Ibrance (Palbociclib)
Comments
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Valz, here's a chart that explains when and how to adjust the Ibrance dose, and also a chart showing the Grades of Neutropenia.
http://labeling.pfizer.com/ShowLabeling.aspx?id=21... Scroll to Section 2.2
http://www.phusewiki.org/wiki/index.php?title=CTCA... Scroll to Line 7 for ANC/Neutrophils
I'm very fortunate to be treated at UCLA. Dr. Slamon, who is the same office as my onc, Sara Hurvitz, was one of the creators of Ibrance, and UCLA has had patients on it (starting with trials) for about 7 years now. So they are as well versed as oncs can be on Ibrance. Some of the things I share here are comments they've made to me when I asked them the same question. That said -- it's a relatively new drug and each of us is individual, so in some cases thinking may have evolved since I asked the question(s), and/or your onc may possibly tweak something based on stuff I would have no way of knowing about your situation. All I'm doing is sharing what I've been told by those who did the trials and came up with the guidelines.
Great to know about the PAN foundation. Thanks for sharing that!
lissalou, have you had your thyroid checked?
Claire, thanks for sharing some of the sights of your trip with us! That palace is gorgeous!
Deanna
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Z - Congrats on the great scan results!
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Deanna... have they ever given you numbers of people who have been on it for 7 years? Like are we talking a few people? 10? 50? I'm trying to understand the % likelihood we could be on this for years. My oncologist told me, "You could be on this for years...." None of us really know of course, but boy it would make me happy to stick with this since I tolerate well and so far have had a good response.
I went to UCLA for grad school and lived in socal for YEARS. I would be going there in a heartbeat if I still lived there. I'm back in norcal now and am loving my medical care. But UCLA is top notch too.
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Hello ladies! I don't post much but I'm here on the boards almost everyday. Here's my 3 month scan update. Had CT and bone scans yesterday. Have been on Ibrance/Femara with Xgeva shots since May of 2015. The results of my scans this time were stable bone mets and a decrease in my lung mets! My counts have continued to drop so my onc is moving me to 75 mg of Ibrance from 100. I had wanted to stay on 100 as long as I could but hopefully I'll have continued good results on the 75 with maybe less fatigue. Other than fatigue I've had many of the side effects that have been discussed on the boards, and they seem to happen for 3 months at a time. They then go away and I get another side effect. At least that's how it seems to me. And they seem to occur at the end of my third week/beginning of week off. Below are the side effects I've had and what's helped me:
- Months 1-3 - strange headaches and watering eyes (ibuprofen and erythromycin eye ointment)
- Months 4-6 - upset stomach/stomach cramps (Pepcid)
- Months 7-9 - severe indigestion/gerd (more Pepcid)
- Months 10-12 - upper respiratory issues/sinus headache (Zyrtec before bed)
- Months 13-15 - leg cramps and watering eyes again (for leg cramps I tried the soap in the bed trick, no idea why it works but it does!)
Random possible side effect: strange pain/stitch/pins and needles feeling that travels up and down my right side/rib/shoulder area. I don't have much going on that side except for a small rib met and a shoulder mets. I have more extensive mets in my lower back/spine area so my doc said it could be referred pain from that. Since it's not that painful and just more "odd" feeling it could also be neuropathy. Who knows, but nothing showed up on my scans so I'll take it.
Other than that I work full time, just went to the beach for a week with my hubby and family and continue on with life as best I can. Getting ready to celebrate my 40th birthday next month and looking forward to many more. Prayers for all of us. And cheers. I'm going to go have a beer to celebrate.
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Zimmerwoman.... good for you! Have that beer! I turned 40 in late March.... my birthday gift was a Stage IV BC diagnosis. Sigh. But I too am responding on ibrance and have reason to believe I will see my kids grow up. What a surreal journey this is. Prayers to you and everyone. Remember to feel grateful and lucky that we have options for treatment. This is important. Sending healing thoughts to all.
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Nice job Zimmerwoman!
carol - I have had nasty burning in my breast and in my armpit on the side where I have the tumor since I started treatment. I have had this burning, sometimes intense, while my tumors SHRINK. I may have said this before, but I mention it again because it is unsettling and other people may experience this. Apparently it can be a sign of healing. I think it is the mammary glands that have the sensation.
