Ibrance (Palbociclib)
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Thanks for the encouragement and suggestions ladies! The Spine MRIs were done in one shot so I was on the table for 2+ hours. It was difficult pain wise, but I made it and I'm always proud of myself when I'm done! I took an Ativan and watched a movie (My Big Fat Greek Wedding) with the goggles. picked one I had already seen just in case I got done early or dozed off. It's amazing that the scanxiety just lifted once I was on the table! Now it will start up again in a few days when I think the doc will have the results. I'm having my first PET scan next Tuesday. Praying this Ibrance/letrazole is working and can continue for a long time. I'm only 4 months in to this and not ready to move on yet.
Grannax you inspire me!! I'm 14 years since my original diagnosis, 8 years with METS. I would love to see this 25 years out!!
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SusanR and Z, thank you. I hope you both get to see 25 years out.
My name grannax2 is because I have two amazing grandchildren who call me Granna. They are the best, the smartest, the most talented grandchildren EVER. And I'm sure any of you who have grandchildren would say the same thing. They do inspire me. I want this treatment to work because I don't like to see them be sad.
Z you have liver mets, right? I do, too. But I don't seem to have any pain there. Do you? I just assumed liver mets would be painful.
I am so glad my tumors are er+her-. I didn't know anything about Ibrance before I went to MDAnderson. And you mentioned another one Z? When will it be approved? I have an MO here in the Dallas area to oversee my care. It's so much easier and convenient than all the chemo I've been though before. But, on the flip side, it seems sort of silent and solitary. I'm sure part of that is because I live alone, my husband died of pancreatic cancer in 2010. I do have family and friends close by.
Before this dx of mets, I had never posted on a forum. I think posting here and having this online support group will be my new normal.
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Grannax2~ I agree the support here is endless. Something we all need. I had some blood work today after a month , the month flew. Sometimes I think time flys after you have lived it, not while you are in it. I am seeing my onc on Friday for a check up. I'm hoping to hear stable again. Haven't had a scan in over 4 months and I really don't want to hear those words scan time. I'm hoping he will say 6 months. I would love the chance to see my grandchildren and my kids even get married. Scares me to no end, they are 20. & 21. Good kids. I just want to grow old on that porch sitting in the rocking chair, with my love of my life. I am sorry for your loss back in 2010. Rest well ladies. ~M~
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Grannax -
I have liver mets, no pain and the smartest most talented children ever. So much in common! You don't happen to have the most amazing cats on the planet, by any chance. If so this is spooky!
There are two main CDK inhibitors in the pipeline. Ribociclib should be out soon. All they need at this point, I believe, is a groovy brand name and it will be released. Ribociclib looks too similar to palbociclib/Ibrance to be very exciting. However, I hope it provides some price competition to Ibrance so this class of drugs will be more widely available. Abemaciclib may take a year to come out, but seems to offer some meaningful improvements over palbociclib/ribociclib.
My oncologist was excited about ribociclib today, suggesting that it is more effective with fewer side effects. I haven't seen that in the data released so far. I think she was just trying to be optimistic and cheery, but who knows. She could be right. We haven't seen the full data from the latest clinical trial. Maybe we'll all be on ribociclib in 6 months and ibrance will be searching for a reason to exist. They are certainly so close that they duplicate each other.
I discussed dropping my dose from 125mg to 100mg with my onc today. My neutrophil counts are fine, but the other side effects have been a challenge. I haven't seen any data that shows a difference in efficacy between doses so i don't see the point in slogging through the rashes, fatigue and scalp pain. She said that she has seen data that shows no difference between 125 and 100mg, but a drop in efficacy when you go to 75mg. I told her that I would be very interested in seeing that data, but she could not produce it. I think that is her gut feeling but not solid data. She is a good clinician, but not a research oncologist. I'd be interested if anyone working with a major cancer center has any input here.
>Z<
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Hi All - I'm 10 days into my first round of Ibrance with Arimidex (Anastrozole actually) and so far it a been mostly anticipation of rather than actual side-effects. I did/do have a little indigestion sometimes after taking the dose with my evening meal. I'm now taking it at then end - not sure if this will help.
