HEART: The message from the heart surgeon at Columbia PresbyterianHospital is that although the aortic heart valve is thick with calcium and has stenosis, the opening has not got small enough for surgery. So, I will have to be monitored and wait till I get sick enough for surgery. No time frame is given. It is a hurry-up-and-wait deal.
CANCER: As mentioned in Update 2, the CT scans done at Columbia Presbyterian Hospital on Friday, 20Jan, showed three new lesions in the liver. It has been seven months since the last microwave ablation with an all clear. Then, there was a PET scan last October showing nothing lurking, that means that in four months' time, three cancerous lesions have grown in my liver. That's been confirmed with a PET scan on Monday, 23 Jan at Memorial Sloan Kettering in Montvale NJ. Then, back up there the following day, last Tuesday, 24 Jan, to meet with the oncologist. to hear what she has in mind and to discuss the future. Meanwhile,
(INFECTION: Also on Tuesday with the oncologist, I had wanted to show her a painful, hard swelling from temple, upward and growing. She did not come over to me and look at it. She just told to go to a skin doctor. I tried to get an appointment with a skin doctor right away as it was rapidly developing into a scarifying situation. The soonest is tomorrow at 8am. Meanwhile I got in to see the GP, yesterday. He believes it is a bad infection and could go all over inside my head! He said words like MERSE and STAFF, prescribed Doxicycline and, thankfully, it seems to be working. He wants to keep my appointment with the skin doctor, just to confirm diagnosis.). Back to
CANCER: The oncologist suggested that I add Ibrance to the Fuvestrant which has been so kind to me with no bad side effects. I am so against Ibrance and asked her for some other similar treatment. She said that Verzenio was similar. I asked for and received sheets in big letters with warnings but no information about how they work. After all the DNA testing, you would think that "targeted therapies" would mean that; something targeted to the individual. I feel stymied. I don't know what to do and am asking for your help. Please!
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You poor thing, you have a lot on your plate! Maybe start by looking at what you can control now? Your heart problem seems to be about timing but you could ask for some help coping whilst you wait for the operation? Fortunately your GP has the infection on the head currently under control but it does appear as though you need to be vigilant with a follow up with the GP. He’s probably only asking you to see the skin doctor because that’s what the oncologist said without even looking at it! Then there’s the question of targeted therapies and Ibrance. These therapies are targeted at certain types of cancer such as breast cancer which has many variations and Ibrance isn’t suitable for many women with MBC. I took Ibrance for 9 months last year and besides some hair thinning it worked very well until my cancer changed from positive to negative! Now I am on a trial drug that could take another 2 months before I know if it is going to work!! In the meantime I am just surviving a living hell in pain and absolute discomfort. How I miss Ibrance! I hope you can keep calm and do some research so you can help yourself with your health issues. 😊🌸
Dear Claire - Thank you for your encouragement. I am still in my nightgown and bathrobe and it is afternoon, here. I will prabably just go robed. I really am not feeling well. Tomorrow will be much better, I think.
it’s nearly 3.30am here in Western Australia and I just couldn’t stay in bed because of the pain! I have had tea, toast and Netflix so hopefully I can get some rest on the sofa! Cheers Claire
Jersey-jazz, your plate is full for sure but it's a relief your GP got you started on antibiotics . I have been on Ibrance for a bit over 3 years and have found it easy to tolerate . I was concerned before I started it in 2019 but my onc told me to try it and see how I felt on it . Keep us posted on your dermatology appt .
my goodness, that’s a lot to manage in a short time.
It’s good that you can set the cardiac issues aside for now.
And hopefully the skin condition is an easy fix. I think we assume every ailment is cancer rearing its ugly head, and understandably so. I’ve been there with a couple of issues that turned out to be nothing. I guess we just have to trust our oncologists know what they’re doing 😁
All the best with your choice of medications. I started Ibrance five months ago and all is going well so far.
