Ibrance (Palbociclib)

Chicagoan

Blume-I experienced muscular pain particularly in the thighs and calves from the Letrozole/Ibrance combo. What really helped for me was yoga to stretch out the sore areas. I know a very good teacher in Berlin-if you want her name message me. Glad that the Ibrance combo is working well for you otherwise.

nonahope

Blume....My thought is that your pain is from the Zometa infusion. I was in pain for 2 days after my Zometa infusion. I was forewarned by my oncologist that I would most likely have pain for 2-3 days after the infusion...and I did.

Hope

Blume

nonahope I did wonder about the zometa, I just thought otherwise as it was my 7th infusion and I only ever had problems the 1st time. I certainly didn't drink as much water yesterday as i usually do when getting the infusion, just a lot of coffee. Maybe this didn't help.

Chicagoan thanks for the suggestion, I will try some gentle stretches for now to help and will certainly be in touch if I need the name of the teacher.

cive

Blume, I know some folks have had bone pain from Zometa infusions, but never heard of that side effect from letrozole, unless it was just a muscle cramp.

nonahope

Blume....I've only had one infusion of Zometa. Unfortunately, my creatinine level elevated and I haven't been able to have any more infusions...yet. Maybe, soon. I know it's an important part of the treatment. And, yes....I was told emphatically to drink lots and lots of water - so maybe that had something to do with your pain.

Hope

Iwrite

Z - Hope the scan went well and the results are good! Thinking of you all today!

bigbhome

Blume, are you taking magnesium? If not, you should be. They really stressed that with me. I take 800mg a day. Cramping does happen on this combo.

Claudia

Blume

cive I was checking the side effects list of letrozole and it said bone and muscle aches. It's not cramping, it's a constant ache like I overworked the muscles. Sadly can't say I have!

Nonahope hope your creatinine levels are ok soon and you can get another infusion. My first zometa infusion totally knocked me out for a day and made me ache so bad, but from the second onwards it was totally fine. Hopefully will be for you too. I was always told to drink lots and lots of water too when getting it. Next time will do just that and lay off the coffee!

Bigbhome I haven't been taking magnesium, thanks for the info I must look at this.

Nkb

I was advised to get my Zometa infusion over 30 minutes by 50sgirl instead of 15 which I think helped. I also got a lower dose this time due to decreased kidney function. Fluid before and after and I take Tylenol since I got a fever the first time I had Zometa. I stretch a lot.

I get cramps also and am not on the letrozole. I thought it was Ibrance esp day 3-4.

I got lots of joint issues when on the Arimidex for the first few years. yoga!

zarovka

Well, rats. My scans show clear progression. A bit in my sternum but significant progression in my liver. My scan in April showed no hypermetabolic activity in my liver. The scan yesterday shows multiple points of elevated SUV ...

Multiple intrahepatic lesions are identified with maximum SUV of 6.8. ... Probable porta hepatis adenopathy maximum SUV 3.7.

I had a treatment change in the works anyway. I have had it with anything involving hormone suppression and I have been plotting a change for a while. New treatment starts in about a week and half. I planned this scan close to the start of the new treatment to provide a baseline ... I was actually worried I would be NED and there would be no real baseline to show if this new treatment was working (where do you go from NED?). Be careful what you ask for, as they say.

I'm okay only because I have a plan, treatment dates scheduled, airplane tickets in hand. Thank God.

>Z<

PatgMc

Z, I'm going to join you in that "Rats!" I wanted so much for you to be NED. But this I know > You are a warrior and I expect your new treatment plan to get busy on those mets. Please know that I'm praying for everything to begin without any problems, that your body responds quickly and that your side effects are minimal. God bless you, friend.

Cure-ious

Z, I am so sorry!!! But I know that somehow you really knew that it was time to get off the hormone suppression ride!! You do have a super plan and thank God you didn't take my advice and just go for the vacation!!! However, you do need to get a biopsy PRONTO, to see what you are dealing with now.

I assume everyone follows Barbara Bigelow's blot (barbigwire.com)- she was diagnosed right before me with MBC, and took anti-hormonals for a whole year before they finally got the correct liver biopsy to show that she actually had triple-negative cancer, for craps' sake, and it was progressing all over the her body like wildfire during that time. She then got put into a trial with immunotherapy (alone or with a drug, I forget) and she had a port installed. The port got a slight infection and WHAM! that was enough to take her straight into the hospital with major sepsis for four months, she nearly died- a super-hight fever that could not be controlled (but you just knew the fever was killing the cancer like crazy during all that time), major organ failures all at the same time as the immune system went out of control and started attacking the healthy cells. Fried her adrenals. They realized it was the immuno and counteracted them with steroid shots. Gradually things calmed down, she went out of crisis and was very lucky to have survived. And now a year and a half later there is no evidence of disease and she is on nothing at all!!!

