How are people with liver mets doing?
Comments
-
I just want to vent on my Oncologist while confirming how important it is to be your own advocate!!!!!
After my blood clot from my port, my MO put me on Eliquis X 2 per day. I am on Carboplatin for the second time, and had to quit the round I did last fall because of low platelets. MY MO knows I struggle with platelets and Im doing everything and anything to help keep them up. Well today they were 50 down from 100 last week. I have asked my MO a couple of times if the Eliquis could be lowering them and she blew me off. Well tonight I got home and started my research and this is what I found.
1. Eliquis has no direct effect on platelet aggregation but by inhibiting factor Xa, it ensures a reduced formation of platelets.
2. Eliquis Interactions
- Serotonin and norepinephrine reuptake inhibitors (SNRIs), such as Cymbalta(duloxetine), Khedezla or Pristiq (desvenlafaxine), Fetzima or Savella(milnacipran), or Effexor (venlafaxine)
I am been taking Effexor for years and my MO has actually filled it for me several times. When I looked up the interaction it was ranked as serious. I emailed my MO immediately and told her I'm stopping this drug and going back to a aspirin until next week when I meet with the vascular surgeon who has been dealing with the clot.
I think the reason I am so mad is because this happens all the time with my MO. I have heard all the other stories and it seems there are a lot of them out there. My sister said "don't be too mad, because you MO probably didn't even know this." I said then she shouldn't be prescribing medications she is not familiar with. I am most upset about the platelet issue. She should have used her common sense like I did. You would think if a medication is thinning your blood, your platelets might be lowered.
Ok that is the end of my rant!!!!
I hope everyone is doing well and treatments are not causing too many side effects!
Does anyone think I'm making to big a deal?
Robin
0 -
Robin - I think your oncologist is an idiot. I think your rant is appropriate. But what jumps out is yet another awesome life saving sleuthing job by the Robinator. Go Girl Nice work!!! You are da bomb.
I never stop being reminded that I got no one on my side but me. Does it matter whether she knows whether or not the drugs kill your platelets? A simple consultation with Dr. Google or the pharmacist would give her the answer. You've been struggling with platelets for years! Keeping your bloodwork in order is the cornerstone of your treatment strategy! A phone call, 5 minutes on the computer ... not her priority. A$$hole.
This reminds me how things went down with my April 2017 scans. I specifically asked for scans that were comparable to the December 2016 scans. Had a long discussion. Scans didn't get ordered correctly but I wasn't told this until after the scan and discussing the results with radiologists. The radiologists saw the order but they actually just do what they consider standard practice and not what the onc specifies in the hospital I am in. The onc was sort of aware but did not understand the difference, didn't tell them to do what I asked, did not discuss it with me. After the scan, I asked questions about the specifications of the scan. They hand waved, obscuring the fact they had screwed up. I didn't fully understand that they pulled the wool over my eyes until I re-investigated with the help of a radiologist not associated with that office. I investigated because we had missed major progression in my liver. I was on letrozol and Ibrance for 6 months when it was doing anything and suffering from side effects the whole while. A$$holes. It's just a job for them.
I don't agree with your sister but I get to the same place a different way. I don't think your MO is going to change. You have to accept her for the half-assed practitioner she is or fire her and hope you get someone better. That may or may not happen. I'm so fed up that I am taking my chances and switching oncs and hospitals. It's a huge amount of work and who knows if it will help.
There is a saying about the classic breakfast, bacon and eggs, that comes to mind when this stuff happens. The chicken is involved but the pig is committed. Our relationship with our oncs is that way. They are involved but not committed. Nothing is really going to change that.
>Z<
0 -
Robin - rant on! I know you are struggling with platelets, but carbo is working for you so you need to stay the course on it. I am sorry she didn't understand the interaction with Eliquis, but this is (sadly) an example of we need to be our own advocates. I had an issue yesterday with my jaw met - the numbness seems to be moving from my chin to my lower lip on the left side. My PA said I had an eye infection, and the Eye Dr correctly said looks like 7th cranial nerve might be swollen. So I am off for a MRI with contrast tomorrow morning at 8:15am - one day before I head out for Sundance. And since no good deed goes unpunished, they moved my PET up to tomorrow at 11:00am right after my MRI. I am not happy about all this rescheduling, but hope my onc can review everything with the eye dr and get this sorted out. It is always something with Mr C. Nevertheless, my TMs are the lowest they have been in nearly a year.