Dear Kim-you are so right about thinking everything is cancer. Unfortunately, sometimes our fears are grounded. I feel as if I am looking into dark place but, then again, it's evening and I am alone. My part time boyfriend chose to walk away just when I think I could have used him for support. Again, we are our own best support system. we never let ourselves down.
oh boy jersey jazz. your plate was full already and now it is overflowing. you seem calm though...every thing you wrote is well thought out. you've got this..even if you think you don't. I am truly in awe of you💛. bad timing on the boyfriend, sorry to hear. I easily empathize with my husband divorcing me upon diagnosis. it does get lonely at times when going solo down this road. well honestly, I miss the physical support as well due to being pretty much bed bound these days. I'm thinking you have many friends/family to help support emotionally and physically in lieu of ex-boyfriend. or I certainly hope that for you.🙏. bad timing sucks! but of course you have all of us cheering you on👏🥰 as well. always! (and yes, you are right.. we don't let ourselves down...lol)
just as an fyi....it is called MRSA (methicillin resistant staph aureus), a Staph infection that is resistant to many antibiotics but thankfully not all. sounds like they are on top of this..once you advocated for yourself, of course😉.
wow. I was way too early in the thread to reply as I did above. you have had so much happen over the past couple days. so my above post is partially irrelevant, but not all of it. most of it still applies. please don't clean out the garage. I agree with Pb.. museum sounds way better💛
Thank you, dear kokopelli2017. You and others are so adorable. We are really in this together. This hot tub feels good. I am feeling wonderful at the prospect of the little cancer invaders being zapped out of my body. Meanwhile, I will read fast and continue to try to get rid my house of my old unread newspapers and other piles of detritus, just in case ----- Blastout is the 20th at Memorial Sloan Kettering, NYC.
I wish I could go back on Ibrance. It was very easy. Almost like not having cancer. I had a bit of fatigue, but not enough to do anything about it but complain
That said I think Kisquali might even be more effective (I read that somewhere). Ibrance was first to market so I sometimes wonder if the drug reps got to the doctors early and that’s why it seems to be the most prescribed (making that up but I might be right)
can you do more ablation? Get a biopsy to make sure pathology hasn’t changed? That could target things further
The skin thing doesn’t sound fair. But bad things happen in threes so that may mean you’re done with nasty surprises for a bit? 🙏
I do not know whether not I get to have the buggers ablated but I will know in about ten days when I have a televisit with the interventional radiologist. I doubt , though..
I had an infection (like it sounds you have ) a few years ago on my back and chest. It took me weeks to see the skin doc so I was quite concerned about it as it kept getting worse. I’m glad your GP got you in treatment immediately! Try not to touch it!
Why are you so concerned about Ibrance? I took it for nearly 3 years and found it quite easy to tolerate it. I’ve actually just started taking it again as part of a study (combining it with other drugs). On my 3 rd type of treatment protocol now after a number of lesions popped up in my liver during Oct ‘22 scans
The antibiotic is working, thank goodness! The GP scared me with those words, that there was a possibility of it being that bad. He is aware of my going in and out of hospitals a lot, last week and the week before. He told me to keep the appointment with the skin doctor, on Monday and to see what happened over the weekend. The swelling is lust about gone. So, that is one down in three.
Three years ago, my then oncologist offered me Ibrance along with Letrozole. I refused it because I did not want two new drugs /variables introduced at the same time. There would be no way to judge which is working or not working. Got a phone call from the Ibrance people. When asked the price of the drug per month, was told $17, 000 but that the insurance co would pay for most of it. I was horrified that they were ripping us all off, the drug companies and the patients. Now, I have enough MBC issues to deal with that I have no time to worry about the later issues of drug companies, etc.
That’s fabulous that the antibiotic is already working. Great idea to followup with the dermatologist to be sure that will be enough. I’m sure it was super scary to hear those words but at least you know you can trust your GP to be honest about real risks! 😁 I broke a bone in my foot Dec 26, and in the first appointment with podiatrist he tells me “sometimes the bone won’t heal properly and we need to put in a pin” . Ugh. I didn’t want to hear that! (Just saw him yesterday and it’s in its way properly thank goodness! ).
I hear you about the whole drug racketeering system, and yeah, never knowing if it was one or the other drug actually working. I decided I preferred that something worked fast when I started it as I could feel myself weakening. And then the drug co ‘sponsored’ the bill with my insurance so I was lucky to not have to pay anything for it. It is a moral challenge to take part in a system you despise.
