Ibrance (Palbociclib)
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ladies thanks a lot, your response made me brave enough to call the clinic and rescheduled my lab appointment.
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I have been on Ibrance and Letrozole almost two years. Since the beginning of April I have been feeling pretty awful. I ended up in the emergency room on April 10th, and there, once again, no answer for my issues. I'm used to never having an answer. Anyway, one of my issues is better, the horrid flank pain I was having. My other issue is not. I've been having just the weirdest feeling in my head and eyes. I am scheduled for a brain scan next week. I have absolutely no energy. I keep making myself walk my mile and do some dishes, but I'm really struggling. As a reminder, I have stomach mets. I'm back to not being able to eat a lot and feeling very nauseous after I eat. Had endoscopy last Friday and awaiting results. I don't think that will give me the answer for no energy and barely being able to function.
Has anybody had that happen and switched meds and felt better? I'm trying to figure out the problem.
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hello all, I have a question about ibrance & appetite loss. I've gotten that "everything tastes weird" thing going on, even water tastes bad. Does this go away in time ? It's very reminiscent of doing chemo first time around.
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KBL, I really hope this discomfort you described is none cancer related, and your care team is able to figure out something soon.
Candy how are you? Please check in when you can.
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KBL: since as you know I'm a relative newbie I can't comment on your recent symptoms from experience, except to say I'm sorry you are still suffering from them and do hope you get answers on this too.
Thanks belatedly to everyone who answered my fatigue question....really helpful. I'll be hoping to see some improvement in the next months and try to extend or multiply my walks. Beautiful spring blooms have certainly made them more inviting.....
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Thank you, Snow-drop. Had brain MRI today. Brain is fine, but it's in my skull. The radiologist didn't seem surprised and isn't sure the symptoms I'm having are related.
I am at a crossroads here. I've been on Ibrance and Letrozole for almost two years. June would be two years. Because I don't know if my cancer is progressing, I've talked with my husband about switching to Xeloda. I'm scared to switch for fear Ibrance is working, but how can it be working if the cancer is still in every place it has been for the whole two years? They didn't do the proper MRI scans before I started, so when the MRI report last August said significant progression from the 2015 MRI, I have no idea if it's progressed on Ibrance or not. I'm wondering if somehow the medication is what's causing my issues with my head and eyes.
Has anyone not had definitive progression but switched medication? I do not want to make a mistake and switch. I'm so nervous. I see people post that they have scans and their cancer is retreating or lesions are getting smaller. I don't have that luxury of knowing any of that. I'm covered in mets from head to toe and stomach, and now including my skull. I also don't want to stay on Ibrance if it's not doing its job.
Any advice is appreciatated. What would you do?
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Snow-drop-- Thanks for asking about me. Here is cross post I just posted on the liver met Thread------
Well, my liver biopsy yesterday was more of an adventure than I wanted. My church friend went with me, and the drive was ok. But.... they had complications getting the sample. It was ultrasound directed, so the IR had the US machine there and was taking pics and then directing the needle to the site--- a 2cm tumor. As you probably know, when we breathe the liver moves along with the diaphragm. So he would say "take a deep breathe and hold it". Then he would aim for the tumor. I guess that caused some trouble, trying to hit a moving target if I didn't hold my breath well enough. Finally he got it snagged and took a sample. But then he said it was not enough of a sample. My tumor is "fibrous" he said, so hard to get a good amount to test. So he tried again. And again. And again. From various angles. And with a larger bore needle. 3 HOURS LATER and 3 puncture wounds to my belly he got some to test. But we do not know if enough for Tempus testing. To be fair to him, he offered many times to call it quits. He said we could try again another day. I said to keep going. Finally, on the last attempt I had some bleeding and he had to hold pressure for 5 minutes. We called it quits after that. I had a local numbing meds- Lidocaine-- multiple injections of it. But no Fentanyl or Versed. Very sore today. Just got a call from the IR asking how I was doing today.
"Fibrous"?? I wondered about Lobular. Would that make it fibrous? Also, the nurse mentioned maybe necrotic in the center of the tumor. I was thinking that necrosis in the center was indicative of aggressiveness-- that the cells are duplicating at a fast rate and the center cells die off fast.
What do you all think? I am, of course, going to ask my MO. But, we may not have gotten enough of a sample for Tempus. Sigh.....
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prairiesea, sorry, I was posting at the same time you posted. Thank you.
Candy, ouch. I'm sorry it was a tough day, and I hope your pain doesn't last too long. I'm hoping you get the results you need to know what's going on.
