How are people with liver mets doing?
Comments
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Shetland - What did it feel like for both? Was it similar pain?
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Stefajoy - That's such great news!! Gives me hope!
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Shetland, thanks for the smart enough comment! I had to smile at Wendy's post as I often feel completely "spun" by all the info, references and clinical terms. Z and Cure-ious sure have a handle on the science.
Stephajoy, yes nice post!
MJH, Dianarose was heading out on a little vacation I do believe.
Kay, great news on no brain mets!
kaayborg, we are wishing and praying for you too. Good luck next week!
You too babs, I hope they have a good plan all set for you.
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leftfoot...kick some ass on the 11th. I got good news for the first time in December yesterday...your turn!
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Shetland - My liquid biopsies (circulating tumor DNA) were negative for any mutations right when my cancer was apparently growing rapidly and express a host of nasty mutations. I am still trying to understand what they look for, exactly, and I may mis-understand the test. But not super useful. Trust me we all feel stupid at some point when it comes to trying to understand cancer genetics.
Babs - while you hold down a job I Google in desperation. I think you deserve more credit.
>Z<
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Hi All
I’ve been in touch with Danis Mom. Right now she’s busy trying to find a new mo for Dani and is very stressed but she asked me to let you all know that she thinks of us.
Babs
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thanks Babs.
Mom- you and Dani are slways in my thoughts. I hope you find someone who makes you feel listened to and cared for.
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Question ------ Can liver lesions be seen by ultrasound? I am requesting an ultrasound of the 7/8 lobes when I go in tomorrow. Since I started the raspberry powder and raw hemp oil I have not had liver pain at all and can sleep on my right side again. Before I begin the A/A combo I want to know what sizes the lesions are now compared to their big honking size on October 2.
Inserted after I typed everything..... I'm sorry, I talk a lot when I type. Cannot speak much w this voice, so the words ran on.
Shetland Pony --- Yes, have had lupus for about 25 years, photosensitivity to fluorescent lights and sun and even shade, the radiation cycles in spring sent me into flares like I have never had and there seemed to be no end for months. I received a letter from the rheumatologist today, all the mixed connective tissue disease is dormant now, seems the Xeloda helped that along. I don't want to do anything to excite it again. I was hoping if I did SIRT it would not be the same effect as radiation on the table. If I need to go that far. And yes, I am quite terrified to begin the Afinitor due to the lung inflammation and #5 fatalities I have read about on bco. And yes, I thought that being at the Goshen CC would be a step toward being treated as an individual but I am not seeing it so far. Have also been given a liquid dexamethasone which is a corticosteroid and wasn't told it would be in my protocol or why, they have to explain and especially since I have proven to be allergic to prednisone, severe rash, heart racing and a hint of trouble breathing and told them so and it is in writing in my file. Hubby picke RX up yesterday and I read all on it today. Very frustrated. I do have the liver biopsy results. And one reason I chose Goshen was for the genetic testing they have but it wa not set up yet. Thursday - it is on the list.
Z ----- I also appreciate your details on the European trials that was posted by Lucia. On the TACE, I thought the same way, but I do know both the oncologists that chose the Afinitor/Aromasin wanted to do systemic and endocrine but the first also chose the tACE and I know I am in no physical condition to handle it. The second oncologist realized that, relief, but he did say since I had not been on any IV chemo yet that it was ridiculous to consider putting me through TACE. I just get in this whirlwind of confusion when that kind of contradiction is hurled at me, I left thinking good no TACE, then it took two weeks to say, wait a minute, IF I could do TACE this would be the time, not later. You are right, I am requesting the liver specialist for cancer there be consulted too. I see the nurse for labs on Thursday, the list of questions with a request for an appt is in the making. Thanks for the input.
Lucia - what really jumped out at me from the post was there are only 154,000 American women/men with stage IV. To me it seems like hundreds of thousands more.