0 -
Robin, are you going to fire her butt? I'm sitting here fuming on your behalf, and Zarovka's too. Robin, I agree that your onc should not be prescribing if she does not know and will not even do the basic research her patient had to do on her own. Well-done you! It is a big deal because low platelets can delay your cancer treatment. If you have to stay with her, can you get a smart pharmacist who will work with you? How can these people go to that much college and earn that much money and then mess up things that even we non-doctors understand?!
What is going to happen to us if we become too ill to do our research and double-check everything?! And hospital staff and residents worry me even more. I'll never forget lulubee texting her onc on the sly when the hospital idiots were not ordering the right tests to diagnose her pericardial effusion. She saved her own life.
0 -
lalady - that is one brutal scanning schedule. sending prayers and strength. and isn't it fun when practitioners make wild guesses at what is going on (thanks Physicians Assistant!). but you got a referral to a specialist who knows what they are doing. they'll get to the bottom of this while you schmooze with with the Beautiful People and artists at sundance. relax and enjoy. So this is your actual job?
>Z<
0 -
Oh my, lalady. So you have to do the MRI fasting in anticipation of the PET, and then start your trip without much time to catch your breath. You are Superwoman.Yeah, let them figure it out while you enjoy Sundance.
0 -
Z - You nailed it on the head...IDIOT!!! I can't even know how pissed you were about this screw up in April. And the fact that you progressing due to screw ups? WTF?? You are so right though, they are there for a paycheck and go home to their families at the end of the day. I know how stressful switching MO's can be, I have done it 3 times. I have been with this one the longest!! I guess I stay with her because she is so open to my suggestions. Going back on Carbo was my idea, she wanted to try something else. She is nice and seems to be a caring person, but I just don't understand all the screw ups. One thing I do know, she takes on way too many patients. I need to understand that my MO is not going to change. It is was it is!!
Claire, Hey there!! Yes Carbo works for me but I have to stop treatment when platelets go too low. When I did Carbo in the Fall, I had to miss 3 treatments back to back. You can't control the cancer with so many skipped treatments. This is when my MO suggested the Oliparib trial. I am doing lower dose chemo this time around with Carbo and was hoping it will help with the platelets. I have 3 treatment behind me, but had to skip today's due to platelet count of 50. That darn jaw met....UUUUGHH. Your PA sounds like they may be related to my MO. Hahahah. It sounds like the eye Dr. has it right. Hopefully you will get this resolved soon. Have a great time at Sundance....take a lot of pics for us.
Shetland, I waffle back and forth about firing her. Right now i'm in a bit of a crisis, because I went on the Oliparib trial and it didn't work. So there was a lot of progression that I have to beat back. I was fuming earlier, but putting it all down in words to vent, did help me to calm down a bit. My MO does have some positives and that is what keeps me there. Your idea about a pharmacist working with me is a great idea. That would help a lot!!!
Thanks for listening ladies, I feel much better.
Hugs to you all.
Robin
0 -
"What is going to happen to us if we become too ill to do our research and double-check everything?! " I think we know the answer to that question.
Keep your head in the game ladies.
Robin - My soon to be former onc has way too many patients as well and that is the crux of the problem. Not a problem i can fix.
Here's to your rising platelets and continued success on Carbo ... all due to you and your tireless research and attention to your own care. I am so inspired by your story. It's maddening but it's also a HUGE step forward that you figured this out. As soon as you are done stabbing effigies of your oncologist (necessary, appropriate, you have our full support), get your mind back to the path forward ... how are you going to control those clots without slamming platelets?
>Z<
0 -
Totally appropriate rant Robin and good confirmation of need to be own advocate and willing question and research when you feel something isn’t right. Frustrating for sure, but necessary and not just for cancer.
Lalady sorry you have to rush for tests before going to Sundance. Seems like things like this frequently happen before travel, at least that’s been my experience. But like you said hopefully with this they can get everything sorted out.
I saw my onc today and asked about my thinning hair. She suggested Rogaine for women. Has anyone tried it? I also asked if there was something that would help my eyelashes grow back as they barely did after my 2015 chemo and she said she could prescribe something called (I think) Latrice. Something to think about. I was going to ask about refreshing the permanent makeup for my eyebrows (another post original chemo issue) but decided I’d covered enough appearance questions for the visit.
