Learning and surviving

[Kathyinmich]

Diagnosed with metasized breast cancer. In the bones for the last few years. I am on ibrance and femera. Working well but low hemoglobin and Chemo fog. Otherwise doing great. I am new here and hoping to learn from you. Thanks and have a wonderful day. Kathy

[Kats3]

What type of BC do you have? I have lobular and also have bone mets. Have you had any other treatment or have you always been on Ibrance and Femara? I was first on Arimidex, then Tamoxifen followed by Faslodex. None helped me that much. Am on Xeloda now and doing well on it though I have a feeling that I'll be changed to your regimine soon. I see my Oncologist once a month and he checks my tumor markers each time. They've been climbing the last 2 months. Time will tell. Welcome to the site! Kats3

[Kathyinmich in reply to Kats3]

I had ductal. Just radiation at first and put on tomoxifen. Nodes removed. Early stage one. Then I had hip pain that I put up with for about 9 months blaming it on on issues. Found out it traveled to the bones. More radiation. Then first was capacitabine that worked for about a year and a half. Bone scans, cat scans and pet scans. Now on femera and ibrance for almost 2 years. So far so good. Thank you and wishing you the best. Kathy

[Partia]

Nice to meet you. I am also in femara (letrozole) and Ibrance since last July. I was diagnosed stage 4 last February after being stage 2B 15 hrs ago. The first oncologist I had last February gave me 14 months to live in May. I got a second opinion and they are much more hopeful. I'm doing pretty decently right now. I hope you're doing pretty good too

[Kathyinmich in reply to Partia]

Glad to hear you are doing well. My first doctor messed me up big time. Really glad that I found my new doctor. Best wishes to you. Prayers. Kathy

[Red1246 in reply to Partia]

I’m so sorry you were given 14 months to live! No idea why an oncologist would say that as it’s terrifying and does little to keep your spirits up.

I’ve been told by my oncologist, head of Dept, and believe her that survival statistics are just numbers and we can choose to ignore and beat them. So important to live our lives as normally as possible and remain positive as new drugs are being developed all the time and we have a good chance of living much longer than the statistics indicate. The mind/body connection is huge and I think it’s important we do everything we can to maintain a sense of well being and hope.

I was also stage 2 ten years ago and then had DCIS in other breast late 2018. Lumpectomy cleared all and then 5 months later a lesion on my spine discovered abd MBC was diagnosed. They relate it to the initial BC.

I wish you all the best! Red

[Partia in reply to Red1246]

I am still here. Still stable but have scans next month. Thank you and I hope this finds you doing well.

[Rhwright12]

Hi Kathy!

I was never on your chemo pills but I do struggle with the low hemoglobin. When I first went in my hemoglobin was 7.2 so I had a blood transfusion. Since then I've been taking Iron pills and B12. Some doctors don't like to recommend supplements and vitamins but they really help so I thought I'd pass that on to u...

-Blessings!

-Heather

[Kathyinmich in reply to Rhwright12]

Thank you. I have had two blood transfusions. I was first on xeralto for blood clots. He changed me to eliquis. I have not had one sense. I stay around 8.2. I will look it to that. Greatly appreciate it. Wishing you the best. Kathy

[marlayne]

Hi Kathy. Also diagnosed with Breast Cancer Stage 4 with mets to the Bones (March.2016)..almost 1 year ago. Survivor of Stage 0 DCIS for 20 years. Invasive surgery in 1996...Total radical mastectomy and 19 lymph nodes removed. No follow up treatment because the margins were clean and there was no need for chemo. Now I am on Ibrance and Femara plus Xgeva shots for bone strength and Neupogen after the 2 weeks of Ibrance since March and I am doing wonderfully. Last PET/CT scan 3 mos. ago...No active cancer. Hoping for the same news on Jan. 26 when I have the next PET/CT scan. I too suffer from Chemo fogginess and the neupogen shots (3 days worth after the last dose of chemo) give me excruciating bone pain. I take Oxycodone for the bone pain. Stay well as I intend to. Attitude, attitude, attitude. I am positive most of the time. Slip back once in a while, but for the most part I am doing great. Hope to connect.

[Kats3 in reply to marlayne]

Hi...Was wondering what the Neupogen shots are for.....??? I never heard of this drug. Thanks. Kats3

[marlayne in reply to Kats3]

neupogen is used after the 2 weeks on Ibrance . I start neupogen for 3 days to raise the blood counts. Ibrance lowers the counts dramatically.

