Piqray users, what is your experience?
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Hi Pajim, Thank you for responding She has told the doctor about her issues, but she doesn't emphasize how bad it really is. Part of her is afraid they may completely take her off Piqray, She was previously on Kisquali and Tamoxifen which she tolerated fairly well but stopped working after about 11 months. I'm sorry I forgot to mention that her doctor did reduce the amount already. That helped a little with her bloating and she was able to reduce Metformin intake. I believe they can go down one more dosage of Piqray, do you or anyone know if someone goes down to such a low dose, if it will work as well?
I will tell her to try Zyrtec instead of Claritin and maybe a change will help.
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Hello Jobur, I had Faslodex injections with the Ibrance. This week I had some blood labs done and they told me my blood sugar level was 236. So they have taken me off the piqray and gave me Metformin for the high blood sugar level. I’ll go back on the Piqray in a week or two. I thought I would probably get some SE’s from the Piqray, but not so quickly! So now I’ve been reading up on high blood sugar, to get a better understanding of what it means.
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Hello Piqray pals, lurkers and posters, past and future!
This thread has gone quiet again. I always hope that means everyone is doing well and living their lives.
Hello jben, welcome to this thread and the stage IV forum. There is wonderful support here and tons of good information you might not hear from any doctor. I am so sorry your daughter has been hit by this crappy disease. Of all the bad and sad circumstances I read here I hate hearing of young people (and especially young moms) being dx'd with MBC the very most. It sounds like your daughter is suffering terribly from se's with this treatment. I hope the April scan will reveal that suffering has been worthwhile in terms of her response to Piqray. I have a couple of ideas she may want to pass by her mo. I had a lot of leg pain after starting a statin while on A/A last year. I found taking COQ-10 (an OTC supplement) made the leg pain disappear. Regarding fatigue, encourage her to try to push through this is much as possible and do whatever exercise, housework, or short activities she can manage. Take baby steps, but do push yourself to take those steps. I would also encourage her mo to take a close look at her hemoglobin. Mine fell to 10 when I started Ibrance back in 2015. My mo checked my iron levels (sorry, I can't look back far enough to see exactly what was checked, there are a couple of different labs specific to iron) and put me on a short course of iron supplements which got my hemoglobin back to normal and gave me back some energy. Lastly, does she take any kind of pain meds? This is a matter of personal choice and I know some people try to steer clear of any narcotics, but my little 5mg oxycodone tabs have helped me through some pain and rough spots. I do not take them unless I really feel the need for pain relief and I have been taking the same dose off and on for all of my 5+ years living with MBC without becoming dependent on them. (And I have a fairly addictive personality!) I hope one or more of these suggestions will be helpful to your daughter. Wishing both of you better days.
wmucluck, Welcome to the Piqray thread. May this drug be kind to you in terms of se's and give you great results. I was on Faslodex (most of that time with Ibrance) for 3+ years. Fas alone got me quickly to NEAD and kept me there until late 2018. Never thought I would be going back to it, but here I am, getting the mother of all shots every 4 weeks once again. I am on the small side (5' 1'', normally around 125 lbs.) but have (with a few exceptions) not had problems with the injections. I did switch from getting them in the tushie to the ventroglteal site (hip area) and find it less painful and safer in terms of not accidently hitting a nerve. BUT (big but!) you must have a nurse familiar and comfortable with giving the shots in this area. I am SO fortunate to have the same wonderful nurse give me my shots every time, but know not everyone has this luxury. A bit of upside, I do NOT get those awful, lose your mind for a couple minutes, hot flashes that Fas gave me on my 1st go round. Still get a few flashes now and then, but very mild.
Ann273, So happy to hear you are still feeling well in your early days of this tx. I don't have your knowledge on mutations and what does/doesn't work best with them, but Faslodex has been my easiest and most effective tx to date. Is this your first time on Fas? I hope it will meet, and yes!, even surpass your cautious optimism. Thanks you so much for posting. It is good for newbies to see that not all of us have awful se's on this relatively new drug.