I have a small question, I suffer from arthritis in my knees and one hiip, which comes with also quite a lot of stiffness in the morning or if I sit for a period of time. I think it might be a little worse since taking Anastrozole - but I've had a level stiffness prior. I wanted to ask what everyone takes for pain. I was thinking of trying to have a period (say 4/5 days) where I take pain killers consistently every 4/6 hours to see if this helps, and because I'm getting fed up of being in pain. But I wondered what sat best alongside Ibrance - given I got indigestion already. My first thought was to take ibruprofin, rather than to head to something stronger. But I'm concerned about my stomach. Perhaps Acetaminophen- I see they do an arthritis one. Any ideas?
Thanks
Sarah
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Does anyone ever have to self medicate in the morning just to calm down? I am such a train wreck today. I think it's anticipation of what number my platelets will be today. Can't start Ibrance until they are up and on Tuesday they were only 54😰. So more chemo today. I have been doing chemo since November first. It's starting to wear on me.
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Dianarose, I'm so sorry for what you are going through. There are times when I feel the need to take a zanax just to manage the anxiety. I'm not even sure what brings it on but if you need something, there's no shame in getting a little help. There are many women here on the boards who take medication for anxiety regularly. I will pray thatyour platelets come up today.
Sarah, it sounds as if you're doing well on the Ibrance, my first days were rough getting started with nausea and dizziness until my body got used to it. As for the arithiritis pain, lots of us have that and exercise helps a bit and I think any pain reliever your body can handle is ok but I try to stick with Tylenol when necessary as my stomach is sensitive to so many things. One other thing, some women seem to think that Claritin helps the pain. I take it for that and my allergies, not sure if it helps or not.
Z> it sounds like you haven't made a decision yet on dropping the dosage to 100mg. I so want to do that but at the same time it worries me. I think I've decided that after my scan in April if all is well I will have that discussion with my MO. We really have never talked about it.
Hugs to everyone,
Faith (in the future)
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Faith - I did make the decision to drop to 100mg yesterday. The bottle that arrives on Friday will be 100mg. I haven't seen any evidence of a difference in efficacy between doses reported in the clinical trial results. I think it is a good idea to stay on 125mg to give the drug a fair shot, but you and I are obviously responders given that we are grooving on cycle 15 right now. Ibrance could be a long term thing for us. As such, we have to consider the long term effects of the drug on our overall health. I am moving to 100mg without any doubts. I would say that dropping after a good April scan is a great plan. I'll be scanning in late april as well. We can have scanxiety together!
My onc suggested that there is data to suggest that we should not go to 75mg. I expect that 100mg puts an end to side effects, but I've asked her for the article because I am interested in the topic. I'm sure others would be interested in the info if it exists. Does anyone out there have that data?
Sarah - hormone suppression alone will cause joint pain. It is interesting to join a thread where people are only taking your hormone suppression med. You can see the common side effects of just hormone suppression. I am on letrozol and joint pain is very common with this drug. I do think you have a layer of drug induced joint pain on top of the arthritis. I take horse doses (2000mg/day) of liposomally encapsulated (Longvida) curcumin and a teaspoon of AmlaPlex every day. I do a 12 pose yoga sequence that takes about 15 minutes every day. The difference between doing yoga and not doing yoga is huge as far as pain goes even though we are talking about only 15 minutes. It would be worth starting with the yoga and see if that does not take care of it. Join us on the Stage V fitness thread for details. I think the 12 pose sequence should be required for anyone on hormonal suppression.
DianaRose -
It takes a great deal of courage just to get out of bed in the morning when you have MBC. I am grateful for my kids because every morning when I wake up I face a chaos of needs totally unrelated to cancer. However, today, on top of that you are facing a critical blood test that will determine whether or not you can start a treatment you need. It can be too much. Anti-anxiety medication is definitely the way to go. You need to keep your head on your shoulders to deal with all the decisions and work ahead. Some of those medications also help with side effects from the drugs, like hot flashes. Win win.