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Amanda6 - I’ve been on Ibrance since late February. I have noticed that things taste different, but not bad enough to not eat. My first bout with chemo, all sweet things tasted completely flat. I haven’t had that this time.
Candy - glad your procedure is over with. You are braver than me. I would have told the IR enough! after the first try, maybe second. I’m super squeamish. Take care!
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KBL, I am sorry about the whole things you are dealing with, and great news on clear brain MRI. Ref to your question, my former MO wouldn’t change treatment if bone met progression is less than 1cm, he would rather wait and watch for another examination, also he would change hormonal therapy than targeted therapy, ie would keep ibrance and change letrozole for a while. My MRI after 8 months of prognosis showed many new Mets in my spine, he believed they were there but maybe radiologist didn’t see, and now radiologist was able to catch them as they got bigger. Since your Mets are ilc and small by its nature, I personally wait for fes pet, see what this new test will show then decide whether to switch. You and your MO may not know when this progression happened before or with ibrance. All the very best wishes for you. (((Hugs)))
Candy, that is long tough procedure, I hope you feel better now. Let’s have hope that those samples are enough. (((Hugs)))
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Just a brief check in. Not feeling so hot, one of those sour low patches for me currently. I hurt a lot and it has me down. I cried staring at my overgrown lawn, both because its overgrown and because i don't have the strength/energy currently to mow it. And lawn mowing is my happy place. My crack. I've been able to mow with Stage IV the past 2 summers, but this summer is different. Beloved mentioned a self propelled instead of my push mower and that he'd help me do some, find a way to help me still mow. Just sucks to feel ancient without a wrinkle or a single grey hair. *end pouting rant*
Edited to add: I've tried everything outside of narcotics and morphine for pain including MM, tramadol, and gabapentin, ointments, creams, hot showers, heating pads, stretching. Nothing touches it.
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Awwwww Rabbit I’m sorry. How about a riding mower? You could still be outside, smelling that special cut grass smell. I think I’m part cow, freshly cut grass smell makes me hungry.
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Rabbit - I've asked about pain and why is it so hard to treat. Western medine seems to dose the entire body, and it may or may not help. Asking an acupuncturist. She has made no promises, but is trying different techniques. I remember back to to early 1970's when a family friend who was a DR talked about his trip to China. He must have gone right after Nixon. He described witnessing surgery where in the US the patient would be fully sedated, but the surgeries he saw used acupuncture, patients were alert and reading. Sometimes when the pain is only in one area, ice helps, but not always, or alternating ice/heat. I usually get the pain in the right forearm, same arm with lymphedema.
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Candy, I still keep an eye out for your posts. It hurts me that your biopsy was so awful. I hope that after all of that they got a useable sample. I do understand your reasoning. Thinking, I'm here, you are all here and it's all set up, lets keep trying. You are very brave.
I'll be watching for your results and pray that they were/are the ones you hoped for
HUgs
Sue
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Rabbit, I'm so sorry you're in pain and that everything you've tried so far hasn't helped. And not being able to mow, that sucks! I love tidying up my little yard, it helps my mood a lot. Wishing you relief from pain and a new fancy mower.
Candy, wow, what a biopsy experience you had, I really, really hope the sample they were able to get is enough for testing. Hope you are feeling better. Three hours, damn.
KBL, glad your brain MRI was clear, and I hear you about the concern whether to switch meds or not. It feels so scary to change treatments, I also have ILC, which is sneaky and hydra-headed. How can we make these massive decisions? I have no answers, but am thinking of you.
RosieRed, I hope the fatigue starts getting less for you, it sounds like quite a few folks here said it got better after the first few cycles.
Jackie, hope your headaches are better, hoping it's maybe a vaccine reaction that will pass soon for you.
Lots of love to everyone, grateful for you all.
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Thank you, SF-cakes. I really appreciate it. I have never had radiation, but I’m going to talk to doc about it Monday to see if I can possibly get help with some pretty awful headaches and wonky feeling. I don’t know where it’s coming from, my cervical spine, my sinuses, which are supposedly a mess on MRIs, but I have no symptoms. All the decisions that have to be made are mind blowing.
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Thanks So much SF-Cakes. The headaches seem slightly better with help from my daughter massaging my neck and scalp and Advil. I'm cross-posting the following paragraph from one of the Covid vaccine threads:
Still getting headaches. It's now been 18 days with daily headaches. It feels exactly like occipital neuralgia. As I said previously, I have had these type of headaches on occasion for years, would usually last a day or two and that was it. Since the second Covid vaccine I have had them daily and at times excruciating. So MRI on Wednesday, here I come.