Hi Pots! Always good to hear from you! Did you get your CT results back yet? Fingers crossed for stable or better! I am SO jealous of your cherry blossoms! We have been having wonderful, spring like weather here, but all of us old timers know very well that old man winter will make a comeback at some point. In answer to your question about being more emotional/moody and less executive function, I have to say I don't think I have experienced that. Right now it's hard to say though as I have most definitely experienced all of that due to a lack of nutrients because of current GI problems. Hmm, wonder if 1 of your damned horsemen (thinking big D here) might be to blame for your mental symptoms too.
Brenniejoyce, Sorry about the high blood sugar, hope you can get it under control and restart Piqray soon. Good for you for doing some research on what high blood sugar is and be sure to read Cure-ious's post on the previous page. Knowledge is power!
Short update on me. I have now had both CT and EGD and no trouble found although lipase is still at 225 (60 being normal high). Ultrasound (which the GI guy told me is the only way to see gallbladder stones) tomorrow. I was quite shocked at how my ability to think declined after 6 days of clear liquid diet! Brain is working noticeably better after going to the full liquid diet. Trying to slowly add more foods now, but a little clueless as to what, how much, and how soon. But I am back to living my life (though at the speed of sloth, ha ha!) and looking forward to getting back to "normal". Also hoping to restart Piqray soon, probably at a lower dose. It will soon be a month I have had only Fas and it's making me a little nervous.
As always, apologies for the lengthy post and best wishes to all.
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Hello ladies,
I've been dealing with my dear sweet brother's near fatal surfing accident so haven't checked in. Brother is doing well and should make a full recovery.
Pots: I have noticed a decline in memory and executive function but I noticed it even before Piqray. No fun!
Ann: I'm happy to hear you re doing well with this treatment. May that continue for a long time!
jben: I'm sorry to hear of your daughter's struggles with this. Pajim had a good suggestion regarding discussing a dose reduction with her doctor.
jobur: I'm thinking of you and hoping you have gotten some relief and some answers as to what's causing the problems. It's so compassionate of you to help so many of us here and I hope you extend that same love and compassion to yourself. My sense is you do.
wmukluk: I was on Faslodex alone with good results for quite a stretch. Can't recall how long but not 5 years! Impressive! I hope the combo works well for you.
As for me, I'm working with my pcp/internist and the endocrinologist to get my blood sugars stable. My AIC was normal and then jumped up quicky. So now I'm in full diabetic mode. Diet, insulin, trying to get exercise in. With insulin adjustment and dietary changes we are seeing improvement. I want to be able to stay on Piqray. I have an MRI tomorrow and we'll do tumor markers which have been coming down. My CA15 was in the 4,000's last spring - yes you read that correctly. They went down some on Erubilin until it stopped working and down more on Pigray. Last check was in the 2,000. I've never been one to have "scanxiety" but do now. Not bad but it's there.
Just rolling with the punches! :-)
Lisa
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jobur! It's good to hear from you. Our brains definately need more than clear liquids to function well so happy that you are thinking better of a full liquid diet and back to living your life even if at at sloth pace. More answers soon! I understand the nervousness on not getting your Piqray. Hopefully you will restart soom!
Be well,
Lisa
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Greetings, fellow Piqray users. Thank you so much for sharing your experiences with this (and previous) treatments. It's so true - we gain so much valuable info, like remedies for SEs, from each other, not to mention the support and encouragement shared. I just learned that I've developed resistance to endocrine therapy. (No surprise, as I was on Aromasin for 10 years (2004-2014) after my original treatment for Stage IIIB. I'm convinced it kept my disease at bay. I also took Letrozole with Verzenio for 20 months (til last month.) That's when I learned there was significant worsening of the bone mets in my spine (seen on MRI) so I'm now done with that treatment protocol. Genetic testing shows that I have the PIK3CA mutation so my MO is now prescribing Piqray. I've already started Faslodex injections and will continue those with the Piqray. I'm going to try Piqray, but I must say it is with a LOT of trepidation considering all of the common side effects and QOL ramifications. My best wishes to everyone coping with this difficult disease and the challenging SEs of treatment! Your courage inspires me. I hope to have something helpful to share with you once I get started on Piqray!
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Hi all, Jobur, I'm glad you're getting to eat. It sounds like the MDs aren't providing guidance on how to add foods. Does your cancer center have a nutritionist you can talk with? I'd hook you up with a friend of mine (professor of nutrition) but she's through-hiking the AT this year and is somewhere in Virginia at the moment.
belll, welcome!