I am thinking of you. What chemo are you on? I am wondering if the chemo is immunosuppressive? Do you think your platlets will ever go up as long as you are on chemo?
>Z<
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Z I do happen to have one of the most amazing cats on the planet! SPOOKY. But, only one. When Bob was alive, we never had only one pet. Seems easier for me now. He's a rescue and is a Lynx-point Siamese. Evidently, the mom was a grey tabby an d the dad a Siamese. He has big, beautiful blue eyes and he's spoiled.
My absolutely perfect grandchildren are coming here on Saturday. So, I'm trying to plod through my "forever" cold to get my house presentable. I've had what seems like a head/sinus cold since I started ibrance. No fever, just congested and not much coughing. I have not had any skin or scalp irritation.
I'm looking forward to seeing my grandchildren.....oh, and their parents , too.
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There is some research indicating that women on aromatase inhibitors with low vitamin D levels benefit in both skeletal pain and bone density loss from vitamin D supplementation. Perhaps discuss this with your health care provider.
https://www.ncbi.nlm.nih.gov/pubmed/21691817
https://www.researchgate.net/publication/264009698...
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z- I am on a low dose of A/C. Platelets went up a bit to 96 and tumor marker went down from 202 to 182. So things are going in the right direction just very slow
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Thank you to everyone for your advice, its given me a real boost to do something about my stiffness and pain. I think it might be the Anastozole. I have been stiff and had sore knees before, but I hadn't thought through that I am actually worse now. I have previously tried yoga - but fond it too painful - particularly on my wrists. I know its meant to be individual - but when you are in a class its hard not too compare. But I do feel I need to look at better morning routine. We used to do Yoga at home when my sons were younger (they are 18/20 now) on the Wii - and I think I might get that going again to give me a structure. I know I am my own worst enemy when it comes to getting disciplined and on a routine. Talking to a friend this morning she mentioned a morning stretch/yoga routine too. I'm trying to go swimming at least 3 if not 4 times a week. My son, who is on the U of Washington's track team, is my fitness 'manager' and keeps me going by texting asking about my swims went and agin me if I haven't gone. It really is a boost to finish a swim, get a quick steam and lovely shower.
Diannarose - its good to hear your results are going in the right direction. These sort of test alongside scans are all we have to let us know thats going on - its hard to go through each day not really knowing what is going on inside us. It reminds me of being pregnant - because each time I had a scan or test result that was a big tick for that day - but you can never see whats going on inside. We have to have a level of trust we are on the right course and your results seem to bear this out. I hope you are now less anxious. I am having my blood levels checked on Monday, as I have just started Ibrance. I am not too worried because I don't yet feel too tired. I am due to head to the UK from California on March 25th for a weeks visit so really want to stay well and stay on Ibrance.
Timothy - Thank yo for the links. I did have low Vit D levels a year or two ago - and I now take a Vit D supplement each morning. I wanted to make sure my levels were good enough - as they had risen but are not fantastic. So Ive asked for it to be checked on my next blood test - which is actually Monday - just to make sure.
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Diana ... everything is moving in the right direction. Step by step .... hang in there. I love low dose chemo as a strategy , but I am sorry it is still hard on you.
I do think light exercise can do wonders for your mood and reduce side effects.
Scwilly- you exercise plan is right on target. Glad your son is your trainer. Just keep at it.
Z
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I agree with Z, exercise does wonders for our mental state. I will say that Yoga is the best thing for me for my joint and back pain. I also take turmeric, d3, Claritin and use essential oil frankincense. I get down when I get tx because it makes me feel sick. I hate it. Exercising does help but I think that one thing that depresses me too is the fact that I am foggy mentally. The day after tx at work I just can't get with it. I went to the grocery store after work while my oldest had baseball practice and I left after loading my groceries. I went to get gas and realized I left my purse in the cart. I got very upset and I just started crying. I never do those things but my mind isn't the same for a day or two after and it gets to me! I am a wreck this past week anyway from scans and I'm still fairly new to all this! I just can't help. It being afraid to not see my kids grow up. My kids are 14, 9 and 7. It just sucks, i wish we all could just have our normal lives back!!
