How are people with liver mets doing?
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moth: Congrats on the improved neutrophils! Whatever works!
Regarding gabapentin - I have been taking it lately because, on top of everything else, I have a torn rotator cuff. Very painful. I was scared of the gabapentin making me sleepy and wouldn't take it when working but with that shoulder.... I was in "I will take anything!" territory. I was kind of restricted due to my chemo meds and brain mets (no steroids, only very minimal NSAIDS). So I started taking the gabapentin. I was pleasantly surprised. It was not over the top effective but I think it helps and I really didn't feel like it had bad side effects either. Some drugs wipe me out, but it did not seem to make me sleepy. I take 100 to 200 mg at a time and up to 3 times a day. I increase or decrease based on pain level. I do tend to take some before I go to bed - and some benedryl. I think the combo helps with pain and helps me sleep. People seem to have a lot of very different expereinces with gabapentin. My thought is try it. You can always quit using it or use it only at night if it is not helping or makes you sleepy. Good luck!
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Dear Moth, for sure it was Filgrastim that made Neut shoot-up into double digits. Sometimes it is hard to predict how many shots you need. My wife was okay with 3 injections of Filgrastim at the beginning but after 18th chemo (Docetaxel) she was needing up to 5. Once her Neut were at 37.0... The schedule of administering Filgrastim is very important - this is how you avoid these high numbers. High numbers are nice to get chemo but then bone marrow is hugely stressed as it "pumps-out" so many neutrophils at once. Bone marrow produces neutrophils constantly but stacks and keeps them and releases only in limited numbers in normal situation, so Filgrastim pushes bone marrow to release the storage of neutrophils. After many times marrow can get tired, so it would be best to keep these numbers below 10... You have to observe yourself. Usually when bone marrow starts to release a lot of neutrophils, flu-like symptoms (tiredness, bone-pain, maybe even slight temperature rise) are felt. If these are felt, no more Filgrastim is needed. I say all of this because I know that some doctors prescribe 4-5 shots and do not observe that some people need just 1-3...
Dear Lumpie, if the time after using docetaxel (Taxotere) is >1 year, it can be easily reintroduced and can work wonders again. My Sandra had that - docetaxel was reintroduced into HP for local progression only after 9 months and controlled (almost wiped out) the disease wonderfully...
Saulius
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Saulius, the 37 made me feel like my 17 wasn't so crazy. In 2018 I was on it for 5 days/ week and doing daily bloods and it would be like 1.1; 1.1: 1.2, 1.0, 1.1 ... just ridiculous.. We even changed from a biosimilar generic to the way.more expensive original but it wasn't significantly better. Without them I'd slip <0.5 so it did help but nothing this strong.
I'm moving up to 3 filgrastim/ week. Timing is important for us for an additional reason because the trial doesn't allow making up a skipped dose. So we might be playing with timing to have it closer to the day prior to chemo.
I'm just glad these drugs exist becasue they changed the chemo protocols and their effectiveness so much.
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sounds good moth! I hope they can keep you on schedule for the dosing! 🙏🙏🙏
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Lumpie, Have you thought about having TACE done??? did the IR speak to you about that? where exactly is the tumor located is it near the colon wall?
Thanks ladies. I took them both. The Ativan Knocked me out...kind of like a Benadryl...I slept straight through the night so deep that my body didn't wake up to pee and at 6am my bladder was killing me.lol. I went back to sleep till 8 am. and now I kind of feel like I have a Benadryl hangover...ya know very latheragic but relaxed...I think I am going to only take it at night at first. I took the gabepenten last night and this morning its an every 12 hour pill. I do feel a little.....like high...but not high I can't explain it. LOL. anyway I am feeling a little better today PRAISE GOD all my calling out to him to rescue me and to let this trial be training for me...I did turn to Him so that is good.
Love you all!!!
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Nicole- Glad you got some rest and peace with the meds. Maybe I need those meds. Haha. Really.
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labs are back. No need for transfusion yet. I’m holding steady ( still very low) but steady.