Naniam - no pneumonitis here. By what reasoning does your pulmonary doctor feel that it is Ibrance? Certainly pneumonitis has other causes. Has that been ruled out? I would get a second opinion from a different pulmonary specialist before abandoning this treatment. we don't have a lot of good options. Smart, well trained, well intentioned doctors will disagree. Ibrance is still experimental. Consider reduced dosing as artist has.
Lalady - YOU are my hero. Now I too can admit I have had to wash down my Ibrance with a Cabernet on this trip. I am on the train from Seattle to Vancouver. So pretty. Will bike in vancouver in the afternoon.
Vaz - Just departing from a fantastic 48 hours in your state including a visit to your great cancer center in Seattle.
Artist - Good job exercising AND resting. The rest afterwards is where you really get the healing.
Lissalou - Nice results. I also started in January. Just got my scan in July and had similar results. Cannabis Oil, if you can get it in your state, is fantastic for bringing back a healthy appetite and taste. I got very thin the first three months with the same symptoms, Cannabis oil fixed it completely. A healthy weight is very important.
I have overcome debilitating shakiness and fatigue on this treatment protocol with Claratin/loratadine and regular moderate exercise. Just met with the fourth conservative MO to tell me there is no evidence that loratadine should work, but no contraindication in taking it. I choose to take it.
Several people here, including me, adjust their Ibrance protocol to ensure they enjoy their vacation. Being happy and with family is by far the best medicine.
My memory is just terrible. Can't find words, can't remember names. Confused my daughters music teacher with the wife of a colleague only last week. I hope and pray it is the Ibrance/letrozol because I only just got through watching alzheimers take my mother brain cell by brain cell over 7 years.
rpoole - If you read this thread there are many people who have responded quickly, but doctors are usually seeing response in the 6 to 12 month time frame. Looking forward to hearing about your continued success on this drug.
Clinical studies have seen little difference in survival outcomes between stable mets and disappearing mets. The stable mets are more often then not just dense dead micro-calcification. IOW you can be responding even if the CT scan is picking up something dense.
All - I met an oncologist with Fred Hutchinson Cancer Center in Seattle yesterday. Here are some notes.
I had metastasis to my liver and probably my bone. My CT scan from last week shows that I no longer have evidence of metastasis disease. My primary tumor and the impacted lymph nodes are still visible but smaller. The question is whether to do surgery or radiation to get rid of them if the primary tumor. I was diagnosed de novo, so I have had surgery yet.
She said that the few clinical trials that support surgery are weak in her opinion. She feels that the interesting clinical studies going on involve using radiation to stimulate an immune response in combination with immunotherapy. However, the current studies are for people with bone mets and that does not correspond to my situation now. Basically, she treats metastatic disease systemically whether or not there is CT evidence. I don't have extensive metastasis, but can't really be considered oligometastaic. So that is important context.
She said that Faslodex, possibly with Ibrance, would be a likely next line of treatment if I had shown progression. Beyond that there is Afinitor and 7 or 8 lines of chemo available. She was trying to say that I have a lot of options and generally paint a rosy picture. However, I remain concerned about my options after Ibrance/letrozol. The average time to progression using Faslodex as a second line treatment in clinical trials is still less that a year, I believe. FDA approved second line treatments are still an adventure for the brave of heart. Chemo and Afinitor can be tolerable but can be hard.
She did say that she has been very pleased with outcomes on Ibrance/Letrozol and the pipeline of potential new drugs is robust. I forgot to ask her about the drugs in the pipeline that she is seeing. (Grr. See comment on memory issues above. So frustrating.)
She said that 90% of patients who are diagnosed with MBC de novo respond to their first line treatment, so she was not surprised that I responded. But did say that within the group that does resond, I am having an excellent and fast response. She commonly sees a reduction in tumor size for up to 12 months. She confirmed that patients with stable tumors and shrinking tumors have very similar responses as measured by the amount of time people stay on a particular treatment and on survival.