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APG~ I completely understand and know how you feel. We all do. It's just sometimes surreal. I have had nothing but bad luck since diagnosis, the same week my daughters purse was stolen and today I found out someone compromised my bank account and took $380, of money that as we know can't be just lost. I also just broke down and started to cry the same exact words. Why cant I have my old life back? Sometimes just getting out of bed is over whelming. I heard Z say that this week herself I believe. Been a rough week for me. Last week I kicked butt ,but Wednesday I had my Xgeva shot and it causes back and groin bone pain like the dickens. Holy Hannah. All of this still brings me to my knees at any given time. It's like a refusal to accept that this is just how I am now. But i can honestly say you all help me know, I'm not alone in the daily battle. They don't call it a battle for nothing. Rest well ladies. Fight hard! Also, I believe that with some of these success stories that ibrance is bringing, I believe we are all going to be around for quite a while! It is just that the darn side effects are so harsh, not to mention the mental aspect. It's all so exhausting!
~M~
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Dianarose~ 💪 You are a warrior! I am so glad to hear that you're moving in the right direction! Sending prayers daily. Rest well ~M~
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Z, I'm happy to hear you'll be moving onto the 100 mg dose as I'll be watching closely and hopefully right behind you. I probably won't be able to get the 100 mg dose until the end of April if I wait for the scan results to make a decision. I hope I'm as comfortable with the decision as you seem to be. You're right about the scanxiety. I was feeling fine about it but the closer it gets the worse it is. We're going to think very positive about this whole thing.
Hugs to all, sleep well tonight.
Faith (in the future)
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I used to run a company with 100 employees. I was the one in meetings who knew what was going on, who did what, what will happen and where everything is and then put it all together into a plan to execute. Now if I can organize myself to go to the grocery store and come back with most of the groceries I intended to buy and my wallet, I consider myself a hero.
I hide my diminished function from my former colleagues and friends because it is too weird to be explained, and extremely painful. With people I know casually, it is very embarrassing and I don't want to expose this weakness. Executive function used to be my superpower.
I am open about my diminished mental function with my family and very relaxed at home and that is the saving grace. They find it hilarious to see Superwoman unable to stay on top of the family activities schedule. And when it comes from people who love you, the joke is very funny.
But trying to get through a work day with people who aren't there to support me, well, I don't know how people do it.
Today was a good day. I felt "strangely" alert and on top of things. A bit of my old self for a few hours. But I could lose it tomorrow. The ups and downs are hard, but I am glad for the ups.
Apg - It's realistic to be afraid, but it's also realistic to be hopeful.
Micmel - It was rough week but you got out of bed! Nice job. If you get out of bed it is a win, the rest is gravy.
>Z<
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Friends, I'm always looking for encouraging news for us and this came my way today. I realize the leap from something working in mice to healing humans is sometimes large but this one makes me feel extremely hopeful. Just go to Dana Farber's website and read the whole article.
I think it's www.dana-farber.com.
"In a new study in the journal Nature, Dana-Farber Cancer Institute scientists report that a compound able to reverse the allegiance of innate immune system cells – turning them from tumor enablers into tumor opponents – caused breast tumors in mice to shrink and withdraw from distant metastases. When combined with chemotherapy or another immunotherapy, the new compound significantly extended the period of tumor remission.
The findings suggest a way to bring the full repertoire of the immune system to bear on cancer in humans, the authors said."
I can't wait for some of you to switch to 100mg IBrance. My oncologist refuses to start anyone on 125 as he says this dose is working on all his patients. He just went to an oncology conference and said the immunotherapies were the star of the show. One of the main speakers told of his patient who had been on IBrance from its beginnings and how well she was still doing. Maybe it was one of you!!