I have been at this two weeks. No nausea, no blood sugar issues, no mouth sores. Couldn't tell you whether it has made me more stupid because my brain was already fried. BUT. I have swelling feet and ankles? Anyone else have this? It's listed on the label as a side-effect, but the MDs are worried because my lungs are retaining water too. I have an ultrasound sometime soon to rule out blood clots but it feels like a drug side effect.
My other question is for those of you who took antihistamines to start with. I was alternating Zyrtec (which makes me sleepy) and Claritin. Did you stop after some period of time? Or are you still taking it? I asked my MO how long and he said he had no idea. They are making it up as they go along, LOL. I did get a weird rash on my belly -- looked like striations, but it went away after a couple of days.
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Pajim … I have been on Piqray for about 4 months with a 6-weel break in the middle. I did develop a blood clot in my left leg after an extended hospital stay (they didn't get me out of bed enough) and since then have had a problem with fluid retention, especially in my left leg and both ankles. Went to a lower dose (200 mg) and have fewer SEs. Had my lungs drained twice - the last time in January - but since then have had no more fluid accumulating there. I go to Specialty Rehab 3 times a week to have my leg wrapped to get the swelling down.
I hope things settle down now, because I believe the drug is working. No nausea and my lab numbers are better than they've been for a long time. Hope it works well for you too.
Kathy
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pajim,
I took Zyrtec for the first month. My oncolgy pharmacist said it couldn't hurt. They really are making this up as he go along. No rash unlike with affinitor which I had to stop. I had severe swelling in both legs and feet including thighs and my abdomen. Gained 25lbs in less than two months and looked like a damn pickle barrel. The leg swelling might have been from Piqray but MO thinks the abdominal swelling was fluid from my liver. I'm now on Lasix and Aldactone for the abdomninal swelling. Now I've lost the 25lbs and then some. Weight loss is a side effect but thankfully I haven't lost my appetite. That's n part to the diabetes I ave now developed. Grrrrr.
Take good care everyone.
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Oh good. The docs are a little puzzled, mostly I think because of the unknown-ness of Piqray. Cardiologist couldn't find anything wrong with my heart. The leg swelling looks like left-sided heart failure and the shortness-of-breath/lung retention like right-sided heart failure (or is it the other way around?). Except my Echo and EKG are normal.
I think the legs are just Piqray and the lungs are left over from Adriamycin. Once they've ruled the other stuff out maybe we can just treat the symptoms. It is a royal pain in the lungs not to be able to walk very far without panting.
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Welcome to the group Bell! Have you had Faslodex is the past? I'm wondering if Fas by itself might work for you even though you have become endocrine therapy resistant. Hopefully someone smarter than me can speak to this, I just know Fas works differently than the AI drugs letrozole and anastrazole. Fas did a number on my numerous bone mets even before I added Ibrance in 2015, so hope it can do the same for you. It may be a good fallback plan if you find Piqray to be intolerable. Not saying you will be, some of us had/have very few se's. It does seem to be a good idea to start on Zyrtec or Claritin to prevent or minimize rashes. Good luck & keep us posted!
Pajim, Good to hear you haven't had any bad se's like that rash last time. I'm sure you can handle a 1 day tummy rash. I don't recall anyone mentioning swelling feet and ankles before and never noticed it was a possible se, but sounds like Baywitch has had similar problems. I took Claritin and then Zyrtec for the first 2 or 3 months, then stopped. And no, I have gotten little to no guidance on what to eat. The GI guy who did my EGD said "resume normal (pre-procedure) diet". Does that mean it's time for a cheeseburger and fries or just back to liquid slop? (joke) I have had to specifically ask mo each time I've seen her for dietary guidance, and we haven't spoken since last Friday, so now I've been a week on full liquids. I'm almost to my dream weight, but unfortunately now look like a 6 mos preggo basket ball with stick arms & legs. I had the good fortune to be in line in front of the nutritionist at my local clinic this morning, so I picked her brain a little while we waited, and waited. Another story.... But at least now I know what to call the next step up on the diet chain (puree) so I can Google what's in it. Of course no doc has actually told me to go to a puree diet. Can you tell I'm a little po'd? Aren't you sorry you asked? ha ha! Sounds like SOB is getting you po'd too. I liked your "Once they've ruled the other stuff out maybe we can just treat the symptoms" comment. I feel like that is what is being done with my weirdness too, process of elimination. Gotta love it.