Everyone- it is true, the stats become old every year, the new treatments make them obsolete and leave us more hopeful. The issue is finding the right ringer for each individual's treatment and a medical team that is open-minded and will not give up.
Talk me down, I'm getting BUGGY!!! Tomorrow morning I will find out if I have hit a wall at Goshen. I chose Goshen since my center did not have a new team yet - 6 mo after the primary onc I have had from the beginning left for Alaska. I waited and then left. I am discouraged so far. So is Hubby, he was at the appt. After nearly a month of waiting for an appointment from my first call. I had the impression the med records would be gone over and I would get an appt asap due to severity of the case - in that I cannot walk much, breathe well and back then could not eat at all, lost 23 # in 3 weeks. Then it took another two + weeks to get the meds and training. There have been too many loops I have to go back and push them to deal with. Like not getting me the appt for training for the Afinitor. I had to make my own personal referral to the thyroid specialist / surgeon, the onc didn't see fit to get back to that on the first visit, though it was on the top of my list and my throat feels like it can close off too often to be calm. But I have an appt. I told him about the pneumonitis and asked if it is still there, no comment. I told him about the level 9 pain that radiates at the center of my spine then dissipates in 5 or so minutes, no comment. UGH!!! The onc also gave me the option of palliative care w a nursing team coming to the home OR Taxol 1x / week OR Aromasin/Afinitor. But no help at home IF I was getting more than palliative care. I was quite unhappy with him at first then realized it could be his way of saying he respects my wishes. Hubby and I are revisiting that one at the appt w him. He was direct when he asked if anyone had spoken to me about the seriousness of my condition. I said no, my doctors always know I am pro-active and they pat me on the back. He sent me to the counselor for a living will, but everyone gets that option they said. Enough bugging out, just wish it was time to leave for Goshen - was in bed 3 hrs and no sleep so up to stop wasting time.
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Kaayborg - thanks for responding to my question. I cannot have an early scan because it's still too soon after my latest scan. I so hope for you that you will get the mets under control again - for a very long time!
Shetlandpony - yes I hope for dying mets BUT just after being diagnosed I was put on faslodex/ibrance for 2½ month. After one month I had heavy liver pains - and hoped that it meant that they were dying. The next scan showed that the mets had almost exploded from being few and rather small to now filling up the liver and grown together so they couldn't be distinguished anymore. The combination of F/I hadn't been working at all. The pain now feels exactly the same. Hope is such a scary feeling. When crushed it hurts so much!
The nurse who gave me the chemo yesterday said I was receiving palliative treatment - and had to weigh carefully between the damages from the treatment and pain from the illness. I was chocked. The doctors didn't use the word 'palliative' to me (though they weren't personal at all or encouraging either). But maybe all MBC-treatment is categorized as 'palliative'? Is that so?
Bluebird - I feel for you! Hope you have a solution soon for further treatment. What is the raspberry powder and raw hemp oil good for? What is the theory behind this combination in relation to liver pains?
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Bluebird. Sounds like you are between a rock and a hard place. So much confusion, lack of trust (with good reason) and no clear plan. I hope today is better for you.
You said you have Lupus? My DD just had a lumbar puncture, the labs from the spinal fluid are abnormal. One doc says he thinks it's MS, but it might be Lupus or sarcoidosis. She has to wait until next Tuesday to have an MRI, talk to neurosurgeon about her shunt and appt with PCP who thinks all of this is being blown out of proportion. Then go to her Neuro-ophthalmologist on Wednesday for the results of MRI. Even after that there may still need to be more tests before a clear DX.
She's 44, how old were you at DX of lupus? She also has a rare disorder called pseudo tumor cerebri. That's why she has a shunt.
If anyone else knows anything about MS or sarcoidosis I could use a little help here.
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It is an exciting time in Oncology and I feel as though we are on the cusp of having some amazing and more "curative" treatments. I want them available NOW for all of US!