My onc’s going to order my next chest CT, abdominal and pelvic MRIs for March. I questioned whether I need all 3 every time since mets so far are only in liver and she said she thinks it’s important to have the same scans every 3 months, preferably from same facility, so she can compare “apples to apples” in monitoring any progressions. My tumor markers are down a bit but not dramatically lower.
Like many of you I’ve had an endless cold, then a sinus infection over past 2 months. It’s been a bad cold/flu and other virus season. I’m hoping all of us get over these health issues and don’t get any more this season.
Best wishes to all and in particular those dealing with progressions and treatment decisions. I don’t post often but am reading regularly and keep you all in my thoughts and healing meditations.0 -
Liwi - I think, well I've had 2 viruses so I can't possibly get a third. Then I get a third, so I can't possibly get a fourth viral illness. Now my daughter is next door with a fever of what is probably the start of the 5th virus to sweep our household. What a year for us. Stay well.
Thanks for the hair suggestions. Trying an herbal shampoo that gets solid reviews on amazon. So far so good ... no wads of hair in the drain yet. But Rogain is on the list. The generic is available and cheaper.
>Z<
0 -
Robin,
Sorry to hear your confidence in your mo is shaken.
It is difficult because we all rely on their expertise and knowledge; if they fall short we are the recipients of an error which can cause harm.
Have you considered having a separate md who is only a hematologist for the clot? Also adding a specialist md who evaluates interactions of all your medications, both prescription and any other pills or supplements that you are taking with the chemo protocol. Another add is a cardiologist since some treatments can effect the heart.
This approach breaks up a reliance on a singular md in your treatment , methodically helps in your decision making and plans.
My approach is separate but coordinated care.
I ocassionally discuss treatment options with a consulting mo from another facility who has access to my records.
Kathy
0 -
the FDA approved PARP inhibitor. Here is announcement.
http://www.breastcancer.org/research-news/lynparza-approved-for-her2-neg-brca-mets
0 -
Thanks Hartrish - here is a summary of the results for oliparib ... not the response rate when combined with immunotherapy.
Two advances in PARP inhibitors continue to expand our regimen stockpile against BRCA-mutated breast cancer: the Phase III EMBRACA Trial found that PARP inhibitor talazoparib improved PFS in BRCA-positive patients, impressively reducing the risk of disease progression or death by 46% versus chemotherapy. And the MEDIOLA Trial showed that a unique combination of the PARP inhibitor olaparib (Lynparza) plus the immunotherapeutic checkpoint inhibitor durvalumab (Imfinzi) elicits a disease control rate of 80% (!) for pretreated patients with germline BRCA-mutated, HER2-negative metastatic disease. These are truly breakthrough findings in the treatment of BRCA+ metastatic disease.
My notes say that oliparib demonstrated efficacy for women without the BRCA mutations but I can find the reference for that. Most trials have focused on women with BRCA mutations because it is a subset of cancer that is known to have damaged DNA.PARP inhibitors block DNA repair in cancer cells. Women with BRCA mutations are more likely to have damaged DNA with duplicate strands because the BRCA mutation enables DNA damage. There will be women without BRCA mutation with that level of damage in the tumor DNA and it's really that entire class that can benefit from the drug.
>Z<
0 -
I love this group because you all have a plethora of information and although I try to find it on my own, it's easier and more reliable to get it from people who are living through this.
I reported earlier about my having an ultrasound and CT scan to determine if I had a blood clot. Both reports indicated that I have "multiple hepatic metastases measuring up to 7.1cm in segment 2 and have all increased in size." The CT report went on to say "Moderate diffuse fatty infiltration of the liver is present. Small gallstones are in the gallbladder. A 1.2 cm left adrenal adenoma is unchanged. Multiple left axillary lymph nodes measuring up to 1.6cm in short axis have decreased in size. Mild thoracic spondylosis is present. A 1.1 cm soft tissue lesion in the inferior right breast at 6:00 position is unchanged. Surgical changes of the left breast are demonstrated".