Hi Kathy! So glad you checked in! Sorry to hear about your fluid retention problems. That does not sound like any fun at all. Sounds like the lower dose has brought improvement, yay! Happy to hear your labs are improving too. Do you have a scan coming up any time soon?
IntoTheWoods, You and Pajim are so right, they are making it up as they go along. You probably already know this, but supposedly the high blood sugar issues that come with Piqray go back to normal once you stop taking it. I can't recall, have they already reduced your dosage?
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Making this separate as it is general info regarding se's. Someone asked a page or two back if others had hair loss while on this drug. I replied I had not, but should have been more specific. I have not had hair loss on my head. Body hair is almost non-existent. I was sitting in the sunshine putting lotion on my legs today and in the bright light could see a few very fine hairs poking up here and there, (I swear one was 2 inches long! Have not shaved for a loooong time.) Pubic hair is also all but gone. (Sorry if this is TMI.) I guess that is what most young women want now, but this old gal finds it very sad to look like a 10 year old again.
The other thing I notice that I am totally convinced is due to Piqray (and not mentioned anywhere I have seen) has to come with a confession I would prefer not to make. But, as this may be helpful to those living with lung mets, here goes, judge me if you must. I have been a smoker nearly all of my adult life, so around 40 years. Any long term smoker coughs up gunk constantly, and especially in the morning. Within days of starting Piqray, I noticed my smokers cough had totally disappeared. No coughing, no gunk. Now it is 21 days since I took my last pill and I woke up coughing the last 2 days, just like before Piqray. I don't know what this means, and I don't know if it is harmful or beneficial, but it definitely seems worth noting.
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Hello everyone,
Anyone here with experiences regarding the effectiveness of Piqray? So, CT scans that showed a decrease in mets or tumor size after the start of the treatment?
Now on it for 11 days, really hope it is doing something positive.
The best, Julia.
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Huh Jobur, I have a cough. It's started before Piqray which didn't make it any better. "they" think it's fluid in my lungs and sometimes it feels that way.
I'm glad yours went away though. Gotta have silver linings where you can find them.
Julia, there's not a heck of a lot of literature on Piqray, but here's the one paper I know of.
https://www.nejm.org/doi/full/10.1056/NEJMoa1813904 (Its free but you might have to register)
You want to look at Table 2 and figure 2. It says the 'clinical benefit' rate (which means complete or partial response) was 61%.
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Hi all,
My hair is thinning...sigh. My haircut is short and hides a lot. My eyelashes and body hair are also thinning too, almost don’t need to shave legs.
With MBC I seem to always have a cough but on Piqray it seems to be more noticeable. I think the original cough is from radiation scarring. On Piqray I’ve had a night time dry nagging itchy choking cough, i’ve had a wet “full of gunk” cough, now I have a morning gunk cough and later in the day it will be a dry hacking won’t quit cough. I’m in cycle 7 now. I’m still taking Claritin daily, I don’t want to find out what will happen if I stop.
Apparently on the last CT they saw a 30% drop in fluid in abdomen. I’m not retaining water on my legs but I certainly felt like I had a bag of water in my abdomen....now I don’t “slosh” as much when I roll over in bed.
Many of you will find that your taste buds are off. My tongue gets “tingly” some days and some foods just don’t taste right. I eat my fav foods (usually less quantity) and ignore my taster, it changes day to day.
Be well,
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Hi Julia, I have had both a CT and PET since starting this TX. Both showed improvement in liver mets (only a shadow left on CT) and mixed results for bone mets, some better, some worse.
Pajim, Thanks for the link to the article. Interesting about the coughing/ not coughing. I didn't miss the hacking and gunk but wondered if it was really a bad thing as lungs weren't getting cleared.
Pots, Glad to hear your "sloshing" and fluid retention is down. Sorry about all the different coughs. Yuck. I've had the tingly tongue thing too.
Woohoo! I managed to write a short post! (Small) miracles never cease, LOL!