My tumor markers are all the best I’ve seen forever. Numbers seem to indicate I will be done with my hemolytic anemia crisis in the near future. I hadn’t expected it taking over a month and 5 units of blood to correct it.
Holding out hope this will be a blip in the near future.
Take care everyone. mall of you are in my thoughts
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candy - I read your posts on ibrance thread and mels living room & IMO you need something. Your pain is not well managed. You're sore and hurting. That's what I got the gabapentin for - muscle and bone pain. it's made a huge diff. When pain is mild I use it on its own. For breakthrough I use Advil. Don't ignore ongoing low level pain because it will DRAIN a person physically and emotionally. I have hydromorphone as a back up but haven't needed it. I like knowing it's there tho!
Pain is not something we need to put up with or accept. We need to treat it.
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LFF - oh happy news! So glad to hear of the good tumor makers and anemia improving. I'm finishing my morning coffee so "Salute" (I'm learning Italian on duolingo ☺)
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moth, et al: Regarding colony stimulating factor: I have used Zarxio. It has worked wonders and been easy to tolerate. It's a biosimilar for neupogen.
BSandra: Good to know....That is what I was thinking about the taxane. I last had taxotere in fall of 2017 so it has been a while. Not super excited about losing my hair again but better then being dead. At this point, I don't have much hair anyway.
NicoleRod: Glad you feel better. Benedryl is good stuff. I thought they weren't doing much TACE these days. It was my understanding that Y90 it preferred/more effective. Sometimes, it just depends on what the doc is trained to use. I have talked with the IR. She dismissed the TACE but said Y90 was a viable option. Maybe that was just due to my cancer type and location. It's whack-a-mole....I've had tumors all over my liver. One was on lower outer edge against colon which is why they could not do ablation. Current tumor is approx in the middle of the right lobe.
I have been researching radiation/CyberKnife. Wow. Studies sound great. Which is pretty much what the Rad Onc had told me. These consistently indicate that tumors up to 6 cm can be treated so I am hoping size and location of my tumor will still make treatment possible w/o having to shrink it with radiation first.
Nurse from MO's office called. She thinks we may have to do some chemo to shrink the tumor before they can irradiate it. Even if I do not do a taxane, I will have to be on something systemic. She does not want to do a taxane. Options are Enhertu and Tucatinib/Herceptin/capecitabine. Questions:
1) Anyone been on Tucatinib/Herceptin/capecitabine? How is it?
2) I am a little concerned about Enhertu because I had some liver damage on Kadcyla. This is a known hazard for a % of patients. Bounced back well once I came off it. A friend told me she had gotten early reports that those who had liver damage on one antibody drug conjugate, like Kadcyla, were at risk for having it on others, like Enhertu. Anyone else heard this or have sources?
3) Anyone who has had CyberKnife to liver.... do fiducials (markers) have to be placed? Is it pretty much like getting a biopsy? (ugh)
Thanks!!
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Thanks moth for caring. Between the AI use, the bone mets, chronic disc issues in my low back, and untreated rheumatoid arthritis (rheumy stopped med with cancer diagnosis and will not restart) I do have a lot of pains. My PCP did recommend gabapentin. I too, like Nicole, read horrid things about it. And I just didn't want to go that route-- taking meds three times a day every day, and all the side effects. That is all the doc was willing to give though. Nothing used "as needed" for the pain. Just told to use Tylenol. I could never get a script for hydromorphone, or anything like that, from my docs. No narcotics in this day and age. I don't know, maybe I am my own worst enemy. Take the meds, be a "little high", and not hurt (or don't care if I hurt).
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Candy,
I just had a thought. What if you ask your new MO for a referral to a spine doc at the cancer center?
I am having an MRI of my entire spine tomorrow, recommended by my old radiation oncologist after she reviewed all of my recent scans. She said that it would give a better picture of what is degenerative and what is disease (or healed disease, since they are all supposedly sclerotic) in my spine. After that, she said she might suggest that I go and see an orthopedic doctor who specializes in spines and who works with cancer patients. This wasn't what I was originally looking for -- I was trying to find out if anything could be treated with SBRT or something like that -- but I do get pain in one distinct place in my lower back, and I'd like to know if there's anything that can be done for it. So I might follow up with this guy after we get the results back.