I questioned my onc about these results because 1. I didn't realize I had anything going on in my right breast. The cancer was in my left breast and is now NED. 2. I haven't had surgery other than a biopsy and marker placement in my left breast. 3. How many is multiple hepatic metastases? 4. Are you sure these are my results?
She asked another radiologist to read the results and he came to the same conclusion. Answers to my questions. 1. It's been there from the beginning but is the least of our worries. 2. The radiologist was referring to my biopsy. 3. Multiple means there are too many to count. 4. Yes these are your results.
My liver enzymes yesterday before chemo were AST-93 and ALT-123 which are basically stable from 2 weeks ago. This week before chemo, I was experiencing sharp pains in my upper abdomen and felt very full after eating. I was also foggy brained, teary and fatigued. I understand I the cancer is progressing and I know none of us have crystal balls, but damn I am worried that I won't make it to the 33 month average.
What are your thoughts on these results? What else can I do? I asked about milk thistle and really already knew my onc's answer...it won't help but it won't hurt.
I am feeling anxious and somewhat defeated.
Kay
0 -
Kaylynne. I can feel your shock after you heard these results. I hate MBC. I have a PET next week and know I would feel overwhelmed if I have progression. I have no ideas about other TX or supplements, but I know someone on this thread will chime in.
Are you having your TX in OKC or are you down here (Dallas )?
0 -
I am staying in OKC.
0 -
Kaylynne, I see you are on Carbo/Gem and this is an awesome combination if you can keep your blood levels up. Did the progression occur while you were on your current treatment?
Robin
0 -
Kaylynne, does your MO have a plan for the next treatment? Triple negative BC is much more immunogenic than hormone positive, and there are clinical trials for immunotherapy. You can research trials at cancer.gov. I know that Mayo clinic has one going in many locations involving a vaccine. Have you had genomic testing done?
I can empathize with your anxiety and defeated feeling. It has been a tough time on the threads with losses of our sisters. I am currently waiting to see if Falsodex is going to work for me. I am also having right abdominal pain and some generalized back pain, so am imagining that the cancer is running rampant. My scan will not be until March.
I wish you strength and peace as you digest this news and get a new plan in place. I'll see if I can look up some trials. Love, MJH
P.S. Robin, how could your MO not get it about the platelet thing? Asleep at the wheel. Always have said- we all need to be our own advocate. MJH
0 -
Shetland, you wrote: "I'll never forget lulubee texting her onc on the sly when the hospital idiots were not ordering the right tests to diagnose her pericardial effusion. She saved her own life."
Yes, great memory you've got! That was one year ago this week. Can you believe it? Thank God for echocardiograms just-in-time, emergency heart surgery, and Taxol... I'm still here.
0 -
Robin, I was off treatment from Oct 31-Dec 7. My onc thinks that is when progression occurred. I’ll have a PET within 2 weeks that I hope will show no more progression and hopefully some shrinkage.
MJH-I’ve tried to get into a few trials and it’s not worked out. Texas Oncology in Dalllas has an immun 132 trial available but I’m weary of the time I’ll be off treatment before getting approved. I’m hoping gem/carbo is effective and I can stop worrying for awhile. I want to believe I have time
0 -
Kaylynne, I am in the same boat as you. I had a complete response with carbo and it brought my tumor markers down to 80. My MO said I needed a break from Carbo because it was killing my platelets. So she suggested the PARP trial with Oliparib. After the washout period and waiting to get started and the trial not working. I was off treatment for 2 months and my cancer grew faster than it ever has. Now my tumor markers are 423. It's amazing how fast mine grew. I am thinking about getting another biopsy to see if it flipped to HER2.
What is your carbo/gem schedule? I did low dose carbo weekly with 3 weeks on and 1 off. My TM's would drop by about 70 points a week. I pray you have the same thing happen. I asked my MO to do TM's weekly because I wanted to see the markers fall to give me some peace.
Have you had a TM done since starting this regime? I have high hope for you on this because I have heard it's a good regime for triple negative.
Prayer for peace and healing.
Robin
0 -
Kaylynne- I looked and saw that there are trials at the medical centers in OKC, but you are closer to Dallas? I am praying that the gem/carbo works for you STAT. Love and hugs. MJH
P.S. Oliparib is just approved for TNBC, but I don't know much about it. I see that Robin was in a trial with it.