It is now Monday and the bump on my face I almost gone after only three plus days. Anyway, I'm glad that I had the appointment set with the dermatologist. The inside of my chest burns with that very effective but very harsh drug. So, the dermatologist prescribed a different kindlier drug and also told me that I did not have MERSE!
Ooh the chest burning sounds unpleasant. Turns out to be a blessing you had that other appointment then, both to get better info and to change the meds! Glad you'll be all better of that very soon
Dear 13plus ---Thank your your caring words. We are all so good for each other. The oncologist got permission for free Ibrance for me and they put it on the list of meds that will go to the hospital for the surgery. I tried to correct the person on the phone but was told that the oncologist wanted it on the list because had been processed. . (?) They had better not give me some in the hospital.
I read through the thread to catch up on alll your news. Glad the Columbia report was inaccurate (re-liver Mets) but interesting you’re getting ablation. Did you find it easy last time? I have serval small lesions in my liver but UPenn seemed to think it was possibly too risky an approach for me.
Best for that ablation then, and good you got the iBrance free. If your doc thinks you need to take it go with it. I heard Verzenio has more side effects and not as effective. Perhaps don’t let your rationale and moral brain interfere with your chance to carry on living?
I know you have a problem accepting the idea of taking iBrance but it might be in your best interests to let that concern go?
Dear 13plus---You have no idea how very pleased I am that the interventional radiologist is doing the ablations. I also know that it is only temporary until the next ones appear. I'm taking Fulvestrant and know that it is losing power for me. I will probably be forced to take Ibrance to extend my life. The fact that it will be free makes possible. Meanwhile, I will continue to live my wonderful life. At the risk of sounding like Pollyanna, I feel so lucky to be here.
dear JJ- re: your skin MERSA infection- that means it is a methyl resistant staph infection and may mean going into an IV antibiotic to cure it. But time will tell.
My hubby and I were 25 and newly married when we were told about his need to have a aortic valve replacement… then began the wait game for it to get bad enough to do the operation… for us it was a 15 year wait. He had it done finally at 40 and is now over 60 yrs old. You don’t want to rush that surgery. As you can do just fine for years and years without it. I hope that helps!
Dear Bb -Thanks for the info. I remember you writing about your husband's situation with the aortic valve replacement. I was in a hurry to get it over with and to get on with my wonderful life. As noted before, surgery won't be possible until the opening gets smaller and that time is indeterminate. I'm not sure I will be able to drive off solo in my motorhome or go back to South America with my friend. Daughter has already cancelled our intended return trip to family and friends in Scotland and England. It is all alright, now. My head has screwed itself back on. Ihope you are having a wonderful time down under.
I’m sorry to hear the plans changed… hard when we look forward to these things to keep us going. Csn you take the motor home even 2 hours away for a break in spring?
Dear Bb -My plans rest entirely on the state of my mind more not my body. The way I feel today is I will go anywhere I feel like going in my motor home solely or with. So, the answer to your question is most certainly, "Yes".
Thank you, Nocillo, foryour advice.I am wary of anything that goes into my body. However, as noted above, Ibrance has been processed for me if needed. So, that's good. It really continues to bother me that the Ibrance company charges so much for their product. Also noted above, it was $17, 00 a month back in 2020. It is probably more now.
You have alot going on - l wish you the very best outcome on all fronts 🌺Here is a blurb on how lbrance and other meds like it work:What are CDK4/6 inhibitors? Cyclin-dependent kinase 4 and 6 (CDK4 and CDK6) are enzymes important in cell division. CDK4/6 inhibitors are drugs designed to interrupt the growth of cancer cells. CDK4/6 inhibitors are used in combination with hormone therapy to treat some breast cancers. CDK4/6 inhibitors are pills.
Letrozole blocks aroatase from forming which results in less estrogen in the body.
These 2 types of meds are considered standard of care and first line therapy for hormone positive her2 negative breast cancer. This kind of cancer loves estrogen. The lbrance attacks the protein on the cancer cell wall and the letrozole decreases estrogen in the body. I hope that helps.