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thanks for mentioning, and good for you!
I am aware of all scientific articles regarding piqray. Still very interest in real world examples of patients here in this group! Good luck to everyone
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Ok gals I'm having issues with my stomach. I burp a lot ,hic-up a lot and I'm also throwing up with a lot of acid reflux . Anybody else have this problem ? I can't eat and I'm losing a lot of weight . Help I love food .
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Kimchee, Piqray affects mucous membranes for some people more than others. Call/ask your MO for Nexium prescription to calm your GI acid production. Also have a supply of Tums or Rolaids to chew on when you get heartburn. Drink lots of water, as much as you can guzzle, especially if you are throwing up or have diarrhea. Also try eating soda crackers to settle your tummy.
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I'm with Kimchee here. 3 weeks in and I've started throwing up.
i take antacids and Zofran but I don't want to eat
Someone said it gets better over time? How much time?
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Kimchee, I am so sorry to hear of the misery you're experiencing. Do you have anti-nausea meds? You didn't mention nausea and perhaps the vomiting is more due to the acid reflux, but just thinking anti nausea med might ease the throwing up and help you feel better. I would not be without my Zofran! If you're losing a lot of fluids through vomiting and/or diarrhea, consider asking for IV fluids at your treatment facility. You don't want to become dehydrated. You may also want to get some electrolyte fortified beverages or powdered product that you can add to your water. There are a number of products available online that are sugar-free/sweetened with Stevia, etc. (Gatorade & similar products are loaded with sugar.) I haven't started Piqray yet (and I must confess I'm very uneasy about it) but thinking back to my original treatment with Adriamycin and how upset my stomach was, I remember nothing seemed to set better with me than mashed potatoes. Would recommend skipping dairy milk & butter in them, as they can cause stomach upset, but you could use some non-dairy milk, salt or other mild seasoning to cream and flavor them up. Could mix with mashed sweet potato too. Have you tried bananas, white rice, applesauce, toast? Along with the antacids and soda crackers Pots suggested, I hope something here helps!! Sending feel better soon wishes your way!
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Kimchee, I am so sorry to hear of the misery you're experiencing. Do you have anti-nausea meds? You didn't mention nausea and perhaps the vomiting is more due to the acid reflux, but just thinking anti nausea med might ease the throwing up and help you feel better. I would not be without my Zofran! If you're losing a lot of fluids through vomiting and/or diarrhea, consider asking for IV fluids at your treatment facility. You don't want to become dehydrated. You may also want to get some electrolyte fortified beverages or powdered product that you can add to your water. There are a number of products available online that are sugar-free/sweetened with Stevia, etc. (Gatorade & similar products are loaded with sugar.) I haven't started Piqray yet (and I must confess I'm very uneasy about it) but thinking back to my original treatment with Adriamycin and how upset my stomach was, I remember nothing seemed to set better with me than mashed potatoes. Would recommend skipping dairy milk & butter in them, as they can cause stomach upset, but you could use some non-dairy milk, salt or other mild seasoning to cream and flavor them up. Could mix with mashed sweet potato too. Along with the antacids and soda crackers Pots suggested, I hope something here helps!! Sending feel better soon wishes your way!
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jobur, belatedly, thank you for welcoming me to the group and for the note of encouragement regarding Faslodex. I'm so glad it did a number on your bone mets! I do plan to start Zyrtec D several days before starting Piqray. Seems like that has been very effective counteracting the skin rashes for several folks. No judgment here on your confession about smoking. In fact, I admire your honesty. I doubt that there's anyone who hasn't engaged in lifestyle choices that weren't/aren't health supporting. I regret that I spent much of my adult life obese and inactive - it probably factored into my disease. It's cool that the Piqray acted so well on your cough - interesting. I may have missed something, but are you on a break and planning to resume taking it? All the best to you and everyone on this thread.
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So doc. put me on a 3 day break from piqray and I'm feeling so much better . I have been taking pills for nausea and it wouldn't touch it ,same with anticaid pills, throwing up day and night . I hope he can fix this cause I don't want to stop piqray .