It is overwhelming to try and absorb it all. I am going to ask my MO on the 15th about getting in line for future trials at Dana Farber. I live 21/2 hours from Boston, so seems most feasible for me. Anxiously awaiting to see if fulvestrant is going to do any thing.
Hugs to each, MJH
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Liver lesions totally visible in ultrasound. Usually liver biopsy is guided by ultrasound.
>Z<
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Lisbet, we are sitting in the same cruddy boat with liver pain and explosion of growth to the point tumors are all mushed up together. We're trying to give pembro a little more time to work and watching liver numbers and symptoms carefully. My onc is scanning early (Dec 27) even though it will be difficult to gauge success of treatment because she wants to keep tabs on how much worse things are potentially getting to help us decide if we should abandon ship and move on to something else. It will be a hard call. Increase of pain and pressure feels so hard to gauge. I feel it may getting worse but also think the duration of the discomfort makes it seem worse anyway. It surely is harder to find a positive attitude when there is pain that is constant reminder of the problem. I have two appts set up in Nashville while we visit family, at Sarah Cannon and Vanderbilt to consider trial options. Depending on how scans look we made decide to skip treatment and start the wash for a trial. I wish your team was listening to your symptoms more and thinking ahead. You may need to push them to do so. I forget how long you've been on Taxol. Need to go back and read. Wishing the best for you and all. So much going on round here lately.
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Does Radiotherapy Lead to An In-Situ Breast Cancer Vaccine?
Bryant Furlow
Preclinical studies suggest that radiotherapy's pro-immunogenic effects might improve the antitumor efficacy of immune checkpoint inhibition.
The following article features coverage from the San Antonio Breast Cancer Symposium (SABCS) 2017 meeting. Click here to read more of Cancer Therapy Advisor's conference coverage.
Radiation causes the cytoplasmic accumulation of double-strand tumorDNA fragments that appear to serve as in-situ "vaccines," facilitating an antitumor immune response outside of irradiated fields, according to a review of preclinical and early human trial data presented at the 2017 San Antonio Breast Cancer Symposium.
Radiotherapy is a promising addition to cancer immunotherapy because of its ability to convert the irradiated tumor into an "individualized, in-situ vaccine," said Silvia Formenti, MD, of Weill Cornell Medicine, in New York, New York.
DNA damage repair (DDR) contributes to immune rejection of tumors, partly explaining the efficacy of platinum and radiotherapy combinations — potentially opening the door to precision radiotherapy and radioimmunotherapy, Dr Formenti said.
"Most breast cancers may require multiple immunotherapeutic interventions to become an in situ vaccine," she added. "Radiation-induced DDR converges with the innate immune system, with a tumor-specific dose-threshold."
Radiotherapy-induced cell death can induce T cell effects outside of the irradiated field. These abscopal effects are, however, "extremely rare," due to immune-suppressive tumor microenvironments. Preclinical studies suggest that radiotherapy's pro-immunogenic effects might improve the antitumor efficacy of immune checkpoint inhibition. But the optimal radiation doses for combined immunoradiotherapy remain unclear.
The findings support the choice of 3 to 5 doses of 8 Gy each when radiotherapy is combined with immunotherapy, Dr Formenti said. Building on those findings, her team initiated a pilot clinical trial of radiotherapy in patients receiving ipilimumab for metastatic NSCLC.
Additional research is under way to begin to define optimal treatment fields and treatment sequencing.
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I haven’t posted for a while. The board moves so fast it’s hard to catch up after a few days.
Best wishes to all who are working to find their next line effective treatment. It’s so scary that there isn’t a more clear way to identify what treatment is going to be effective.