As far as my new treatment is concerned, none of the biopsies had enough content to find anything substantial. So on Monday I am getting a liquid biopsy after all. Hopefully I can get on new treatment soon since I haven't been on anything with the exception of Xgeva since April 5th.
My heart goes out to all of you having issues with pain, etc right now. This is a horrible disease that no one deserves. I know many of you must feel like me and just want to feel normal again for just a little while.
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I am moving better. Thurs and Friday was very sore. Now, just sore when cough or move a certain way. Have not heard yet if they had enough specimen to send off to Tempus. But, will just have to make due if not enough. Not going back in anytime soon for another biopsy !!!!
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Hi all,
Catching up...lots of prayers, good energy and positive thoughts to all of you on here.
Candy, that biopsy sounds awful. You are smart and tenacious and I applaud you for hanging in there in hopes they got a decent sample. People just have no idea what we go through. I am really praying that you get some info from this.
RRabbit, I am so sad that you are in such pain. Once again, "regular" people have no idea what we are expected to endure. It is not ok that pain meds aren't helping and I guess the oncology team expects you to just get by.....I was at my cancer center today and met a kind, older (75 years old) man that was in the cafe having coffee while I had breakfast (I have an hour to wait between blood draw and onc appt). His wife is stage IV pancreatic and she was there today for acupuncture for pain. She just started so he doesn't know if it is helping yet but it was a good suggestion from Blue Girl/Red State. Please keep us posted. You will be in my prayers. I think a power asst mower could be a nice solution for the yard work.
KBL - Thinking of you often and sending you prayers for some answers. Thankful your brain MRI was clear but you deserve to get some answers and solutions to the pain and symptoms you have going on.
Jack5ie - you are also in my prayers. Today you are having a blood test for a liquid biopsy and I am hoping you get some answers and some pain relief.
SFCakes - sounds like you are holding steady on the lower dose and not having the fever which is great news.
Amanda and PrarieSea, RosieRed, I hope the fatigue gets better for you, or at least is tolerable. I am pretty sure I mentioned this, but on the lower dose I don't have that fatigue I had in the beginning.
This morning was my monthly onc appt/blood draw and fulvestrant. Neutrophils at .86 so I am ok to start my next cycle of Ibrance. I mentioned earlier the nice 75 year old man I met in the cancer center cafe. He told me a lot about his wife and he just seemed like such a caring partner. He assumed I worked at the cancer center and was taken aback when I mentioned I am a patient (I did not mention that I am stage IV). He said, "that is such a surprise, you are the picture of health!"... I suppose looks deceive;) Hope I haven't left anyone out that is having additional challenges. Thankful we have this place to share with people who truly understand what we are experiencing.
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Aprilgirl1, thank you so much. I appreciate your thinking of me. I’m glad you get to start your meds.
I had a telehealth appointment today, and I was telling my doc that every joint hurt at this point. She has decided to test me for rheumatoid arthritis with my bloodwork coming up on Monday. My mom had rheumatoid, so it wouldn’t shock me. I already have one autoimmune disease with hypothyroidism. What’s one more? Actually, I would take it if it would give me an answer to the pain and it wasn’t cancer related.
I am keeping my fingers crossed with getting into a clinical trial for the FES PET scan. I do want it to work and see my cancer. I will have to fly to Utah, and I hate flying, but I will do it to see what happens. Wish me luck on getting in.
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KBL - I understand how you feel and if it is RA, that would at least give you an explanation for the pain and something to work on. I hope you get into the FES PET trial and am sending you tons of positive energy and prayers that you are accepted. I am so impressed with your perseverance and appreciate how hard you have had to push to get answers.
Edited to add: I know it's exhausting to be the one who has to constantly question, investigate and push for answers. I have had to do this years ago with my son who has autism (high functioning, but still hard). I also had to push a lot to get the testing that led to my stage IV dx as I was brushed off by ALL doctors, including Seattle Cancer Care. There is a feeling of defeat I experienced with both that then morphs in to strength. It's really hard to keep up the energy, especially when you feel like crap. Know that we SEE how hard you are working and all send you strength.
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You know what the absolute crappiest thing about IV is that its always something. My beloved and I managed a joint mowing session. He watched me, helped push behind me and took over on hills, had to step in and tell me to take it easy, got so in my element i forgot to take it easy and pushed too hard, paying for it today. It just felt so darn good to see that trimmed grass, feel the breeze, smell the cut grass, look at finished product, listen to the hum of the motor. A riding mower sounds like a blast but this electric mower that we have that runs on batteries is only 2 years old, so i personally cannot justify retiring it so quickly, even if it might make things easier due to cost of purchase and getting our monies worth kinda thing. My initial cancer diagnosis, treatments and colossal life events following in succession has driven us to financially pretty dicey waters. Cancer seems to do that. Guilt overload if I buy a on sale spring/summer dress or even simply underwear. I'm concerned about what future care I'll need when things take their turn so i'm trying not to leave too much more of a gigantic cluster for my beloved to deal with in the future. My beloved says, "Yeah, that's my stubbie for ya". So stubborn i am apparently sometimes it merits its own nickname!