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Kim, I had to go back a couple of pages to see you have been on Piqray for more about 9 months, a little longer than me when I started having similar problems, belching, vomiting, etc. It took 4 days after stopping Piqray before I quit vomiting. When this started I tried Zofran, Pepto-Bismol, and Tums and nothing helped. After a week of D & V my potassium was dangerously low and my lipase terribly high. Since then I have had CT, ultrasound, and EDG (scope down your throat to look at stomach and organs) and all appeared normal, leaving only Piqray or ??? as suspects. I have been on a liquid or mush diet for a full month now and lipase is still super high. I'm glad you contacted your mo right away and are taking a break from Piqray. I would strongly suggest having your lipase (and maybe potassium) checked before attempting to restart this drug. Happy to hear you are feeling better now and hope you will keep us posted as to how things go from here.
Pajim, I know vomiting is listed as an se, but as I never had any of these issues when I started Piqray, I can't be of any help in knowing whether or not they will get better with time. In the meantime, PLEASE contact your mo and tell him or her what is going on. Don't try to tough it out and see if it will pass. I would suggest you also have lipase (and maybe potassium) tested. Sending a hug.
bell, Thank you for your kind words, they mean a lot. This damn disease can strike anyone, even those (Deanna, I am thinking of you here, may your spirit soar or rest in peace) who have always made healthy lifestyle choices, so please do not blame yourself. The coughing thing was just so weird and so pronounced (unlike some se's) that I thought it might be significant to someone else. I have been off Piqray for a month now and my hope of restarting at a lower dose is looking unlikely right now. I totally understand your anxiety about starting this drug, but keep in mind that some people (myself included, no problems before cycle 8) have few and very tolerable se's and good results. Wishing you all that as you begin your new tx.
Best wishes to all~
Jo
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Hi all, sorry for not getting active. I went to a IR and he said he would do the Y90 and then 3 weeks later, decided not to do it due to progression in my bones. What the hell! Very disappointing to have that hope snatched away. I am on the 4th round of Piqray and my TM only went up 30 points, so maybe it's kicking in? Not sure, but will be adding CMF for 6 weeks and then do my PET/CT scans. We are also going to do a liver biopsy to see if the cancer still has the mutation. I have had the big "D" for 5 weeks and after 3 types of medications, I think we finally have one that works. Oh happy day! Funny to celebrate this small victory and then I don't have to be a TP hoarder. My blood sugars have settled down and still taking the Metformin. I'm glad to hear everybody is hanging in there. I am on Loratadine for the itchiness and it seems to work well. Haven't had the rash. Thanks Jobur for keeping everything together. Take care everyone and stay safe. Lisa
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Lisa,
If you still want to do the y90, you could consult with another IR. I haven't had y90, but I had a microwave ablation to my largest liver lesion. I seem to have some bone involvement (although one scan says yes, the next says no, all healed) but my IR has never mentioned bone involvement to me. I think that some IRs will only do the liver treatments if they see it as curative, but that is not all of them.
Good luck.
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Jo, I think your advice is sound and twins with what I was thinking. If the vomiting was a one-time thing or one-time-a-week thing, OK. But if I toss my cookies again tonight I'm stopping the drug and reporting in.
I've also been taking Lasix for fluid in my lungs and legs. It's possible that my electrolytes are out of balance. They were OK on Sunday. I'm supposed to have a blood draw on Wednesday.
Need to balance this against going down to the cancer center for blood draw. I'm trying to stay away from the hospitals if I can. Compromised respiratory status are me.
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Hello ladies,
I've been missing in action lately. I'm so sorry to hear about the issues so many have had with vomiting espcially after having been on the drug for awhile. Mediclisa, yea to the end of D!
pajim I hope you have stopped vomiting. I'm with you on trying to stay away from clinics. I'm on lasix and aldactone and supposed to get weekly electroyles. I skipped his week and trying to coordinate with other labs that get ordered. Same with trying to coordinate faslodex shots and zometa infusion.
My side effect is the blood sugar and huge weight loss. It's a freaking full time job between testing my glucose three times a day, insulin shots and meal planning for what I can eat with diabetes. I'm used to eating whatever I want. Don't get me started on keeping the right foods in the house. Los Angeles markets continue to have issues with empty shelves. But we are fortunate that eventually we get what we need and are grateful for it.
Wishing all well
Lisa
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