I had good news from my first MR I after my Faslodex/Ibrance 3 month scan. Tumors have shrunk so the initial response was very good. Hopefully that will continue for a while. I was feeling good about the results but unfortunately got a really bad cold shortly after but it seems like it’s taking forever to recover, especially my energy which is really impacting my mood. It happened at the end my Ibrance cycle so I think some of those to Ibrance fatigue. I’m hoping to start feeling better over the next couple of days after being off the medication since Monday.0 -
Thanks, Zar, I had just been scanning news from San Antonio and disappointed to not find anything of much interest. And really?! now they are trying to make the argument that there is no benefit to overall survival to taking AIs for more than two years after primary breast cancer? Their new idea: save your bones and avoid fractures? How smart (NOT!)- all of this just sounds like insurance talking! And then the other idea I read is that immunotherapy has its best shot, which pretty much sucks regardless, when given as part of the firstline treatment, so don't wait too long, the tumors are getting immunologically colder and colder the more they progress. Well, that's all depressing. So, thanks for your more hopeful news, even tho they are only testing in NSCLC. Pre-clinical data might also suggest that the strategy you are proposing here might work much better if the original primary tumor remains in the body. Then radiaiton can blast all kinds of cells loose and immunotherapy can tee off on those cells to create that vaccine-like environment. Do radiation early and often? we'll see, might work...
Anyway, from a review last March, here are some clinical trials for those interested in radiation and immunotherapy combination:
CTLA4/PD1/PDL1 inhibitors and Radiation Therapy Trials for Metastatic breast cancer
Radiotherapy with CTLA4 inhibitors: Tremelimumab with brain irradiation; For Breast cancer with brain metastases: Memorial Sloan Kettering Cancer Center Phase II, recruiting NCT02563925
Radiotherapy with PD1/PDL1 inhibitors: Pembrolizumab/Keytruda and 6 Gy × 5 within 5–7 daysFor Metastatic TNBC Memorial Sloan Kettering Cancer Center Phase II, recruiting NCT02730130
Pembrolizumab and hypofractionated RT For Metastatic breast cancer. At Abramson Cancer Center of the University of Pennsylvania Phase I, recruiting NCT02303990
Pembrolizumab and 20 Gy × 1 (SABR) for Oligometastatic breast cancer at Peter MacCallum Cancer Centre, Australia Phase I, recruitingNCT02303366
Durvalumab with Tremelimumab and 8 Gy × 3 fractions vs 17 Gy × 1 fractiona for Metastatic breast cancer at Abramson Cancer Center of the University of Pennsylvania Phase I, recruitingNCT02639026
Nivolumab given after either 20 Gy × 1, low-dose doxorubicin, cyclophosphamide, cisplatin, or no induction treatment for TNBC at The Netherlands Cancer Institute Phase II, recruitingNCT02499367
Pembrolizumab and SABRa Breast cancer at the University of Chicago Phase I, recruitingNCT02608385
Radiotherapy with miscellaneous immunotherapy LY2157299 (TGF-β receptor type 1 kinase inhibitor) and 7.5 Gy × 3Metastatic breast cancer at Weill Medical CollegePhase II, recruiting NCT02538471
Imiquimod and/or cyclophosphamide with 6 Gy × 5Metastatic breast cancer at New York University School of Medicine, Phase I/II, recruitingNCT01421017
MEDI6469 (monoclonal antibody to OX40) with RT of 15, 20, or 25 Gy to lung or liver metastases for Metastatic breast cancer to the lung and liver at Providence Portland Medical CenterPhase I/II, recruiting NCT01862900
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double post, also on steam room thread.......
Got up and headed out into the dark morning and snow started roads got icy and wind. We got to Plymouth and Bruce thought we should turn back. Me too. Inseeting that two yrs ago we were in head on collision due to trying nto get to safe haven when sudden blizzard hit, small car in our lane went under yukon and split ours frombottom. Broken stuff, wheelchair six weeks. So now we are huge chickens about snow. But it was formidable this morning and not supposed to snow this far south of cancer center. So…... Home and cancelled appointment. But next chemo pill nurse training appointment is not until one week from now. Not happy. Puts off starting chemo, genetic testing, appt w oncologist, ultrasound, labs, answers I need. Their office never did schedule me for this training, we had to push through with another department calling them because I was supposed to have training before chemo arrived. And there is the periodic pain in spine that goes from 0 to 9 in a minute, makes me cry. I don't know what causes it. Gone in about 5 minutes. I think I have jumped out of frying pan into the fire. Meaning Warsaw to Goshen. Very lost and discouraged. Don't know if I should just give in and go back to Warsaw or find a different oncologist. or hope this p!ace can and will do better. Despite rve reviews, I find myself sctchinf my head.