Anyway, since your local person is reluctant to treat your rheumatoid arthritis, perhaps someone at the cancer center would feel otherwise? On another thread on BCO, I just read that someone was told "no more colonoscopies" because they are Stage 4. This also caught my eye because I have a colonoscopy scheduled for this coming Wednesday. ( I have to have them every 5 years because I had an ademonatous polyp on my very first one.) No doctor has ever told me to stop doing it -- my MO says to do whatever you need to do health wise that's separate and apart from my breast cancer.
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Yeah, gbapentin needs to be taken consistently for it to work, it can't be used prn. Some people only take it once a day.
The whole opioid thing needs a rethink. I'm sorry your doctor are so reluctant. Can you get a referral to palliative pain doctors? Or maybe you don't even need a referral. Heard some will take cancer pts automatically and develop pain management plan.
My oncologist and my GP both are fans of opioids lol. As I said to someone, becoming physically dependent on an opioid is the last of my worries. It was same when I did clinical rotation with geri pts. Who cares that they're on massive doses of opioids if it keeps them shuffling with their walkers to the bingo room and the chair yoga class? It's a good thing! Random over prescribing post op or for minor injuries *is* a problem but denying meds to chronic pain and cancer pts is malpractice imo.
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Hey - slight chaos in my treatment world. Just got off phone with MO and my clinical trial is unblinding early, and might shut down, unclear yet. All due to results reported out from another trial of Tecentriq and taxol. As of now both of us agreed to just stay with it as it's working for me and well tolerated. I did find out I was in the placebo group for the ipatasertib which we all sort of assumed as I had none of the side effects.
If they do shut it down, Tecentriq access would be tricky. It's approved but not covered by our health plans. Current Roche compassionate access requires that you can't have used it before - but maybe they'd make an exception for people from their own trial.
End of the day I think we still don't know if Tecentriq is improving things or not. Earlier positive trials were with abraxane and not taxol so who knows 🤷 Maybe all my response is just to the taxol.
This is why we need more RCTs!
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Thanks BevJen and moth. We do not have palliative care or pain management in my area--rural, and yes I asked. And, yes, my rheumy (and PCP) are hesitant about meds. I have thought about those things when transferring care to the new Cancer Center-- much bigger and more to offer. Right now I am dealing with the low ANC/ tweeking Ibrance schedule issue. I have only met with the new MO once-- July 13-- but I have sent SEVERAL messages to the nurse concerning this whole white count thing. I fear I am ticking them off, actually, with questioning the MO's order to continue the cycle with an ANC of 700. I see MO next at the end of Sept with scans-- Sept 28. As we move forward, I do want to ask about a referral to pain management, palliative care, maybe ortho/spine oncology. But, right now, I need to get this blood count thing situated.
I do wonder about the Stage 4 label. I have told my PCP over and over I have horrid GERD. Nothing ever said about seeing GI doc or doing a scope. Just "take Pepcid". I have not started the colonoscopy routine yet. I do do mammograms of the remaining breast.
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The scan reports are in. There is some shrinkage and some minor progression. It means the current drugs are keeping the cancer to a slow growth but not getting overall control.
No cancer to the bones. Yay! The larger liver spots that were treated with y-90 and bland embolization are still shrinking! Yay!
There is one spot in the liver that grew very slightly (+.3mm), and one very small new spot on the lung(7mm). Boo! I had many diffuse small spots in the liver that did not light up on the pet 3 months ago now there are more.
I will talk to the radiologist next week about the lung spot that had radiation and see if she thinks I should target the new spot with SBRT or just wait
My local MO considers this a mixed report but I get to stay on my current meds for now. He suggests we start evaluating what treatment will be next, (clinical trials) but I have time since it is growing so slowly. I will consult with my MDACC doctor for her opinion after they read the scans in Houston.