I probed for strategies to reduce the side effects. I started with letrozol. The purpose of letrozol is primarily to reduce estrogen levels. Most of the side effects come from the absence of estrogen, but the letrozol can contribute. I asked if I could cut my letrozol dose in half and monitor my estrogen. As long as my estrogen remains non-detectable at a half dose or even no dose, would that be okay? She said no. The blood tests are not that accurate and letrozol has other cancer controlling effects. She said that even when ovarian suppression non-detectable levels of estrogen by blood test, they still prescribe letrozol.
I told her that I was taking Claratin to manage fatigue/shakiness on Ibrance. She had never heard of this. She said she could not imagine the mechanism. But she said taking loratdine/Claratine while taking Ibrance/letrozol is not contraindicated.
I want to consider going off of Ibrance if I have, say, a year of stable mets or NED. Many people remain stable/NED on letrozol alone for many years. Ibrance has been tolerable for me but not easy. She said there has been no clinical trial to answer that question and she does not expect one. They have no way of determining who will do well off of Ibrance and who will see their cancer return. Her recommendation is to stay on Ibrance until I progress or cannot tolerate the side effects.
I told her I have severely deteriorating vision. She said it was not a side effect of the protocol in her opinion.
She believes that I am doing great on a systemic therapy she has a lot of confidence in. She feels best strategy is to stay on this protocol as long as I can. Surgery and radiation is not indicated for me. Every year I can stay on systemic treatment, should give me more options.
Like many MO's she really did not give damn about my side effects. "Most women just power through it," she said. Doctors hear about the side effects all the time and they seem numb to it.. If I can't deal with the side effects, they have no solution for me. Ibrance is relatively easy compared to what she puts other people through. I give more weight to QOL/SE issues than a typical MO would in the decision to stay on Ibrance long term. It is still a big questions for me, not a question for them.
I find that most MO are kind of obtuse in protecting our QOL and overall health. This lady was no different.
So that's my experience from a conservative oncologist at a major cancer center on the cutting edge.
Greetings from Vancouver. Take care everyone.
>Z<
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Great info Z! Sounds like you're having a great trip and that talking to this oncologist gave you some valuable information. You ARE having an excellent response and I truly hope you can celebrate that. I am so impressed with your knowledge and "take action" attitude. I believe fully that helps someone's situation. Keep it up! Are you considered NED now since the mets are all gone? Or would that be when the breast tumors are gone as well? I understand you wanting to know if you could go off ibrance if you show stability for a period of time. Perhaps a dosage decrease? Could that help alleviate se's?
It sounds as though this doctor agrees there are MANY options. I hear this a lot in the Bay Area. Stanford, UCSF.... they all say this. And yes, there are several GOOD drugs coming out soon that might even be BETTER than ibrance. Imagine.
Could you clarify what the definition of oligometastatic is? It sounds as though if you fit this "mold" then surgery/radiation would be more strongly considered. My understanding of oligo is that it pertains to those who have fewer than 5 mets in ONE organ. Am I correct? I don't know that I am. My oncologist never uses the term with me and it does sound as though not every doctor buys into this "label." Interested to hear your thoughts about this.
Sending healing thoughts to all.
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Cngratulations Z for your excellent results from most recent scan!!!! I am also having a terrible time with memory and multi tasking. I cannot seem to handle more than one piece of information coming to me at a time. Memory has been getting worse for awhile but now there is a significant difference. It scares me. I am thinking it is the Ibrance.
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Excellent and detailed information, Z! Thanks very much for sharing that. I am also concerned about what is the best shot for a second line therapy. From the literature, when MBC becomes resistant to letrozole the cancer often stop depending as much on estrogen and instead depends more on the mTOR pathway, and consequently it could be a good idea to treat it with an mTOR inhibitor, such as the newer PI3K inhibitors in clinical trial (such as Apelisib), which can cause the cells to return to estrogen-dependence. Faslodex for sure, because that degrades the estrogen receptor, but if the cells are no longer as dependent on estrogen, one would want to put that in combination with a PI3K inhibitor. There is a trial called SOLAR-1 that is testing that combination. However, I would be reluctant to drop Ibrance, and so it seems that the best option now would either be a Faslodex trial with a chance of getting Apelisib added, or to go for the Faslodex-Ibrance combination. Immunotherapy will hopefully work better in combination treatments, but tests of immunotherapies with letrozole or faslodex are in infancy. So, for now I just hope that Ibrance-Letrozole can work for a long time, so that these questions can be resolved.