Grannax ,thanks. The red and black raspberry powder is a super dose of ellagitannins. I used it before I turned to Dr. G for help and hormone therapy. It had helped me prior with feeling much better. The raw hemp oil is something Dr. G approved of me taking too, Who knows if it scans to prove helpful but when I found out the xeloda hadn't been working for all those months and the liver lesions were so huge there was very limited treatment then I got out my leftover supplies. Don't know if it is helping in size but do know no more liver pain. So onward. The supraclavical broad basin of lymph nodes that had radiation is now swelling and scaring me. Could be autoimmune like oncologist said, could be cancer or post radiation swelling though that was done in May. Never may we rest on our laurels.
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Bluebird - I am crying with you. I don't know how anyone could do that to you, I am so so sorry. All those pink ribbons showing they care ... yeah right. How about you do your job? A stream of expletives left my mouth as I read your post. I'm sure we are not hearing from MomATT for the simple reason that she is too overwhelmed dealing with BS like this to even get on the computer. Hugs and strength to you, MomATT and everyone fighting for your lives in a machine that is not held accountable to the patient ...
I decided to switch to a new onc for lesser cause. I talked to local medical professionals dealing with cancer ... themselves or their family .... and all signs pointed to the head of medical oncology at Presbyterian. I am giving it a whirl but it has taken 8 weeks to arrange to get into see this guy. I had to keep working with my old MO during a very diagnostic/treatment decision sequence. I have improved at dealing with the MO and I have no doubt that I will be using all those skills with the new MO. I am also not closing the door to the old MO because, who knows. I am hoping for an improvement, but expecting more of the same as well.
Do I need chemo training and has it be scheduled? Ladies put that on your checklist...
It's up to us, unfortunately, despite our lack of information and authority, to get our treatments right ....
Hugs Bluebird. I am extremely worried about the pain. I will spare you my full lecture, but you simply can't shoulder your heavy responsibility for your care while you are in pain. What do you need? Drugs? Rads? Accupuncture? I would make that my primary focus until your pain is below a 2. For that you can ask for a palliative care specialist. Again MO's are not the best at that. You need a specialist. I increasingly wonder what MO's are actually good at ... certainly not good at organizing my care in my experience.
Cure-ious - Last year immunotherapy was supposed to work better on late stage highly mutated tumors, but it was obvious to me (a non-expert) that they were only looking at a very specific interaction between PDL-1 inhibitors and their targets when they came up with that little gem. I guess someone figured out that the immune system is .... a system. Right in the name folks? If the PDL-1 inhibitor finds a target but the rest of the immune system has been wiped out by chemo the response will be weakened.
IMO, the best strategy for immunotherapy attempts is early and often. Like voting in Chicago, as they say.
I am working getting radiation to my sternum in January. Plan A is to beg for PDL-1 inhibition in some form outside of a trial. I have no PDL-1 expression in my genetic test results but radiation actually causes PDL-1 expression. The PDL-1 expression puts the breaks on an immune response even as it promotes an immune response by expressing neo-antigens from the stressed and dying cancer cells. That's why PDL-1 inhibition is a great combo with radiation and why you see all these trials. The fact is that we're looking at combining two approved treatments so you don't technically need a trial to accomplish this trick.
Thank you for your comment about abemaciclib causing PDL-1 inhibition ... do you think Abemaciclib might accomplish the same thing in combination with radiation treatment.
