Palbocicilib 2016

zarovka

I was newly diagnosed with breast cancer in January 2016. My cancer is metastatic ERPR+ (actually 3+, loves estrogen) HER2- breast cancer with metastasis to my liver. Nuclear grade 2. I have a 3cm tumor in my left breast with signs of cancer throughout the breast. All lymph nodes in left armpit are cancerous. I also have cancerous lymph nodes in my sternum and left clavicle. The 5-6 tumors in my liver are all less than 1.5 cm. Through the whole nightmare of the diagnostic process, the good news was that the cancer in my liver is not significant and does not impede my liver function.

I am complete my first cycle of 2.5mg letrozol and 125mg palbociclib this week. I figure I am a good candidate to start the Palbociclib 2016 thread, so here we go.

I am in generally good health. My white blood count, liver function tests and even my cancer markers are all normal. My side effects from drugs (things I did not experience before treatment) are mild fatigue, tender lymph nodes all over, poor short term memory, light sleeping, some nausea, occasional mild headaches and an occasional sore on the tip of my tongue.

Not all of these SE's can be directly attributed to the prescription drugs because I also pursue complementary approaches. Adjustments to my supplements, stress management and prayer have consistently reduced or eliminated any significant side effect so far. The fatigue and the short term memory loss seem directly tied to the Letrozol but I am not 100% I am having any side effects from the Palbociclib.

I have had a sore throat for over 6 months. The sore throat preceded my diagnosis, but almost certainly not my cancer. I am interested in whether anyone out there has figured out the cause and the cure to this. I am hoping an anti-inflammatory diet and care for my lymphatic system will help, but so far it is not getting better.

I pursue an aggressive program of complementary cancer treatments with my oncologist's knowledge. My oncologist is part of a research hospital that does not buy into integrative oncology generally. She does not recommend any complementary treatments. She does provide support to help me navigate drug interactions. I work separately with medical doctors who provide complementary treatments for cancer and integrative oncology.

Inflammation almost certainly drove the growth of my cancer for a couple of years. My diet is a strict anti-inflammatory diet with no refined carbs or sugar. I am continuing to study diet and cancer, but basically I treat everything I put in my mouth as medicine.

I pray and meditate at any sign of any stress or pain or fear. I spent more time praying than anything else early on. I get support from a spiritual guide and my friends with a stronger spiritual connection than I do. I could not get out of bed without the prayers and support of my friends, family and guides.

I jog and walk several times a week, lift weights, practice a vigorous form of yoga. I fight mild fatigue and nausea to keep up this level of activity but the effort pays back in energy, good health and reduced side effects. This is consistent with data reported by the American Cancer Society.

I take the usual supplements (fish oil, D3, curcumin etc) but I am still working out what I really need on that front.

Finally, I am researching complementary approaches to aggressively fight the cancer that are not FDA approved. The current candidates, in order of priority, are alpha-lipoic acid, cannibis and artemesinin. I am reading papers and meeting personally with people who have pursued these treatments. I will be working with medical doctors to pursue the treatments. However, this space is tricky, researching and interviewing doctors takes time and care. And then I still need to select between the treatments; I will not pursue more than one at a time. I got opinions from 4 oncologists before I chose one, don't expect this process to be any easier.

I am interested in direct personal experiences with alternative strategies good and bad. I am happy to discuss this privately.

I will document my experience with both alternate treatment and Standard of Care (palbociclib/letrozol) here as I go.

At the moment, I sip cashew milk infused with turmeric/ginger/cinnamon for the first time. It has taken the edge of that fatigue/nervousness that letrozol seems to cause. Hmm... maybe I have a good nights sleep ahead.

So far doing pretty well. Wish you all the same and I hope to hear from you.

>KNC<

phrogger78

I just started Ibrance/Femara this week. I have a single mass in my lung and a 1.4 cm tumor in my right breast, but my lymph nodes all through my right axilla and my sternum are all involved. I am interested in complimentary treatment and would consider cannibis, but I'm in nursing school and it's not allowed at this point. But if there is ever a point where I leave school or the nursing profession, I'd be all over it.

zarovka

Erin -

It appears we went through the diagnostic process at about the same time with a very comparable outcome. For me it was the most difficult 8 weeks of my life. However, I am back on my feet and focused on getting better. Very interested in your experience and perspective, particularly with your nursing background. Thank you for responding to my post.