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Cure-ious - That is the best summary of the state of things should one develop a resistance to Ibrance that I have read. I will need to spend a couple of hours working through the details of that one paragraph. Thank you. If there are any links or articles I should look at, please PM me or respond here.
Afinitor is the current FDA approved mTOR inhibitor that Seattle Onc brought up but I have heard of Dr's refusing to prescribe it as it hasn't been shown to increase long term survival. It can be a tough drug. The mTOR pathway however is complex. It is likely they will find something more effective and less toxic in that class of drugs, soon.
Eelder - NED means no evidence of disease. I am not NED because a CT/Bone scan can still detect cancer in my breast and lymph nodes.
Oligometastatic means that you have a very small amount of metastasis to only one organ or the bones. Say 1-4 mets to the liver, all under 2cms. I am sure the definition varies and other factors like the aggressiveness of the cancer are considered. Some studies have shown that a percentage of patients with oligometastatic disease are curable. For this reason, some doctors treat the tumors in these patients more aggressively - with radiation and surgery - with "curative intent". I can't remember the exact details of your diagnosis but i recall thinking you were closer to meeting the definition of oligometastatic than I am. In one of your posts, it seem that your doctor seems to be considering treating you with "curative intent" (which is so absolutely fantastic). If so, it would be because you meet the definition of oligometastatic (limited metastasis).
I just barely miss the definition of oligometastatic because I apparently had one small met to the bone in addition to my the mets in my liver and I had 5-7 lesions in my liver. The were small. The largest was less than 2cm. But there were a few of them.
Thank you Singlemom. My memory loss terrifies me too. I used to be able to hold many things in my mind at one time it and manipulate them and analyze them. Not any more. I have to almost rebuild the way I think and live.
>Z<
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Hi all,
Sorry to say I have not been able to keep up with all of you on this fast moving thread, but I had some interesting lab results yesterday that I would like to share. I have been on Ibrance with Faslodex for a year now with great results. I haven't heard the word NED used here, but my last 2 PETs have showed little to no activity after having bone mets throughout my spine and pelvis.
I am currently struggling with an episode of diverticulitis (inflamed/infected colon). Couldn't take the pain anymore so I went for treatment yesterday and had some very surprising blood counts. WBC was at 10 and neutrophils at 7.5! I am at the end of my Ibrance cycle and WBC is "normally" at 5 at this point and neuts have rarely been over 2 since starting Ibrance.
So I am taking this as a good sign that my body is still able to go on attack when it senses infection in spite of Ibrance. What do you think?
Valz, Thank you for the info on the PAN foundation. This month I will be moving from Obamacare (which had great coverage) to a Medicare Advantage plan that has a $595 monthly co-pay for Ibrance. Especially painful as I will have to spend $3000 for drugs the 1st month and then do it again in January. This in addition to my 2nd deductible/max out of pocket for medical this year and again in January. I have savings, but could sure use some help. Thanks!
Claire, Thank you for sharing your travels with those of us stuck at home. Beautiful! Enjoy it to the max, you work so hard and really deserve this vacay!
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Hi Ladies - here is a pic of the Portuguese castle on the last lock of the Douro river. We stopped here last night to visit to a winery. Enjoying my ibrance with a glass of rose or port has been a highlight of my Spain/Portugal trip along with a deep soaking in of the views and history that brought many of us to the States - as this was where Columbus headed from the Spanish court in search of gold. Watched Olympic opening ceremony on a flat screen on the boat.
My gold medal goes to Z - proud of your engineering mind helping us better understand the research behind our meds, stay active and enjoy Vancouver! Thank you Cureious and Deanna too. I recommend UCLA to anyone needing a 2nd opinion. I'm already on a trifecta of arimidex, Faslodex and Ibrance #100 - hoping to stay on this and at my job for a long time, because as Pamj says the 2nd line might have more SE's. Thank you Stephanie for all your wisdom. I start round #9 when I have PET on August 18th. Nervous, so taking a friend along to drive me home. Salud~ Claire
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Oh, Claire, how beautiful! So happy you're thoroughly enjoying your trip -- wine and all!
jobur, so sorry about the diverticulitis. I hope it heals quickly. And very interesting about your counts being that high! I am also shaking my head about the co-pay on your meds. I don't know how anyone can afford that on an on-going basis. I hope the PAN Foundation can help. Please let us know what you find out. I would also be willing to help you search for alternate co-pay help, if necessary.