With all their resources, and the cost of a visit - l don't understand why you weren't given more information.
Making decisions is hard, waiting is hard, know it's ok to change your mind, to ask for more information, it's ok to get another opinion And it's ok to vent.
Dear Mary---Thank you so very much for this clear and valuable information. I took Letrozole and it was like poison to me with permanent side effects and no resistance to the onset of more cancerous lesions in my liver. I also blame it with some of the damage to my heart. Although I am in my eighties, I am still very active in many ways and surmise that my body still produces hormones that protect me and allow me to be me. When I took Letrozole, I aged and I hurt. With Fulvestrant, I am back to a reasonably good energy level, considering- - - .It isn't working, though, to keep lesions from developing in my poor liver. What I am gleaning from your infos that Ibrance, along with other less expensive drugs, does not interfere with the hormones but attacks the cancer cells. Are these drugs considered targeted therapies? Finally, today, I am intending to go to the library, away from distractions, and delve into the mysteries of just what you write me about. You are giving me a head start. Great and thanks again!
Yes lbrance is a targeted therapy. A suggestion for the library is that you seek the assistance of a librarian in using a computer and searching for reliable information. Sometimes searching for patient information, prescriber information or scholarly articles can be helpful. Sometimes going to cancer centers sites can be helpful : the Cleveland Clinic, Dana Farber, Sloane Kettering, Mayo Clinic . . .
I wish you the best. If there is a specific question you would like help with - don't hesitate to ask (not an expert!) will help if l can.
Glad you are feeling better.
I am 72 years old, on Fulvestrant now and feel awful if it weren't for my family l think l would quit treatment. 🌺 Mary
Dear Mary---Thnaks for your clear advice. I too am on Fulvestrant. It has been kind to me. It reduced two cancerous lesions in my liver from 2021 to 2022. That is when the interventional radiologist decided to microwave ablate them. Are you saying that the Fulvestrant causes you pain? In what way do you feel awful? Is it the Damocles sword hanging over you?
I have arthritis thruout my bones and metastatic cancer thruout my spine, ribs, sternum, chest hips so l have a lot of bone pain the fulvestrant l think is adding to that pain plus causing muscle pain, headaches and GI problems. I have many nodules in the lungs and a pericardial effusion these are not causing problems. I am glad the med and radiologist helped your lesions. As far as knowing l will die l am as prepared spiritually and emotionally as l can be; though waiting for this cancer to progress more (it progressed in bones) is stressful.
My dear Mary--I am so sorry for your pain. It must be so awful to wake up and to go to sleep with so much pain. Through all of this, you take the time help to others like myself with so much less pain and suffering. 20 Feb is the date I go to hospital. There are six small cancerous lesions which the doctor hopes to ablate. I'm getting off so easily and you are suffering so much. I really do feel for you and feel only some of your pain. I wish a magic wand could be waved for you. God bless!
Thank you for your kind wishes, jazz. There are always others older, younger, more or less suffering with this dang cancer. There is no making sense of it or the other evils in the world.
Being here, listening, caring , accepting and validating each other is what counts and what helps.
Happy for your heart news! That's a relief. And I have to say that, for me, the Ibrance and Faslodex shots have been very tolerable. And I am very sensitive to meds. I am hoping you will find the combo successful and easy to take. I make sure to eat before taking the Ibrance. I find fatigue to be my side effect. Good luck!
Dear mariootsi----As I am no stranger to fatigue, it doesn't scare me. What does scare me is the not knowing. Marynp with her clear definitions has helped me begin to look into all that. I need to know as much as is possible for a layman to grasp before changing/adding unknown cancer drugs into my precious, beautiful eighty-five, pushing eighty -six hard body.XXX OOO
Yes, that is how I feel and so I attempt to learn as much as I can to dispell my fears of the unknown. Once the worst is known, I can look at it and try to say to myself, "If that is the worst, I can handle it.".