I am starting the third week of my first cycle on letrozol and pablociclib. I feel pretty good. I started the letrozol a couple weeks before the Pablociclib. I had some headaches, nausea and malaise the first couple weeks on letrazole, but it has abated. Maybe I am getting used to the radically lower estrogen and and or getting better at stress management, diet and exercise but I feel pretty good. I've made a lot of changes and I think just cutting refined carbs is an adjustment for the body that can cause or exacerbate symptoms. I can't totally blame the meds for the SE's.

My lymph node involvement is about the same as yours. I am doing a lot of weights, jumping jacks, trampoline and running to keep my lymphatic fluids flowing as best they can under the circumstances. I had a massage from someone who specializes in the lymph system on Friday, I felt better on Saturday and today than I have in a long time. So, I will keep pulling that thread over time.

Cannibis is on the list, but #2 after alpha lipoic acid. I live in NM where the treatment was developed. Cannibis is also legal for medical purposes here, but I don't want to get stressed out and distracted researching and pursuing too many things.

I am get a pretty clear signal from my angels that diet, exercise, stress management and time with my family are fundamental to getting well. But I know I will get to the other approaches as i need them, when I need them. First, I am getting settle into letrozole and pablociclib and the basic lifestyle changes. The fact that I feel better now than I did two months ago makes me feel optimistic I am least doing something right.

May your first cycle on pablo go as well as mine has.

>KNC<

zarovka

I just got my pet/ct results after 2 cycles of palbociclib plus letrozol (about 10 weeks total) and an aggressive complementary protocol including supplements, off label prescription drugs and IVs as outlined earlier in this chain. I scan the board for other people's progress with this drug combination, so I thought I share mine. In particular I am wondering how the response I am getting to the letrozol/palbociclib combination compares to others on this protocol with no previous treatment. I am doing complementary therapies, some of which have rougher side effects than the palbo/letrozol alone. So I am wondering if they are helping or if this is just what palbociclib/letrozol does in the first couple of months, if it is your first line treatment.

All my tumors are smaller. When I estimate the volumes of the tumors from these measures, my tumors are on average less than half the size the size they were previously. Not the miracle we are all praying for, but I'll take it.

The hypermetabolic activity of all tumors is low to not present. The most active tumor is still the primary tumor with an average SUV of 2.2 and a max of 3.4 which they call mildly hypermetabolic. Hypermetabolic activity of less than 2.5 SUV was considered normal (not hypermetabolic), yet my PET Scan report calls an SUV of 2.2 mildly hypermetabolic. Confused about the definition of mildly hypermetabolic.

Primary tumor in left breast.
Primary tumor was 4.2cm x 2.3 cm. currently measures 3.7x1.5 (slightly decreased).
Average SUV of 2.2, Max of 3.4. In early pet scan SUV max was 7.

Level 1 Lymph node.
Index node was 1.8x1.1, now measures 1.1cmx0.8cm
Mild but unquantified hypermetabolic activity

Anterior Mediastinal Lymph Nodes
Index Node was 1.7x0.9cm, now 1.4cmx0.4cm.
Mild FDG Activity. Is there any difference between mlld FDG activity and mild hypermetabolic activity?

Pre-tracheal lymph node
Index node was 1cmx1cm now .9x.6cm.
Size of node to small to characterize SUV with PET scan

Peri-fissural node
Node was .7mm, appears unchanged.
Size of node to small to characterize SUV with PET scan. (wondering if this is even cancer. I understand these are common and usually ignored in people without cancer)

Hepatic Lesions
Segment V lesion previously 1.5x1.1cm, now 1.1cmx1cm
Hepatic Dome lesion was 1.4x1.2cm, now 0.8x0.8cm
Not overtly hypermetabolic.

Suspicious Stuff
Lucent lesions within the manubrium and sternum with mildy incrased FDG avidity. My bone scan was clean. Do I believe the bone scan or the Pet Scan?
A left supraclavicular node is avidly enhancing. What is the difference between avidly enhancing and mild hypermetabolic activity? Does that mean it is picking up the iodine contrast, but not the radioactive glucose?
Small but hypermetabolic right thyroid lesion, slightly suspicious for primary thyroid malignancy. Oy. This would be a second cancer. How common is this false positive?