So I had my 6 mos. scans yesterday, and wonder-of-wonders, I actually got an email from my UCLA onc last night, telling me all is good. This was quite a surprise, since I also found out yesterday when I went on-line while waiting for my CT, that my TMs had jumped more than 90 pts. last month! So I was truly expecting bad news. But my Bone Scan report actually said, "No scintigraphic evidence of osseous metastasis," and "No foci of abnormal uptake in the bone," -- an absolute miracle when I started out with and still technically have "diffuse and extensive" bone mets. Still waiting on complete CT scan results -- for some reason she'd only gotten the abdominal part, which was good, but holding my breath re. the chest one. And I should add that my bone scan six months ago had noted an area of increased uptake around my right collarbone, but this time the still-seen activity was noted as "degenerative changes."
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Thank you Z for the explanation about oligo. I swear I look to you as my "second doctor." Ha!
I was diagnosed with one 2cm mass in the right breast, one node affected, and 3 mets to the liver (24mm, 17 mm, 13 mm). The breast mass has decreased by 40%, the node is no longer affected, one liver met is gone, and the other two have decreased by 40% in size and 50% in "hotness" according to my PET after 3 months of treatment. The "hotness" indicator I think is particularly helpful because size alone doesn't tell the whole picture.... the lesion could be dying ("decrease in hotness") and that can help predict (possibly) where you're headed... for this reason I am happy I get the PET scan. More informative I feel.
Perhaps this is why my oncologist and breast surgeon both recommend lumpectomy and radiation. Both seem to be very against mastectomy due to recovery time and lack of research to support survival outcome benefit. They plan to keep me on full treatment during the lumpectomy process and I believe during radiation, but that I am not certain of. My oncologist won't mention oligo or curative intent, but she's very conservative and so perhaps she's reluctant to predict much of anything or use any such terms.
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Great news Deanna! I want to stick to my original plan which is we will all die from old age while still on Ibrance!
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LovesMaltese.... THAT'S THE RIGHT ATTITUDE!!!!!
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Deanna,
As I said, I haven't been able to keep up with this thread, but I am so happy I jumped in just in time to hear your great scan results! So much for those old, crappy statistics, we are living proof that the times they are a changin'! Happy dancing for you tonight!
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Deanna -Glad to hear your great scan news!
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Yes the times are a changin'
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Got my results. MO said bones healing and strong, liver lesions shrank/gone and I have caries in that tooth. Still waiting to read actual results. He wasn't concerned about rash on chest.
So tooth is going ASAP. But hips have been aching. Icing helps. I keep telling myself it's a good sign. My WBC are cranking out.
It's different but I had a longer break than normal due to vacation. Any ideas? Claritin made me anxious but I might try it again.
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Zills, I've become a warrior to speak up about ONJ (osteonecrosis of the jaw) in those with bone mets who take the bone drugs Zometa (or other bisphosphonates) or Xgeva.
Two close friends with MBC have both endured torture, because of missed diagnosis and mistreatment of ONJ.
They and I are now encouraging everyone with bone mets and dental problems requiring major dental work, including tooth extraction, to see dental oncologists, if available in your region. Most major cancer centers seem to have them or be able to refer.
Please, don't get dental work done by any professional who's not skilled in the specific needs of those who've engaged these strong bone drugs.
Take your time to find proper medical care for dental problems when at risk for ONJ.
End of lecture, no end of loving kindness and high regard, Stephanie
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Valz, a while back you wrote about the use of neupogen for low counts when taking Ibrance. It's not something I've heard or read about from other patients, so I did a bit of leg work.
It seems that oncologists are advised to prescribe neuopen or other white blood cell growth factors for patients receiving chemotherapy who have febrile neutropenia. It's no longer prescribed for low counts in chemotherapy, unless the patient is at high risk for febrile neutropenia.*
When I looked up the risk of febrile neutropenia with Ibrance, I was surprised that the reported incidence was well under 1%. **
btw, I also looked up febrile and it means fever.