I hope things continue to improve. I’ve been on Ibrance and letrozole for six and a half years. As far as side effects go it’s no walk in the park but easier than most meds. Good luck on your choice. If you have regular health insurance not Medicare your specialty pharmacy should be able to help you get a coupon that brings your copay down considerably. Best, Kate
Dear Kateds--I am on Medicare as any older person would be on, in the USA. The way your note reads, I am at a disadvantage. I have an excellent Horizon Blue Cross Blue Shield of NJ, Plan J. So far, the insurance has paid all but $22 pus change. I gather that things will change radially with Ibrance, if I were to go with it. I asked the oncologist to find out the details. Since I did not hear from her, I called again and spoke to the nurse who will follow up. I really am still shocked and appalled by the $17,000 charge by Ibrance and would like one that is like but more reasonable. If we were to join together and start a union with demands, we could probably get all of them down to a reasonable level, as it is with other countries. The problem is, we just don't have the energy. More importantly, we are working hard to keep ourselves alive.
dear Jersey jazz, I don’t know about what J covers. My plan is BCBS advantage and I have a copay of $600 a month. However, my specialty pharmacist applied for a grant that has helped me some with that payment. I, too, am in the US. I pray you find a satisfactory answer. I think all of the CDK4.6 drugs are all very pricey. Good luck to you with your decision. Best, Kate
Thanks! Although people in the good old US of A are taught that universal health care is second-rate, The majority of third world countries have it and all but the USA have it in the major countries. I lived in Scotland for very many years with my Scottish husband who was sickly sometimes and the National Health Service, back then, took excellent care of him. We paid into it with our salaries. The payments were taken out of our salaries before we saw our paycheck. It all worked, back then. I gather that it has gone downhill with all the private health care now available and for other reasons. Still, everyone with diabetes and other life threatening diseases recieves their drugs no matter what their circumstances. Here, some die for want of their medicine. I will now step-down from my hobby horse.
Unfortunately for me, the triple threat has just become terribly real and I am not sure that I can shake this one off so easily. Rereading the Ct scan of the abdomen that Columbia Presbyterian took to map my abdomen in preparation for the aortic valve replacement which has been on hold, I see the word describing the largest new cancerous lesion in my liver. The word is EXOPHYTIC. It means that the mass originates in the liver but is largely outside the liver. The oncologist was in a hurry and only spoke of Ibrance with absolutely no discussion of the news of the rapidly growing lesions the liver which were not there in October. Oh dear!
I just googled exophytic and it sounds like it is a lesion that is, for lack of a better word. 3D--a lump. But I may be wrong. It didn't seem to indicate is is scarier than other types.
Bottom line is I would wait and let your oncologist explain what is going on-- and the significance, rather than hanging out with Dr. Google and too many glasses of wine.
Perhaps the fact she didn't mention it means it the type of tumor isn't that concerning. It sounds like she took on board the progression, and is keen to get you on an appropriate medication. You are being recommended a treatment that is effective for many women, and does not have side effects that are too dismal for most people. Like I said I am slightly envious it's still an option.
Breathe. Collect data from your doctor. Then focus on what you can do, rather than all the scary things that might--but aren't--happening in the moment.
Disclaimer--this post is rife with "do as I say, not as I do." I am the queen of too much google and boundless catastrophizing!
Dear Pb----- Thank you for taking the time away from your wonderful trip to look up the word EXOPHYTIC. Where it is in the report from Columbia Presbyterian is in describing the largest new lesion (5.3cm) since October, when it was all clear, is that the lesion is largely outside the liver but begins in the liver. My concern is if the cancerous thing is not in the liver, what other part of my body is now invaded by cancer. How does this interfere with my plans to live for a few more years? Further, I'm not at all sure that my doctor actually read the report from Columbia that I had sent over to Memorial Sloan Kettering where my oncologist is. She only talked to me about adding Ibrance on to my therapy. She spent between five and ten minutes with me. When asked for more information, she looked at me blankly. I suggested a print out for Ibrance and some other drug like Ibrance. The print outs say nothing we don't all know. I really do not think she is aware of the situation.
This morning, I am making plans as to who gets which cookbooks of mine. XXX
It is indeed scary. I don’t feel like my doctor stays up on all the details and worry constantly that things are being missed.