[Partia in reply to marlayne]

I got neupogen and neulasta when I was on infusefl chemo. With Ibrancethough it's different. My white blood counts are lower but I don't have to take anything to raise them up. It's not the same and you don't have as bad of a reaction when you have low white blood cell count on ibrance

[Kathyinmich in reply to Partia]

Ok thanks for clearing that up for me. Hugs and prayers

[Kathyinmich in reply to marlayne]

I agree. Attitude is a great help. Seems we are on the same protacal. Although, I do not get the neurogenic shots. I had a lumpectomy and the margins were clean as well as the nodes. Wishing you the best of luck. Kathy

[marlayne in reply to Kathyinmich]

We are on the same protocol. It is working and I am thrilled. Wishing you the best as well, Kathy. Glad to have "met" you.

[Tap321 in reply to marlayne]

How low do your blood counts get? Do they not rebound on the 7 days off?

[Kathyinmich in reply to Tap321]

I have had two blood transfusions. One at 6.5 and the other at 7.3. Yes, the week off helps it improve. Prayers, kathy

[Partia in reply to marlayne]

I remember the terrible pain from nuepogen or nuelasta. Take claritan and advil for that pain. It works. You have to take nuepogen shots with IBRANCE??

[Kathyinmich in reply to Partia]

I only take xgeva.

[Presence1 in reply to marlayne]

Just read your entry from a few years ago. How are you doing now? Hope you are well.

[daf10]

Good to have you join our group Please feel free to keep us updated om your treatment. Feeling frustrated and sad where the place to go to for the support that you need.

[Kats3]

Hi again,

When my hemoglobin got low I had Procrit shots each week until the number reached the normal range. My blood was tested a day before I went in for the shot each and every week. I think I had about 10 or more shots but they did the trick! It was either get the Procrit shots or have a blood transfusion and I opted for the shots. That was a year ago and my hemoglobin has been fine since. Hope this helped. Kats3

[Kathyinmich in reply to Kats3]

Thanks again. So much information. The more we get the better. Kathy

[Warrior08]

What is inbrace

[Kats3]

It's an oral chemo pill. Kats3

[donnajean16]

Hi Kathyinmich!

So glad to find your post! I was just dx. with bone mets, started on Ibrance almost one week ago. Doing OK, a little nauseated and fatigued, but otherwise not too bad. Hoping and praying my tumors will respond by shrinking and going away!

Stay Strong!!

[Kathyinmich in reply to donnajean16]

I am sure they will respond. Prayers.

[Tap321 in reply to donnajean16]

It gets easier. My first week or two was the worst.

[monalbaki]

I have just started Femara and Ibrance 125 a few days back. The side effects mentioned on the leaflet are scary. My WBCs are already too low. What should I expect? Are we allowed Neupogen with Ibrance? I used to live on it during my 8 chemo sessions.

[Kathyinmich in reply to monalbaki]

I have been on that combo for about a year. My hemoglobin stays around 8.2. Other than that I have no side effects. I do not know about neurogen, sorry. I hope this helps and stay strong. Prayers. Kathy

[Red1246 in reply to monalbaki]

I believe the pre chemo injection of Neupogen is only used when the chemo is given via an infusion. I know of no one taking ibrance pills who has this injection. Wbcs will be low, particularly during week 3 into cycle and the week you’re off, but they can keep us off longer than a week without consequence to allow the wbcs to regenerate if they’re really low.

All the best! Red

[Meadesmith]

I am 19 months in, ibrance and letrozole. Added xgeva even though bone Mets are gone. Xgeva is great for bone Mets, if you have them, go to the site and read about it. Chemo is crappy. Fatigue is crappy. People say oh I wish I could take a nap everyday. Yeah it is not like that. Like passing out cold for an hour every afternoon.but I live super clean, eat whole food, supplements, exercise, sleep, destress,(therapist and massage). Was able to work for 15 months but it took every once of strength. Try different things for the fog, b vitamins, brain enhancers. Learn something every day to keep the brain flexible ( I study two languages). Juicing for the blood counts....It is all a piece, everything that helps moves your numbers up.

[Kathyinmich]

Thanks will try some f that.