Hope this makes sense to you and that others can help with stories about febrile neutropenia with Ibrance, use of neupogen and other white blood cell growth factors and experiences that will help you to discuss this strategy with your oncologist.
You may well be at high risk for infection and your oncologist may be making a very personalized adjustment for your very personal situation. The trouble with consulting resources, whether support groups, professional organizations, government bodies like the FDA or medical journals is that their advice is general, not specific to any one patient's personal situation.
Sending hugs and love for all, Stephanie
References:
* Suggested guidelines for use of neupogen in cancer patients
#5 from http://www.choosingwisely.org/patient-resources/ca...
White blood cell growth factors for preventing infection
Some cancer treatments increase the risk of a condition called febrile neutropenia, which is marked by low levels of infection-fighting white blood cells and a fever. The condition often indicates an underlying infection, which can be serious for cancer patients who may not be able to fight the infection on their own and need to be treated in the hospital with antibiotics.
One way to reduce the risk is to give chemotherapy patients drugs that help the body make more white blood cells. Those drugs, also called hematopoietic (blood-forming) colony-stimulating factors (CSFs), include filgrastim (Neupogen), pegfilgrastim (Neulasta), and sargramostim (Leukine or Prokine). However, while CSFs can reduce the risk of infection, the drugs are expensive (up to $4,000 per dose), may require daily injections, and can cause side effects such as fatigue and bone pain.
The recommendation. ASCO recommends that white blood growth factors be used only in patients undergoing chemotherapy who have high-risk factors. That includes those who:
- Receive chemotherapy that carries a greater than 20 percent risk of causing febrile neutropenia and no other anticancer treatment that works as well is available.
- Have factors that increase the risk of infection, such as being older than 65 or greatly weakened by the disease, or having a compromised immune system—for example, from kidney failure or past cancer treatments.
What's behind this recommendation? Guidelines regarding the use of white blood cell growth factors are often ignored in clinical practice. For example, less than 20 percent of patients at high risk for febrile neutropenia received the preventive medication according to a study of about 1,850 patients with lung or colorectal cancer published in the June 2011 issue of the Journal of the National Cancer Institute.
Most chemotherapy regimens now used don't increase the risk of this kind of infection very much. But about half of patients undergoing a lower-risk regimen will still need to take CSFs because of other factors that increase their risk.
Questions to ask. If you are undergoing chemotherapy, you should understand whether the regimen puts you at high risk for infection and if you should be taking other m
edications to reduce that risk. Ask your doctor:
- Can my anticancer drugs cause low levels of white blood cells or infection?
- Do I have other factors that could put me at risk for infection?
- Do you recommend medication to increase white blood cell production? (Question your doctor if he or she describes your infection risk as low to moderate and prescribes a CSF; or, conversely, if your risk is high and you do not receive the drug.)
- What are the signs and symptoms of an infection? What should I report right away?
** Neutropenia in patients taking Ibrance from http://www.accessdata.fda.gov/drugsatfda_docs/labe...
Decreased neutrophil counts have been observed in clinical trials with IBRANCE. Grade 3 (57%) or 4 (5%) decreased neutrophil counts were reported in patients receiving IBRANCE plus letrozole in the randomized clinical trial (Study 1). Median time to first episode of any grade neutropenia per laboratory data was 15 days (13-117 days). Median duration of Grade ≥3 neutropenia was 7 days [see Adverse Reactions (6.1)].
Febrile neutropenia events have been reported in the IBRANCE clinical program, although no cases of febrile neutropenia have been observed in Study 1. Monitor complete blood count prior to starting IBRANCE therapy and at the beginning of each cycle, as well as on Day 14 of the first two cycles, and as clinically indicated. Dose interruption, dose reduction or delay in starting treatment cycles is recommended for patients who develop Grade 3 or 4 neutropenia [see Dosage and Administration (2.2)].
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Zarovka, great news on your scan. Thanks for the suggestion of PTSD. I don't think I have been that stressed, but maybe I have kept it in. Something to consider.