That said while it could be the beginning of the end and time to sort the cookbooks, it might not be and perhaps you don’t have enough data yet to make that assumption. It might be she didn’t read the report properly, but maybe she did and knew it wasn’t too dire and that is where the Ibrance idea came from You might have cancer elsewhere but it might be just in the liver. And does it matter if you’re going on a systemic treatment? Maybe there is a radiological response?
Do you have a good relationship with her? How has she responded before when things shifted in treatment?
I think it’s inhumane how doctors make us wait for critical details and to make a plan. (Everything is better with a plan) I guess they see situations like ours all the time so forget the patients’ perspective—and how stressful uncertainty is. For us it’s our first and only time to do this MBC thing
When will you speak with her for more than 10 minutes about next steps? She should be making that a priority, especially given the trifecta of gloom you are facing.
In the meantime I hope you can find some respite from anxiety. Easier said than done of course when the stakes feel so high.
That's funny -- I went to MSK to get the info that my Columbia Pres. oncologist wasn't giving me. Too bad you got short shrift from your oncologist. What I learned at MSK (where I went for 2nd opinion after Ibrance-fulvestrant failed) is that the CDKs go from 1-12, and that the only inhibitors they have found work on 4 and 6. The inhibitors for the other CDKs proved too toxic. MSK has a trial now for a CDK2 inhibitor. (Okay, the MSK doc's explanation wasn't that clear, and she looked disgusted as I pressed for more answers.)
I also found letrozole intolerable but found fulvestrant and Ibrance quite tolerable. The other good thing about Ibrance is that you can reduce the dose twice to find a tolerable level for you. I had no trouble with the max, 150.
Also, I got Ibrance free through the patient assistance program. One of the nurse practitioners working in breast oncology helped me get into the program. (I am on Medicare with AARP supplemental - that didn't help, but having income below $70,000 or something did.)
Too bad the boyfriend skipped at just this time! It is not an uncommon experience here, to use a double negative.
Thanks for all this. Will ask the oncologist for a verbal comparison of Ibrance and Verzenio and ask her for a cost comparison as well. I certainly have an income below $70, 000. I am not at all clear about any of the CDK inhibitors. When you wrote about it all, in this stream, I thought I understood it perfectly. Now, no. I too had a very bad experience with Letroole and like Fulvestrant. I presume it has failed me swell. The doctor is going to call me back this afternoon. So, I am now armed with some questions about CDK inhibitors. I will try to squeeze a request for her to explain it all to me. I will also ask her if the DNA tests (2) direct her to any specific targetted therapy. Otherwise, what is the point of taking them? The longer she takes, the more worried I am about the gravity of the situation. I was intending to go to the Metropolitan Museum, tomorrow. I think that I will be nursing my wounds, instead.
Oh and ask about Kisquali too. It seems to be very effective per recent data. Although Verzenio works slightly differently than Ibrance and Kisquali. I believe it causes diarrhea though which is not fun. Bottom line is there are pros and cons to each and your doctor should talk you through them all.
Darn! I got off the phone with the oncologist about the time you reminded me of Kisquali. Will be speaking to her again, before a discision(sp?) is made. I just love the way we all educate each other. This brilliant forum has smartened me up so that I can speak as if I know what I am talking about and I can stand up for myself.
When Ibrance + Fulvestrant failed, the Columbia doc put me on - no, well, this doesn't count, an oral SERD in a trial, but when that failed, Columbia onc put me on letrozole and Verzenio. The MSK oncologist said she would have put me on exemestane and Kisqali at that point because of fewer side effects. She said it didn't really matter; you go through all three CDK4/6 inhibitors eventually, and through the various aromatase inhibitors anyway. It is good that when one fails, the others seem to work.
I found Ibrance much easier than Verzenio. I am getting Verzenio free from Lily Cares. That system works well. I had a simple application form that I downloaded from Lily Cares, filled out my part, took it to Columbia and oncology filled out their part, and sent it in. I was approved and a specialty pharmacy in Queens sends it by FedEx. It was similar with Pfizer Patient Assistance Program. Just do that for either one. I have no idea what they really cost, just that I couldn't afford them on my own. The only downside of the free program is that Medicare Rx counts the cost as whatever it would be, not the $0 that I pay, so I wound up in the donut hole.