I got a call the other day from my specialty pharmacy informing me my Dr's office hasn't returned multiple phone calls from them to speak with my doctor to go ahead and authorize my Ibrance refills request since i currently have 0 refills and I'm a few days in to my 18th cycle. I informed my MO middle of last month when i was mid cycle 17 that I was out of refills and would by out soon as i had one cycle waiting and no refills. I don't like to be in that place of having no refills so i try to let MO know with time to spare to load me back up. First time in 18 cycles I've had trouble getting refills put back. Mind went all over the place..."Oh no, maybe she isn't authorizing because she sees something in my blood and is waiting til 12th to tell me to pack up my dancing shoes". Call into my MO office yesterday by me, left message, followed up with message to portal today. Will follow up back and forth between phone and portal til I hear whats going on. I can get my Ibrance quickly, within 2 days of ordering it, but i need authorized refills dang it.
Aprilgirl/Blue, looks are so deceiving aren't they? Yeah MO doesn't want to prescribe narcotics or opioids, she referred me to a palliative nurse pretty early on for pain management who was the one who hooked me up with MM and then we tried Tramadol after my MO and I tried Gabapentin. Palliative care nurse made me feel worse emotionally every time i saw her, my initial introduction to her while she was filling our MM paperwork was to ask me if I had a DNR in place...this was a few months after my MBC diagnosis. I gasped and she said, she was sorry, it was for just in case something should happen and i wound up in the hospital. I thought palliative was kinda supposed to be the comfort and emotional side of a serious cancer diagnosis that MO's tiptoe around. For sanity I stopped seeing her when things we tried for pain failed. Unfortunately my center seems very treatment focused instead of whole patient focused and nobody else around outside the city takes my insurance. Truthfully, scared to dabble in the opioid/narcotics...have been kinda muddling through and saving them for later, when im ready to stop treatment. And believe it or not I'm afraid of needles. What an oxymoron. IV cancer patient, afraid of needles. HA! Yeah, its true, its better than it was before cancer for sure but big needles, oh boy, pass me the Ativan! I like when conversations with cancer patients or their caretakers happen. Met an older couple during AC chemo in the chair next to me, she had blood cancer. Lovely couple, so friendly and talkative. Really curious about me since i was youngest in there. They made a weekly date out of her doctor appointments, she got her infusion, they went out to dinner or a night on the town afterwards then they'd zonk out together cuddled by the tv in the evening they said. Then there was that time I met another older woman in the infusion room. She was 80's+ and was watching a Beastie Boys music video on the TV in front of her chair and in her lap was a bag of snicker's mini candies. Cracked me up.
Jackie, pocket duty for your brain MRI tomorrow and hopes they get a good liquid sample for you so they can start you on your next line soon. Thinking of you and hoping your headaches are getting better, they sound awful.
Candy, you did great with your liver biopsy! You had the attitude I'd have, I'm here, let's go, get what you want, I'm not doing this crap again, but ouch to the multiple pokes from every which way, incredible patience on your part lady, I hope they got enough after that ordeal, my goodness!!
KBL- it must be so frustrating to have cancer that doesn't show up in traditional imaging creating an even bigger guessing game. I wish i had words of wisdom or comfort. I second Aprilgirl, we do see how hard your working and advocating for yourself. We are behind you.
Newbies, how goes it with the Ibrance, Cakes, still doing good?
Anybody with spinal met get spasms in their back? I get them a lot, out of nowhere, takes the wind outta you sometimes if you move wrong. Sounds like I'm permanently sucking in too hard when one hits, kinda like one does when you see a McDonald's shake finally start making its way up the straw and you get all excited.
Take care ladies
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April, what a great post. I'm still waiting for the "morphing" to get me out of this funk but your post helped me peak around the corner.
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Rabbit when DH was admitted to hospice, silly me thought that was palliative care. To keep him comfortable. She did ask if he had/wanted a DNR. I thought we already had, in our wills. Nope, this was a special yellow paper, that was to be hung on the side of fridge.
Things happened fast after that, bed, O2, and meds, other supplies delivered. Meds were freely supplied, and used. Morphine.