I am so grateful that I am feeling good. 🙌🏻Unfortunately, the cancer is still there and we must continue looking for the secret sauce to get rid of it. 😉
FYI- My local MOs only advice was I should start looking and said that since I do so much research he will support me but would not give any direction. He said to talk to my MDACC MO have them look through their trials. Told me to check in with the Neuroendocrine trials I have had in my back pocket. I left frustrated. 🤬 I gave him a printout of my research and asked if he would take some time to look it over. He basically said he was very busy. But to come back in 10 days to tell me what I find out about clinical trials.
Dee
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Things are moving fast today. We have picked my poison: Enhertu aka DS8201. We'll see what the Radiation Onc says. If he says we can do radiation first, we go with that. If he says do some chemo first and circle back, we do that. I meet with Rad Onc on Thursday. I have a tentative infusion schedule for Friday in case needed. Very good to have a plan.
Anybody gotten Enhertu? How is it? Thanks.
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Candy, I am not knowledgeable in the medical field, but through experience for me Pepcid does not help my GERD at all. I take Prilosec (omeprazole) and it works great for me. They work differently on the body which is why one works and the other doesn't. The general literature all say take Prilosec for only two weeks, but I have been on it for four years without any trouble. My oncologist says for cancer patients, sometimes they prescribe meds differently since we will always be on some medicine to manage the disease. It should be up to your oncologist so she can monitor any problems, but it is all that works for me. You can get it over the counter but my MO writes me a prescription because my co-pay is cheaper.
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Into the light...I don't know anything about that...is it chemo??
Dee...YAY about the stuff shrinking and BOO about your the stuff that's not! I hope you get into the trial you want.
Candy, I took the gabapentin last night.if you MO recommend it I would try it...and today and I am taking it again until my mouth is healed but I will say I feel ok on it and my mouth is making progress today so I think the Valtrex is finally kicking in...a nurse on FB did tell me between day 3 and 5 of it should see some results today was day 3 of it.
I guess my MO was right not doing the chemo yesterday.
I am thinking about looking into Cyberknife instead of TACE....for the 1 tumor in my liver 4cm... any thoughts????t when I called my IR's office to ask they said IR"s don't do it... RO's do???
So opinions on Cyber/SBRT vs. TACE?
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Lumpie-So good you have a plan. I took one week off Afinitor during SBRT. Only because MO was very precautious and wanted to avoid lung toxicity (possible SE of Afinitor)
Hoping you get the SBRT approved and start right away on your Enhertu.
Dee
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limpid- I am on tucatinib and kadcyla so I can’t help you. The results of tucatinib with herceptin/🙁perjeta/xeloda have been amazing. Good to have in your back pocket.
I believe the kadcyla is what causes me issues if I have them. Tucatinib has been fine.
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Lumpie, I wanted to reply to your Tucatinib/Herceptin/Capecitabine question, since that's what I'm currently on. I see your plan now is Enhertu which I haven't done, but thought I'd still chime in for future. I just started my 2nd cycle of THC and so far, the combo has treated me pretty well. I scan in another month or so and I'm hoping it'll be as successful as my MO expects. Good luck with your new treatment.
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Dee. I hate mixed reports. When is your next appointment at MDA? I'm glad that they have the final say on what to do next. Your local MO visit did sound frustrating.
Question for you. On my MRI report my IR referred to a couple of untreated areas in my left lobe that concern him. Does untreated mean new? I'm assuming it does. I think he has notes on what areas he did and did not treat with y90. So, if there was not a lesion to treat, in December, then whatever he's seeing must be new, right?
The controversy is that the radiologist at UTSW did not mention anything in the left lobe. Of course, I'm left to wait and wonder for the next three months. UGH
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grannex- I obviously have not had Y90. And cannot speak to that.
What I can say is that when it comes to my liver, there is always a spit or two that none of my care team mentions. Then I get a report and read about it and have to ask. most recently. I was told that due to all the treatment I’ve had ( liver resection, taxol, kadcyla, xeloda, herceptin/perjeta) my liver will be a mixed bag. Some old scared and dead tumors will always be here, some tumors will be alive but stable and very slow growing and that I do t ever be NED. Not what I wanted to hear but something I could understand a bit.