I couldn't tolerate letrozole, so Columbia onc. put me on anastrozole. It is pretty bad, too, but not as bad. I miss fulvestrant and miss the oral SERD even more.
I had a DNA test (liquid biopsy) and got the results back. The report said that whatever mutation I had did not help with treatment. That is, there is no known medication that works better on that mutation. That must be the same for you or they would be using it to steer the course.
It could be that one of the CDK4/6 inhibitors is better than another for liver mets..(googling)..I couldn't find anything on that, but got freaked by other technical things I read, the three types of BCLM (breast cancer liver mets -- different ways they breach the liver). A clinical trial of a new approach at MSK came up. I think this is a time to talk to doc and don't read, but DO look into free Ibrance (Pfizer) and Verzenio (Lily).
It never hurts to clean out the garage! What a sense of accomplishment it gives. You must be feeling pretty well to do that, so this cannot be that bad.
Dear Pb and TC ---the worst so far is that the oncologist had never even looked at the CT scans from Columbia and had no idea what I was talking about this morning, when I called her and left a message saying that it was urgent. They at MSK are still working on it and will be calling me within the next three hours. It sounds serious. I started to clean out my garage.
F*** the Garage, Go to the Met! Or Frick Madison if that is more manageable (I have not been since the Met Breuer days, but it is supposed to be wonderful). The Met has an exhibition of black potters from S. Carolina that is supposed to be very good and it closes this week. The Guggenheim is showing Alex Katz, which is fun and has been well reviewed.
Take your mind off of things and look at beauty. I doubt your garage is beautiful--no offense. (We are museum people...so a museum is always the answer to a crisis)
Please let us know how the call goes. And SHOCKING she had not looked at the new scans. That would make me very cross indeed. Well done you for insisting. But you shouldn't have had to insist.
I am so proud of myself for asking the oncologist about the exophytic lesion which she hadn't seen. In fact, she had not even looked at the CT scans from Columbia. Why am I not surprised?. She finally called me back after she had consulted with a radiologist . Further, the beautiful and knowledgeable Interventional Radiologist who has done all four of the ablations has been notified and has requested the discs from Columbia and will speak to me on Thursday via televisit. The possibly very good news is that the Columbia scans are interpreted wrongly. The picture of the exophytic cancer may be just an overlay of the biggest and first microwave ablation done on 2/!7/21. I am hoping.
Thank you, fellow museum geek. I saw the exhibit of the black potters of S Carolina, a few months ago. I love the met museum. When I go in to the main hall and look around me, I get chills and thrills with all the magnificent beauteous art work completely surrounding me. I've had a membership since 2009 when I returned to this country. It encourages me to go there and enjoy myself. In a few months, depending on the state of play with my health, I will rejoin the South West Pennsylvania Conservancy and take my motorhome to Frank Lloyd Wright's Falling Water and camp in the Ohiopyle State Park which I highly recommend. When I join, I get a free pass to the Guggenheim. Yea!
Yes! Yes! Yes! Columbia doctors, certainly more interested in the aortic valve than cancer, misread the scans as regards the liver business. I saw the Interventional radiologist via Telehealth. She has followed the oncologist's request and on 20 February, will be removing FIVE very little cancerous lesions that are on the seams (?) of the edges of past ablations. This will be instead, I fervently hope, of Ibrance and the like. There is much more but this is enough to keep happy. A very, huge thank you to all of you who have taken the time to hold my hand through this perfect storm in my life. DOWN WITH CANCER! XXX OOO
yay to all! Funny how doctors are in their solos. I had several doctors at MSK scratch their heads when I had garden variety shingles!
So pleased you’re feeling more hopeful. And interesting about how they are removing the lesions. I am hoping to do the same but my doctor is procrastinating.
Don’t be afraid of Ibrance. Truly. It’s been a game changer for so many.
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this year I will be 59 
MBC Lesions in my spine
Xeloda
Questions about Ibrance and Ibrance co-pay card and annual deductible 
Reliability of PET Scan/cancer antigen tests?