0 -
Z- My mind is already on the path forward as I have an appointment on Wed with the vascular surgeon who put the port in and took it out and inserted a stent. I thought the clot was supposed to have been done with, but it showed on PET/CT. I will talk to him on Wednesday about my options to rid myself of it. I really don't think I have a problem with my blood developing blood clots. I had a platelet infusion the day before the clot came up. A very intelligent nurse at Sarah Cannon said you should not get platelets unless you are 20 and below on platelets. She said any higher than that you run the risk of a clot or stroke. My platelets were 45 when my MO authorized for me to get platelets. I had asked for them, but I did not know anything about the risk.
Liwi, Yes it was a perfect example of being you own advocate always!!! Sad that I have read so many stories like mine of this site. Let's all remember that we MUST always be our own advocate.
Kathy, Yes my confidence in my MO has been shaken again!! I actually am seeing a vascular surgeon on Wed since he put the port in and the clot was near the port. I am considering a 2nd opinion at a large cancer center. Also I am going to ask my pharmacist if he can work with me on my medications and any interactions. Thanks for your input.
MJH, Asleep at the wheel for sure!! I sent her an email last night about the oversight and she didn't respond today at all which is not like her......unless she forgot, and she forgets stuff all the time. But I am afraid I have ticked her off because this is not the first time I have pointed out her oversights. She made a joke last week that I needed an employee name tag.
Robin
0 -
Oh, Geez! So much nutszo stuff going on here. Robin...really, what a mess! Babs, sorry you are having to deal with so much. Too tired to update on me at this moment. All in all okay and just waiting.
Kaylynne, I definitely think you should go for the IMMU132 trial when you find a place of stability and are ready for it. Or maybe you'll just be able to get it when it's approved, before summer 2018 I was told at the trial center. Right now you are not eligible with a tumor dimension over 7 cm. Stay strong with gem/carbo. Hoping it does great for you.
I am hearing from multiple oncs that PARPs are not a great choice for TNBC without BRCA mutations. Maybe as a last resort but there are better options still for me (and you Kaylynne) at this point.
Take care all!
0 -
I’m amazed at all the mess ups by so many oncologists. And yes we all must be our own advocates. You women have more strength and are smarter than some of these dummies!!’
Today I had the mapping for my Y 90 on 2/20. All went smoothly. Long tiring day. My only issue was that they tried 4 Times to get an IV going but had to resort to using my leg . I don’t understand why they don’t listen when I tell them it won’t work from a certain area and try any way!!! I told my DH the next time anyone tries to go to an area I say no to I’ll physicslly stop them or leave. My one good arm hurts and is very black and blue.
You women rock!!!!
Babs
0 -
Ok ladies - testing to see if snow kills Mr C. lol I'm in Park City with a load of white. Had MRI and PET yesterday, I was very tired, so my Dr brother drove me. I have my last A-train on Thursday then see onc on Friday. Staying positive as I feel ok despite jaw numbness. Rooting for all of you with scans. Robin - I hear you on my PA might be related to your MO- will bring ancestry.com test with me next week. lol Hang in there with carbo! Z - you are a warrior! Ditto Babs and Kay.
(()) C
0 -
Claire, that is so darn funny! I laughed when I read you would bring the ancestry.com test to your PA. HAHAHAHAHHA
0 -
It's very likely that an entire tribe of morons went into oncology. Good point.
Lalady - way to get it done. Fingers crossed for the most boring scans ever. Waiting with you. So glad you feel okay.
>Z<
0 -
My wife's latest MRI, she talked to her Oncologists office and had them confirm with the MRI clinic that they would use the correct contrast dye for her liver. She did this because on another occasion, they used the wrong dye and the results were useless. When she got to the MRI clinic, they told her they were using the other contrast dye. They lied and told her they didn't even have or use the other contrast dye. They asked my wife if she would like to proceed anyways. My wife, being the wonderfully insistent patient that she is, had them call the radiologist, who confirmed her choice of contrast dye, and magically they had the right dye. If this had not occurred, the MRI would have been completely useless, as had happened previously on one occasion. As a patient, you really have to know your stuff, and double check that the professionals are doing the right thing. What a waste of time and precious resources to wait 6 months for an MRI and not have them do it correctly, even when they were supposedly told ahead of time how to do it.
0 -
Husband11 - What idiots.
>Z<
0