For your sake, I would ask your clarifying questions ) are they new? Stable? Slow growing?) they are your healthcare te so don’t feel bad insisting they give you answers. There might not be a clear cut one and they might have to watch the new ones to see what is happening.
I s as m so sorry for the lack of answers and hope you get the answers you need soon.
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Grannax- can’t your MO put the questions to the radiologists? You shouldn’t have to wait 3 months. I had MRI questions as something “New" suddenly appeared on the report. She got a radiologist to read my reports and we found that they were not new, just small and stable. One radiologist reported it and one had not.
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Grannax, I agree with HopeandGratitude, you shouldn't have to wait. I think too what's reported depends on the radiologist. Sometimes my reports are so detailed by one, which I appreciate, and then the next one doesn't detail much at all. I'll ask my MO and she'll call that radiologist who'll say "no change, so didn't see the need to mention." No, I want to read it all! Details, please. Can be so frustrating.
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Thanks everyone who has chimed in on my situation. I appreciate it.
Bliss58: Thanks for the insight on your experience with Tucatinib/H/C. That is now my "reserve" treatment. Glad to hear that it is a tolerable treatment for you.
NicoleRod: There are new studies out about CyberKnife for Tx of liver mets. They are astoundingly good. I think that mode of treatment is starting to get some traction. I will post links. I had CyberKnife for brain in July. It's not that different from getting a series of x-rays or having a CT scan. With the CyberKnife for brain, I had to have the face mask/head helmet. My sessions were about 12 minutes long. I had quite a bit of fatigue but ... nothing a lot of napping won't take care of. I can think of worse. It is the radiation oncologists who administer it. It I get tx for liver, I will report my experience.
Re GERD: I find a combo of Omeprazole and Tums to be best. I haven't historically had a lot of GERD issues, but some. Lately I have trouble with carbs. Fruit, veggies and meat seem to be ok. Carbs and any "enhancements" to food give me GERD. Forced healthy diet.
Candy-678: I have a little oxycodone on hand for breakthru pain. You are a cancer patient.... with untreated RA! They absolutely should let you have a reasonable amount of narcotic pain killer. I am careful about what I take but when things were really bad, I found that a small dose allowed me to sleep. Being able to get some quality sleep made all the difference.
Dee: In my experience, sometimes it can be a mixed with our MO's letting us take the lead vs feeling like we get no guidance. If I have leads, I try to narrow down the issues and discuss them with my doc that way. Examples: "I am concerned about the hepatotoxicity of this drug" or "I would like to better understand the mechanism of action of that drug." That lets my doctor feel like she can provide guidance on the issue of concern to me. On the hepatotoxicity, she consulted an oncology pharmacist to get her input. Most of us are so far out on the treatment regimens, there are few clear answers. The docs who are inflexible and can't explain the rationale for their recommendations scare me more.
I feel for everyone on radiology reports. It seems like a big crap shoot sometimes. They mention different things, they don't comment on something that was of concern last time. Sometimes MO's follow up on questions. Sometimes they just go with what's there. When I had my brain met, the RO looked back at my scan from 10 months earlier (which has said all clear). He said it was clearly there. Small but there. Arg.
Another wacky question: They tested my B12 in July - not sure why. It was sky high. The doc told me to quit taking supplements. Thing is, I don't take supplements. Of course, I consulted Dr. Google and s/he say that high B12 goes along with liver failure and other liver diseases. Has anyone else had this tested? Wondering if it could be a meaningful marker...? Thanks.
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I posted this article over on the non-BCO breaking news threat but wanted to post it here, too, because the results are so good.
Stereotactic Ablative Radiotherapy for the Comprehensive Treatment of Oligometastatic Cancers: Long-Term Results of the SABR-COMET Phase II Randomized Trial
PURPOSE The oligometastatic paradigm hypothesizes that patients with a limited number of metastases may achieve long-term disease control, or even cure, if all sites of disease can be ablated. However, long-term randomized data that test this paradigm are lacking.