You need to really know and feel and understand that an incredible result like that is truly possible for you, and all of us especially the worse cancers are the most mutated and respond better, ironically- but none of us are going to get any kind of cure on Ibrance-Femara. We need the big guns. You're just going to go try it first.And if it works, I am going to go right behind you, no way I leave this planet without getting some immunotherapy. And if it does not work, there are a bunch of other kinds, some trials combining two immunotherapies, though these have more side effects, but they work a lot better!

I still cannot believe that you already had looked over and picked out a plan and had tickets to go do the next thing. That is CRAZY!!! Did you really know it was time?!! Just by the time you get the Ibrance-Femara drugs washed out of your system, you will be treated, and it will be obvious from the scans what the response is. Expect it to take a bit of time, but there is no way you won't be getting some benefit. And if you are a really big responder, they take you off immuno and watch you, if it comes back you just go back on the immuno and respond again, you don't really get 'resistance' the way the body does to drugs.

I spoke today to a friend who has a paper coming in Nature, where they found that a drug that affects the circadian rhythm kills cancer cells (cancer cells have no circadian rhythm, and if you restore it with the drug, the cells die!!)- including MBC- they are already making different versions of the drugs for future clinical trials, and will test them together with immunotherapy, first in mice. So big stuff like this is coming out all of the time, and the techniques you need to try them out are getting faster and faster to do--, our goals are just to keep on top of the cancer so we can be there to try the next wonder therapy.

Even as you are keeping it so together as always, I'm sure you are still also in shock,

peace and love, just try to keep calm and practice the zen thing, ahead of your next and much more powerful treatment...

Nkb

Z- I am so sorry about the progression, and very relieved that you have a plan. Something inside you knew a new plan was needed which is an amazing connection to your body. I am hoping for a strong response by your body to the new meds!

Faith-840

Z, I'm so, so sorry to hear your news. I know you will be okay since you are such a fighter and an advocate for yourself and you've done major research for just this day. Prayers that this is the treatment that works for you for a long, long time. Please keep us posted on your progress here or on a new thread. Maybe you can start a new thread for just the type of immunotherapy you will be having. I know we will all be interested.

I certainly understand your wanting to get off the hormone suppression. With this Ibrance break and only on letrozole, I still feel like crap.

Good luck with this new treatment and please let us know how you're doing. We will all miss your valuable research, and your always cheerleading spirit..

Hugs and prayers,

Faith (in the future).

zarovka

Cure-ious.

I like to think of myself as omniscient, but if I was I probably wouldn't have waited 5 years to get a mammogram when I was 50. However, I am a planner. I have been preparing this punch in the gut for months. Thank you for taking time to discuss the frontiers of MBC treatment, your constructive skepticism and all in support. I'm as ready as anyone can be to find the beast is on the move.

>Z<

zarovka

Cure-ious - The case you described is an example, in part, of the abscopal effect. fighterm has been posting on the topic on Inspire. It is basically when dying cancer cells trigger the immune response. It works best with radiation. I have a friend who I believe experienced the abscopal effect after SBRT radiation. The whole thread on inspire is interesting but here is a case report similar to your friend.

"Abscopal effect of radiation on lung metastases of hepatocellular carcinoma: a case report"

External-beam irradiation, with a dose of 2.25 Gy per fraction, was performed using an antero-posterior parallel-opposed technique (total dose, 60.75 Gy). A computed tomography scan performed one month after starting radiotherapy showed a remarkable reduction of the mediastinal lymph node metastasis. In addition to this, we observed spontaneous shrinking of the lung metastasis, which was located in the right lower lobe and out of the radiation field. No chemotherapy was given during the period. There has been no recurrence of either the lung metastasis or the mediastinal lymph node metastasis during a follow-up 10 years after the radiotherapy. https://jmedicalcasereports.biomedcentral.com/articles/10.1186/1752-1947-5- 111

SandiBeach57

Hello Z, Wow. You had a feeling your body and energy levels were different I am sad that you have this shock. Will your MO order additional scans on that liver to confirm progression just in case the PET scan is false positive? Then a liver bx to check hormonals? I noticed your TMs showed a slight increased trend. How about your blood liver function enzymes? Until you get your T cell treatment over seas (think I got that right), what do you think your MO will try next? Ibrance and Faslodex?

Be brave. You constantly support us..now it is our turn. Lean on us. We understand.

Lynnwood1960

Z, sorry to hear that you've had progression , but props to you for being fully informed of your next steps ahead of time!

nonahope

Good morning...

Z....I, too am so sorry to hear of the progression. It's wonderful that you are in a position to travel afar for a different treatment. Financially, I could never do that. I do hope you keep us informed....your research has been valuable information -- although, I admit to not fully understanding a lot of it -- I'm still in that "learning" process and hope I get to the point of fully understanding what is out there for us. Wishing you the very best in your journey.

Hope

zarovka

I am skeptical of scans when they show a small change in size or SUV in an existing met; however, there are several new active tumors in my liver where before there were none. That is clear progression.

The biopsy question is very much on my mind.