>Z<
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For anyone who is interested Bestbird has posted a excellent summary of 2017 conference. Topic: San Antonio. She also updates her quide with new info.
She is really a thorough and factual writer.
-k
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Bluebird it must be so frustrating and discouraging to deal with all the obstacles you are having with your treatment. I agree with Z that it is difficult to deal with care and decisions while going's through such severe pain. Maybe you can get some quicker local care for that. I'm in California now but originally from the Midwest and feel so bad for you trying to drive in bad snow and having to cancel your appointment and delay your treatment.
Cure-ious and Z it is helpful to see your comments on immunotherapy. It totally makes sense that earlier is better, while your immune system is less compromised. From my recent cold I can see an impact on mine already. My MO hasn't mentioned next steps after Ibrance/Faslodex, just said we need to hope for it to be effective for a long time. I haven't set up a 2nd opinion appointment at UCSF yet but feel like it's time to do that for another opinion in the event of other recommendations or future trials and next line treatments. Also to ask about Y90 or other radiation options which my MO did not support. I'll be starting my 5 cycle later this week.
I think several of you have used/use complimentary treatments for example Vitamin C infusions. I just heard about a nearby naturopathic physician who provides various therapies for patients undergoing cancer treatment. I'm interested in any thoughts about things to consider in going to a naturopath.
Best wishes to all.
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Liwi - My main comment on naturopaths is that you must go to someone who does nothing but cancer. There are good ones, and there are interesting alternative options, but you can't dabble in cancer. What you want is a complmentary oncologist with medical training in oncology. Google FABNO. In California you should be able to find someone who specializes in breast cancer, but the main thing is to look at their training and the focus of their practice.
My problem with complementary oncologists is that they don't integrate complementary meds and the standard of care. They try to operate in parallel rather than providing an integrated approach. This is a deliberate strategy that arises from our laws, but it severely limits their effectiveness.
Z
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Zar- I think if you need radiation, its a great opportunity to either combine it, or rapidly follow it, with some immunotherapy- where the treatment falls short is that it seems that they don't want to add radiation unless it is independently needed (hope you know what I mean; in their minds, these are two independent treatments, but you are taking them for the synergy as a combo- and I think it can be sequential and still work)-
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Cure-ious - I have a pretty strong argument for rads to the sternum. The doctors agree. We'll see what the insurance company thinks.
>Z<
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Zar- You could consider going from radiation into the Abemaciclib-Keytruda trial, which just posted early (4 mos) promising results in San Antonio (at 4 months, adding the Keytruda is doubling the response to Abemaciclib, and there is no anti-hormonals at all in that treatment; they said that the first year results will be released early 2018). Cannot tell what the PDL1 levels were in this study, or if it mattered...
http://www.onclive.com/web-exclusives/abemaciclib-...
Also for TNBC, there are updated results from the Halaven-Keytruda trials: http://www.onclive.com/conference-coverage/sabcs-2...
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Zar- You could consider going from radiation into the Abemaciclib-Keytruda trial, which just posted early (4 mos) promising results in San Antonio (at 4 months, adding the Keytruda is doubling the response to Abemaciclib, and there is no anti-hormonals at all in that treatment; they said that the first year results will be released early 2018). Cannot tell what the PDL1 levels were in this study, or if it mattered...
http://www.onclive.com/web-exclusives/abemaciclib-...
Also for TNBC, there are updated results from the Halaven-Keytruda trials: http://www.onclive.com/conference-coverage/sabcs-2...
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Z - or you could just follow MONARCH with Abe alone - it has a better response rate so far than the trial combined with Keytruda. It's nice to have choices.