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Ohmydarlin, I took my Ibrance and Letrozole with food at dinner (I usally eat dinner early, but I took it with a small amount of food if I was having a later dinner). I set my phone alarm to help me remember to take it at the same time each day, and kept a few pills with me in case I wasn't home in time. I was also on Xgeva. I didn't have a problem working my normal up to 30 hours a week, but that is considerably less than 40 hours. From reading everone's posts, the se really vary from person to person. I had very few se that effected my normal routine. I suggest a positive attitude to start with. The Ibrance can do great things!
Due to an unconfirmed, possible reaction (blocked stomach obstruction) to either the letrozole or Ibrance, I most likely will not be able to go back on either drug, which is disappointing because they were working. I am in the process of deciding what to switch to. There are lots of options, which is great for all of us, and I plan to be around for YEARS to come.
Good luck to all of you. Thanks for all your posts and information. This is a fantastic site.
Amy
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Ainlowa - I have to keep reminding myself of the PTSD. When I have weird symptoms that could be stress, I believe they probably are. Like other women on this board, I roll up my sleeves and get on with my life as best I can. I have no time for shock panic or trauma. But the stress is tremendous. It has to go somewhere. It will present itself as the weirdest things as well as common stress symptoms. First three months were full of symptoms and oddities. Some of the symptoms came back when I just got my scans, even though bad scans were unlikely. Nothing to do but be aware and take care of yourself.
Deanna - I am thrilled to hear about your scans. On the edge of my seat to hear about the CT's. How long have you been Ibrance? I am always interested in the period over which cancer continues to respond to this treatment.
Eelder - From what I understand you would meet some definitions of limited metastasis (oligometastatic). I think it is the bone met that definitively excludes me from being considered oligometastatic. Two different types of tissue effected.
Zills - I am thrilled to hear about your scans as well. How long have you been on Ibrance? Claritin has really only helped reducing (but not eliminate, see below) fatigue and shakiness and not joint point. Also I don't have the painful kind of bone mets.
I was finishing a long day in Vancouver biking and walking and seeing attractions around 7pm when I had complete collapse - shaky, nausea, headache, extreme fatigue - for the first time on the trip. It hit about 90 minutes ago. I dragged myself back to the AirBnB apartment. Kids ran around for advil and water and tea while I contemplated whether I should lie in bed or sit next to the toilet and try to barf. Resting and doing better now.
I have not gotten used to being sick. It always comes as a surprise when cancer interferes with my life. I was feeling so frustrated this evening when I opened up BCO and read about all these great scans we've had recently. Thanks for changing my mood. It is such a pleasure to hear that you are all doing well.
>Z<
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I have been doing a lot of reading about breast cancer, nutrition and that sort of thing since my diagnosis. I wanted to list the books I felt were great reads.... if you have read something you'd like to suggest that isn't on my list, could you post it? I find reading to help me feel some semblance of control over my situation.... it's all about the games we play with ourselves, no?
* Radical Remission
* A Woman's Guide to Healing from Breast Cancer (Traditional Chinese Medicine)
* ANYTHING by Kris Carr.... so inspiring and uplifting
* Natural Strategies for Cancer Patients By Russell Blaylock
* Anti-Cancer By Servan-Schreiber
* Beating Cancer with Nutrition by Patrick Quillin
* Life Over Cancer by Keith Block
* You are the Placebo (Mind over Matter)... GREAT book about the power of the mind
* The Gerson Therapy (reading currently)
Anything to add/suggest?
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Thanks for the reading list.
Thanks Stephanie about ONJ.
Just started my 8th round but at least three rounds were only two weeks due to circumstances not health. Only the first was 125, rest are 100. MO doesn't want to drop me to 75 for fatigue only.
The hip achiness is new. I stopped cymbalta because I sleep even worse on it but it controlled the pain. Didn't realize how much until I started it. I was actually able to play with my kids.
I just thought Claritin might help because it's recommended after a nuestala shotto help with the pain. Since my bones have healed why would they start to hurt now? Didn't hurt before. I'm one of those no symptoms people.
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Dear eelder,
Good on you, seeking out a wide range of sources & ideas for cancer, nutrition and healing.
Other favorites of mine are:
The Cancer-Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery By Rebecca Katz
One Bite at a Time: Nourishing Recipes for Cancer Survivors and Their Friends By Rebecca Katz
(Katz's recipes at http://www.rebeccakatz.com/recipe-box/ Worth bookmarking!)