So it did keep him comfortable. He had bone Mets ALL over. Hard to say if the spine lesions or the leg leisions hampered his getting around.
He was on a lot of oxy towards the end it didn’t help anymore. They have a whole pharmacy, could you give it another try?
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Thank you so much Aprilgirl1. I had some energy today, so I used it wisely and cleaned the whole house. I'm sure I will pay for it tomorrow, but it sure did feel good. I will keep you posted about PET scan. I didn't hear anything today. We do have to be our own advocate, especially for our children. I'm sorry you had struggles with your care as well.
Rabbit, so glad you got to mow the lawn. It's the little things that we can do that make us happy. Thank you so much for your support. I really appreciate it.
I had an issue getting my Ibrance once. It was because there was a go between, which was Evicore. Man, I really don’t like them. I got on the phone with a manager. Shesaid she understood that I was upset. I literally screamed at her and asked her if she had cancer. There was complete silence. I try hard not to be rude, but don’t tell me you understand unless you’ve been in my shoes.
I was having spasm in my back a few weeks back. I did go in a muscle relaxer for a few days, but I'm one who doesn't like to take medication, so I stopped. I'm not having spasms now, just the pain everywhere.
Cute stories about the couple and the older lady. Lo
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Candy, thinking of you, I hope you are doing well. have you heard back from your MO about biopsy results? Wish you best of luck.
April, your posts are full of energy, thanks for sharing
Jaycee, wish you a speedy recovery
Rabbit, I can relate you about our daily activities, sometimes doing some of routine seem difficult
KBL, please do follow up on the trial, keep pushing until they let you in.
I had a nice (!) chat with a new RO! For the first time in long time-since I diagnosed- I did not afraid of defending my opinion and disagree with treatments. Told him find some plans for the Mets which extended to my cord, the one that fractured when untreated lesion grew, and that I am not interested in waiting to see what happens, in fact I am here to reduce obvious risks... funny when he saw my notebook, I recorded everything including size of tumors in my spine with date of mri and name of radiologists. When he came in he had a small post-it in his hand, with my name and vertebrae numbers on it, apparently those are related to Mets in my bones. That’s all he reviewed my case!! He said your spine is a mess too many disease in it, and he said compression fracture might happen to a normal person in everyday life!!!! What a Hilarious insight from a specialist!!! .... so now he is going to talk to neuro surgeon and MO in next few weeks. I hope they come up with a good plan.
Hello to all 👋
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Still hanging around this thread because I still don't have a new treatment plan yet, but hopefully I will in a couple of weeks. Just wanted to share the good news on my MRI. All clear!!! I was so worried because I was having excruciating headaches almost constantly since 4/14. Yesterday, the day I went for the MRI is actually when I started feeling a little relief and today has been better too. My doctor just called me a few minutes ago. They didn't find any reason for the headaches either so I can only assume it was from the Covid vaccine. Anyway, after a few minutes of happy tears, contacting my family and then composing myself I decided to let you guys know. Thanks for all your good thoughts and I'll keep you updated on what comes next for me regarding treatment. Hugs to all!
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Jack5ie what a relief that nothing sinister was found on the scans and that you are feeling better. Always good to hear something positive
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Jack5ie - that is fantastic news! Please keep us posted and you are welcome on this thread regardless or treatment!
Snow-drop - great to hear how well you advocated for yourself! Knowledge is power!
Candy - worried about you, hope you are ok.
Hollyli1202 - haven't heard from you, either. Hope you are doing ok.
Any Ibrancers that have had dose reductions, have you noticed new hair growth? in April of 2020 I was dose reduced to 100 mg, December 2021 dose reduced to 75mg Ibrance. I have 3.5-4 inch baby hairs spiking up all over. My hair stylist noticed it a couple of months ago but now that is is close to 4 inches, I notice it when I dry my hair. I will ask my oncologist about it but was wondering if any of you have had this happen. I probably lost 30% of my hair within the first 6 months of starting Ibrance/fulvestrant.
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JACK5IE,
I'm so glad about your MRI! I remember how frightened I was during the time I waited to learn I didn't have brain mets. Mine turned out to be mets to the skull that had progressed. Fortunately, after 3 CyberKnife treatments the lesion was gone and hasn't returned. I switched to Lynparza and didn't tolerate it well so I returned to Ibrance and it has worked pretty well since. Maybe you also will be able to get back into this dance!
(I might add that the side effects I attributed to Lynparza may have been due to Covid 19. I could be willing to try it again if they combine it with an immunotherapy in the future.
I'm wishing all of you well and hope Springtime is happening beautifully wherever you are!
Love from PatGMc
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