FYI onc and I are discussing adding faslodex to low dose xeloda next (if liver is the issue) or fas+ tamox or even just with Xgeva (if bone is the issue). I will post updates from UCLA team. All depends on end of January scans.0 -
Hi LaLady, If I understand correctly, the response rate of the trial with Keytruda added is less than the trial of Abemaciclib alone, but that's just because the Keytruda trial is early, whereas the Abemaciclib trial went further along- and it takes months for the drugs to have full effect. They say if they compare the plus-Keytruda trial response to what they saw in the Abemaciclib-alone trial at the same time point (ie, at 4 months in), the plus- Keytruda trial already has double the number of responders. That's because the response can take six months or so to show clearly. So IF the difference they are seeing now were to hold up all the way to when the trial has fully matured, it would mean that rather than having a total of 19% of patients responding (which is what they got in the Abemaciclib-alone phase 1 trial), they might have closer to 40% responding in the Keytruda-Abemaciclib trial, which would be a big difference. Of course, it can go the other direction, too!! The one year update will be more meaningful.
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LaLady - the preliminary results suggest abemaciclib/Keytruda results are better... which is makes some kind of sense. There was a Nature article that showed that abemaciclib facilitated PDL-1 inhibition in the lab. I think that is very cool.
Cure-ious -I appreciate that you thought of me when you saw those trial results ... it's going on the list.
At the moment the question is whether insurance will pay for proton beam therapy (PRT) for my sternum met. PRT is more targeted with much less damage to surrounding tissues. Odds are the insurance company will argue that I will be dead soon so there is no reason to preserve the surrounding tissue. Looking forward to a fun discussion.
I switched from Aetna to Blue Shield of California in October. So far Blue Shield seems picky. They declined the Caris testing as experimental. It's Caris' problem since the test was already performed but it may be more difficult to do in the future. But then again, Aetna declined the Foundation One test, after it was performed. Interesting waltz going on between the insurance companies and Caris/F1.
And while we are on the topic of experimental diagnostics that insurance doesn't pay for ... at the advice of my consultant I had pharmacogenomics testing done by a lab in Australia. This is a test where the evaluate which metabolic pathways work and don't work in an individual (me in this case) based on genetics determined from a blood sample. I am poor metabolizer along the CYP3A5 pathway and I am unable to metabolize tamoxifen properly. That piece of the test is widely available in the US; however, the australians evaluated my ability to metabolize a wide range of drugs and determined that I can't metabolize Claritin (loratadine) so instead it turns into a toxin ....
Now this is interesting. Since I got back from Japan I've been off all cancer treatments and all those side effects went away, but I was dizzy, tired, and had terrible dehydration. Thirsty all the time, dry mouth. And, of course, my veins disappeared to the point where, as you all know, I went and got a port. I couldn't get a blood draw from my favorite awesome phlebotomist without three stabs and a bruised arm.
Well, it turns out that when I got back to NM in November I started taking loratadine every day (reasoning complicated) and that correlates exactly with the start of these symptoms. (Remember that I am off all cancer treatments) I stopped as soon as I got the report a week and the side effects have disappeared and I have veins again. I had loratadine poisoning. The stuff was accumulating in my system to dangerously toxic levels.
Many people on Ibrance and other drugs take loratadine daily to manage the side effects. Watch for dry mouth. If you are thirsty all the time it is a sign the drug is reaching toxic levels. Pharmacogenomic testing that goes beyond tamoxiven is available experimentally at Mayo, if anyone is being seen there.
>Z<
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Thanks for your suggestions on the naturopath Z. Makes sense to find one who specializes in cancer.
Your test that showed a toxic reaction to loratadine is both interesting and frightening. I just started taking it again for allergies and side effects. I’ll be extra attentive to any dizziness or increasing thirst. It’s such a common drug and I never would have thought it could be dangerous.
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I just read an article about a trial in the UK - they are looking at combining Herceptin and Immunotherapy. What interested me was the notion that Herceptin not only suppresses the HER2 protein, but it also can make the cancer cells more recognizable to the immunotherapy drug. I wonder if this means Herceptin can be used by Her2 negative patients also? If this works, it could be a huge leap forward.
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