The various entities involved lost the paperwork for my PET scan several times so that it was delayed 3 weeks. As a result I leave on Sunday for Japan, 3 days after the PET. I pondered options for getting a bx in 2 days all night long. I could make a phone call or two this morning but unless someone wants to do this biopsy on Saturday it won't happen. I'm fasting just on the off chance I can walk into my local hospital and get it done today, but that's is a long shot..

I could get the biopsy in Japan but I hate biopsies even in English. During my liver biopsy here, my heart slowed down to the point they had to give me a drug to increase my heart rate. I have a severe medical phobia which takes over during these procedures. I know I should get a liver biopsy but I sure don't want one.

I've asked the clinic in Japan whether the pathology of the new tumors effects treatment decisions and whether a bx is necessary. The first response I got back was that they prefer not to biopsy their foreign patients but if I can't get one here before I leave, they have some confidence that cfDNA testing (a blood test) will be able tell them what is going on. They are getting back to me on that.

I haven't talked to my local MO since seeing the results online, but her treatment protocol after ibrance/letrozol fails would be faslodex alone. Hormone suppression has been hard and is undermining my overall well-being. It is really just kicking the can down the road. IMO, there are only two strategies that could potentially give me years rather than months on a line of treatment and those are oncolytics and immunotherapy. Oncolytics involves unleashing engineered viruses on your cancer and is early stage everywhere in the world, so that leaves immunotherapy.

I would be on a plane to the NIH to be vetted for their remarkable suite of immunotherapy trials if I had not found a solid immunotherapy option in Japan in a clinical setting. I feel there are advantages to getting treated in a clinical setting, and my daughter is fascinated with Japan. So, I had immunotherapy treatment in Japan setup to start on October 2, regardless of what this scan said. The scan was intended as a baseline for the Japan treatment.

Thank you for your thoughts and support. I haven't told my husband or kids yet. You guys get it first ... because you make me strong for my family. Waiting until tonight or tomorrow. Today is busy with sports and activities. I host the JV Girls Soccer Team Dinner tonight, and I don't need my family upset while dealing with that.

>Z<

cive

Z, so sorry about the progression, but you did get 18 months on the Ibrance train.  Hoping you get at least 18 months on your second ticket.

Chicagoan

Z-Thinking of you today and praying you will have the strength to do all you need to do. So glad that you have your treatment in Japan already set up. Hoping that the immunotherapy heals you.

Cure-ious

Z- For the Japan immunotherapy, I don't suppose it matters what the biopsy results, and its just a month, so can't that wait until you get back? And maybe go on the faslodex until you can get in for whatever other trial you want, like Rosenberg's trial at NIH. I would keep the Japan trip off of my medical record if possible, treat it as the supplement you intend it to be, just in case it dissuades anyone from accepting you for a future clinical trial with immunotherapy here? How extensive is the treatment in Japan going to be?

Lillymillie

Z so sorry to hear about your progression. I do know however you are so clued in and if anyone can find the right treatment moving forward it will be you. I'm interested to hear reports on your Japan trip and how immunotherapy goes for you. You know we will all be on that plane after You!

PatgMc

Z, every time I see a mother set aside her fears to make a memory with her family I am in awe. I admire your tenacity in seeking new and better treatment for this breast cancer but I admire you more for your selfless love. The love of all of us in this community will follow you to Japan and back. We expect you to achieve full remission and write a book about how you did it! Safe travels and peace,

Pat

Txgatata

Z, haven't been here long but you were one of the first to answer my questions. I hate that you are having this result but glad you have a plan which is more than many.

It's hard to report good news after bad but I got my counts today and while my WBC, RBC and Monos were still low, my anc went up to 2.4. I wanted to post this as I have seen so many (including myself) that have been discouraged after the first month. But it's a known thing apparently that you can tank at first then recover. Also, my doctor said that if symptoms are tolerable and count not to low, the drug literature says to "push forward." Funny termanology for a drug company.

PatgMc

Good article on metastasis.

https://www.cancer.gov/news-events/cancer-currents...

Sadiesservant

Very interesting Pat. Thanks for sharing. So... if they can block the formation of the peri-vascular niche, could this stop the MBC from spreading to additional organs once it is detected? So much research with so much potential.

Nkb

Pat- interesting. The New Yorker article too, that was posted about working on the "soil" and not just the "seed". In other words the host letting the cancer embed-all the work is about killing the cancer instead of making a less nice home for the cancer to grow.

Lillymillie

txgatata- that is a good reading for your anc. Mine went dangerously low after first hit so I needed a couple of weeks to recover. Also I didn't make it through full 2nd cycle. After this it it settle and I am midway through cycle 6 which no major dips.

Good article Pat, I look forward to the article where they can tell us we have figured out all the treatments! I just realised I forgot to take my ibrance pill today. Z's news 'knocked me for six' earlier and it just went out of my head to take it even though I was thinking about cancer a lot yesterday! I will take it in a hour or so with my breakfast and add the extra one in at end if cycle.