the last two weeks

    One test shows small pockets of fluid around my lung

    Should be seeing my oncologist soon

  • I lift you up in prayer.may all of the things that are unhealthy/crooked in your body be made whole/straight .As your email name implies keeeeeeeeeep on fighting sister/warrior, our God will do the rest. Prayer and faith equals victory! ! !

  • Thanks

    Ok after all my test, I taught I was going in so my oncologist can explain to me what all those pics show and what it means for me. Instead I was told that he wants me to see a rediation oncologist!

    What does this mean I don't know!!

    Only god does so I'm asking god please continue to look over me!!

  • Hi -fight-,

    Your Oncologist owes you an explanation of the results of ALL your tests and scans. Then he can explain why you need to see a radiation oncologist. That's what a good Oncologist does and you should not expect less!

    If this doesn't happen, then you need to ask the Radiation Oncologist to go over your scans with you and explain what he plans to do and why. Don't go into anything blindly. You need to speak up and tell these medical 'specialists" that you're scared and don't know what is going on, and to please explain things to you clearly. That's the least they can do.

    So, -fighter-, it's time to fight! Make your needs known! And bring a person with you who can help express your concerns.

    I'll be praying for you. Prayers are powerful. Keep us posted as to what goes on. We're a caring bunch! Kats2

  • Did you visit the radiation oncologist? God bless you .

  • Not yet

    Just got an appointment for next Friday

  • Thanks, that's what my daughter was asking him. He told her that is why he is referring me to the rediation oncologist. To check why I have the pain I do.

    I have an appointment with the rediation oncologist next Friday . A consultant appointment, they said they will check to see why I'm having pain.

    I am going to ask to change my oncologist, he never explain

  • Oh my oncologist told my daughter my breathing problem might be from scar tissue around my lung from the infusion that was done

    Crazy

  • -fight-,

    I thought you wrote that your BC metastasized to your lung? You had a biopsy, fluid removed, and were told that now you were Stage 4. Did your Oncologist tell you that or someone else?

    If you were diagnosed as having BC Mets to your lung, I find it incredible that your Oncologist would tell your daughter that he thought your breathing problem might be from scar tissue from an infusion! That's crazy! Yes, I'd be looking around for a new doctor.....like yesterday! He's not giving you proper information and seems to be pushing you off to another doctor instead of dealing with your questions as he should be.

    I still say that if you had more scans or x-rays done, your doctor needs to tell you what the results are. As a matter of fact, you should be getting your own copies of the results of each and every scan that you had done. This shows what the Radiologist found when he studied and interpreted each scan. I have copies of the results of each biopsy, surgery, and scan that I've had done. My doctor hands them to me. If he forgets , then I tell him I want the Radiology reports and he has his staff make copies for me. I put them in a file at home. They can be difficult to read as they have all these medical terms in them, but they do state what is seen on your scans. It states it plainly at the bottom where it says IMPRESSION:

    Of course your Oncologist should be explaining what the tests show and not leave you and your family in the dark.

    I can't believe that you have to wait a whole week to see a Radiation Oncologist to find out about pain that you're having in your chest and abdomen! What kind of health care is that? Sub par, if you ask me. I don't like hearing stories where patients aren't treated as they should be.

    I wonder if the Oncologist would make his wife, sister, or mother wait for over a week to find out why she's in pain? I seriously doubt it! You need to be seen in a timely fashion.

    I feel badly about the situation you're in. Seems you're not only fighting your cancer, but also fighting to receive answers and explanations.

    I'll say prayers that you get the care you so dearly need! Kats2

  • Hi I'm Julie 59 year old and Great Grandma to a little 3 year old. I was diognosed July 2016. You always find the bright side and mine was that this didn't happens when my kids were little. You are so strong Blessings to you.

  • Hi -fight-,

    It's been over 2 weeks since you wrote. Do you have any new information about your treatment and what the Radiologist said?

    Wishing you the best! Kats2

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