METHODS We enrolled patients with a controlled primary malignancy and 1-5 metastatic lesions, with all metastases amenable to stereotactic ablative radiotherapy (SABR). We stratified by the number of metastases (1-3 v 4-5) and randomized in a 1:2 ratio between palliative standard-of-care (SOC) treatments (arm 1) and SOC plus SABR (arm 2). We used a randomized phase II screening design with a primary end point of overall survival (OS), using an a of .20 (wherein P , .20 indicates a positive trial). Secondary end points included progressionfree survival (PFS), toxicity, and quality of life (QOL). Herein, we present long-term outcomes from the trial.
RESULTS Between 2012 and 2016, 99 patients were randomly assigned at 10 centers internationally. The most common primary tumor types were breast (n 5 18), lung (n 5 18), colorectal (n 5 18), and prostate (n 5 16). Median follow-up was 51 months. The 5-year OS rate was 17.7% in arm 1 (95% CI, 6% to 34%) versus 42.3% in arm 2 (95% CI, 28% to 56%; stratified log-rank P 5 .006). The 5-year PFS rate was not reached in arm 1 (3.2%; 95% CI, 0% to 14% at 4 years with last patient censored) and 17.3% in arm 2 (95% CI, 8% to 30%; P 5 .001). There were no new grade 2-5 adverse events and no differences in QOL between arms.
CONCLUSION With extended follow-up, the impact of SABR on OS was larger in magnitude than in the initial analysis and durable over time. There were no new safety signals, and SABR had no detrimental impact on QOL.
CONTEXT
Key Objective: To determine the impact of stereotactic ablative radiotherapy (SABR) on overall survival (OS) in patients with a controlled primary tumor and 1-5 oligometastases.
Knowledge Generated: In this long-term report from an international randomized phase II trial, patients who received SABR demonstrated a 22- month improvement in median OS compared with patients who received a standard-of-care approach alone, corresponding to an absolute survival benefit of 25% at 5 years. There were no new safety signals detected.
Relevance: These data add to the growing evidence base that suggests that SABR can improve long-term outcomes in patients with a limited burden of metastatic disease. These results may influence treatment decisions while awaiting the results of phase III trials.
CLINICAL TRIAL INFORMATION NCT01446744
https://ascopubs.org/doi/pdf/10.1200/JCO.20.00818
DOI: 10.1200/JCO.20.00818 Journal of Clinical Oncology Published online June 02, 2020.
{Wow. These are HUGE improvements. If you are oligometastatic, be sure your doctor is up to date on this research. Free access to full article on ASCO website.}
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thank you for the article!
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grannax
I get your scan results frustration. I hope you get your answers soon.
When our treatment plans depend on those scans, we should have every last detail reported!!! Who are these radiologists to decide what is important? that is up to the treating doctors to decide in my opinion. grrrr 😤
MDACC radiologists are very thorough but my home clinic is not. I have pointed that out to my home MO and his answer was “I wish I could train them but I can't ". He will look at them himself and sometimes send them to his favorite radiologist to review. But it is obvious he does not compare my home scan report to MDACC outside review of it.
MDACC doctors showed me the scans themselves every time I have an appointment. My home clinic MO will look at them before my appointment but does not show me the pictures. They don't even have a method to do that.
What's next for me? I will have a video appointment on Aug18 with my MDACC MO. she already has my written scan report from my home clinic but has not commented. I assume she is waiting for MDACC radiologist report which takes about a week once they get the cd.
Believe it or not, because of covid, I have not had a follow up with my RO-not even a video appointment. 🙁He was out of the office for a long time due to no elective procedures in Houston. But he did respond to an email that I sent him reporting the y-90 treated tumor shrinkage.
My plan is to call and make an appointment with the RO because I have a new untreated liver lesion that is growing. PET in May showed nothing at all lighting up in the liver.
In the meantime I am compiling a clinical trial list and contacting them directly except MDACC. My MO has to reach out there.
I really just wanted to rest on mycurrent treatment for 3 more months. Now cancer is all in my face again. I keep telling myself - “one day at a time" and “enjoy each day for the gift it is"
Thanks for letting me vent. Can you tell I am still processing the report of minor progression?🤪
Dee
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