Ceres Project cookbook Nourishing Connections Cookbook - their recipes at http://ceresproject.org/recipes/index.html
Embrace, Release, Heal: An Empowering Guide to Talking About, Thinking About, and Treating Cancer By Leigh Fortson
Breast Cancer? Breast Health!: The Wise Woman Way By Susun S. Weed 1996 - old but lots of little, helpful tips
Choices in Healing: Integrating the Best of Conventional and Complementary Approaches By Michael Lerner - even older, but a good overview of looking at choices in healing cancer
Heal Breast Cancer Naturally: 7 Essential Steps to Beating Breast Cancer By Dr. Véronique Desaulniers (I didn't enjoy this one, because she lectures, but you might be open to a "talking to")
You're going to quickly find that dietary guidelines differ dramatically between experts. It's up to us to tune into our bodies' wisdom and follow Michael Pollan's basic dietary advice - eat food, not too much, mostly plants.
Be sure to look into bco's Forum: Complementary and Holistic Medicine and Treatment at:
https://community.breastcancer.org/forum/79
I believe that you're in California too. There are a myriad of integrative, complementary, holistic and alternative resources here from community classes to licensed professionals to Integrative Centers at the major cancer treatment centers. Just look around!
warmest healing wishes, Stephanie
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One of the most interesting studies i read about in the Anti-Cancer book was the discrepancy most Americans have in their diet regarding Omega 6 fats vs Omega 3's. Then this morning CBS had a great forum on the same discussion and how balancing these two components in our diets helps everything from cancer to diabetes, arthritis, and heart disease. Another thing I plan to implement.
Z, a bike ride around Vancouver sounds wonderful. Sorry it ended with you feeling sick. I imagine just everything you are jamming into this trip, the stress and travel ect, had a lot to do with it. Luckily you are in such great shape and bounce back quickly. It sounds like you got lot of info from the Onc and it helps to get clarification, validation and even contradiction in some cases. but what frustrates me as well is the cavalier attitude about QOL and general health issues. As if we should be so grateful for treatment that we just have to suck it up and feel like hell. I too have trouble pulling up things from my brain. Mostly single words I am trying to spit out. It's very frustrating and sometimes embarrassing....
Claire, gorgeous pics again and looks like the weather is as well. I am still very interested in the fact that you are on Arimidex and Faslodex together. i read somewhere recently that this is a new approach that is receiving a lot of attention, a "multi-med assault" so to speak being more effective than one alone. Sounds like it is doing well for you!
eelder, 7 years sounds VERY good to me too! I am rooting for you being Oglio as that they can do some surgery to work some magic for you! I am fascinated with the prospect for you.
Yay Deanna! Super happy Dance for you! And jobur too! Keep those good scans coming! Zill's too, glad the scans look good. I hope the dental issue goes smoothly. As Stepahnie said. I too would inquire about a dental oncologist. I have heard a lot of scary episodes over this issue.
You as well Zimmer! Sounds like you are tooling along. I too get a lot of these SE's like the watering eyes, YUCK! Thanks for the ointment tip. What is the soap in the bed thing? Have a great big 40 party!
Thanks ladies for all the book recommendations. I have been on a new information quest and am ripping through them. The cookbooks I plan to purchase rather than get from the library as it takes longer to "digest" the info. haha
AinIowa, when I had trouble with this combo my Onc pulled me off of both at once. I wish now that we had quit one at a time so that we could eliminate which one caused the problem. Because Letrozole can be taken alone or ibrance combined with another, in quitting both at once you are essentially eliminating them altogether without knowing which caused the problem. That will make it harder to know when to retry one or the other later. Just a thought as you don't want to eliminate anything for good if it was helping with the cancer....
Carol, I think we should start the "old age" club with some snappy title!
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Thank you Stephanie for those book suggestions. Can't wait to read them.
I think there's a lot to be said for the ratio of Omega 6 vs. Omega 3 fats. Never occurred to me before cancer (a lot didn't) but in my research and reading it seems to be a common theme along with the acid vs. alkaline diet. Seems to me that eating the most plants you can is huge. Thank goodness for blenders and juicers! Ha!
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