If I wear you out talking about Turmeric, I apologize. I have been on AIs in the past and have had lots of discomfort.....pain in hands, one leg that gave me fits and such a problem with the bottoms of my feet! I'm an artist and I could no longer hold a brush in my hand. Six months in on this Arimidex and I don't have any of that. Maybe it's coming but so far, so good! So get you some of these big old horse pills and see what you think. You might also try Bragg's Apple Cider Vinegar. I have friends who use that with good results for joint pain.
I'm sending big hugs and saying many prayers for all of you. I'm finishing my two days of feeling like a boneless chicken after the XGeva shot so I hope to get out and walk tomorrow. You all help me to remember that we still have lots of control over the quality of our days. Here's to laboratory mice and dedicated researchers and warrior women like us!
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Micmel, Did you get my pm with the exercises? Just wondering...
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I think self image has really taken a toll on me and I am sure a lot of you as well. I had lost so much weight that I looked like ET. Then being bald , no eyebrows or lashes I look like Yoda lol. I have about 10 wigs and hate them all. They either look dumb or hurt my head. To top it off I have a naphostomy tube coming out my back with a bag strapped to my leg. Not real sexy. Have had it since August 😖. So no swimming, shorts or dresses other then maxi.
This brings me to a guestion about Ibrance. Does it just keep the cancer stable or can it possibly shrink or kill some of it? I would love for it to get rid of the cancer or lymph node that is crushing my right ureter so I can get rid of this bag.
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Hi jobur~. Yes I did thank you. I pmed you back. Awesome people here. thank you all for encouragement and support!
Dianarose~. I have heard yes it can shrink the tumors or even kill them. Have read many many articles to that effect. Still praying your counts stabilize!
Going to see my onc today, had blood work done. Just don't want to hear the word scan. Not ready for that yet. All I can hear in my ears is that darn rolling cart he drags around with his computer on it. Roll roll. Noise noise. Never leaves my mind. Such things we learn and associate with this horrible illness. Stay well ~M~0 -
Just finished round 2 and have to wait a week to start round 3.
Low WBC at 1.4 and Neutrophil .9 th/mm3. Met with a NP Doc last week and he advised to go off all supplements except vitamins. Even Turmeric? And eat a high protein diet. Meeting with another this week.Grannax- Scans also mess with my head! Also have my first follow up since starting Ibrance the end of this month. Just scheduled it yesterday. NP I met with yesterday mentioned vitamin C for nose bleeds.
SusanR - I think I also felt better after the first round but now every with twinge in my back I am thinking it must be more cancer. Hopefully after this next scan, things will look good and I can calm down a bit. Going to do lots of QiGong today! It really helps with the anxiety.
Singlemom - So far SE's are good except fatigue. Hoping that will get better as well. When I was on Armidex, SE's were awful! I could not sting 2 thoughts together for the life of me. I have many stories but the best (scariest) was when I was pulling a skier behind my ski boat and hit a sandbar at full speed. I just wasn't paying attention to the multiple things you have to when driving a boat. Luckily nobody was hurt and we got the boat out but they now call that sandbar "Perky Island"! Geeze! Very happy to have those SE's behind me. I don't really notice anything other than muscle loss and old lady skin with the Faslodex. And then again, the SE's from Armidex only become noticeable about 6 months after starting.
Z- I would guess the burning is a sign of positive movement as well. Imagine those cancer cells self-imploding! I wonder how much the Famera has to do with reduced mental function? I got an amazing improvement when I moved from Arimidex to Faslodex.
PinkPunk-Absolutely plan a trip! I have a few planned for this year and planning a cruise through the Greek Islands with 3 other couples for next year. I keeps me going.
DianaRose- So glad to hear moving in the right direction! Mediation has helped me so much in calming anxiety and that little voice inside that keeps thinking about the worst! I like QiGong as it is movement based but have also done other styles. Once I was able to learn to relax and calm my mind, it is amazing. But it does take some time to learn how to "go inside". Here is a link to the style of QiGong I practice: Tian Yuan - First Method of Yuan Gong Just the music is calming!
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perky thanks for travel heads up and Z for travel insurance recommend, and to all for keeping me up. Just finished my first round and freaked when neutrophils dropped from 5 to 1.1 Mo didn't flinch,so started my next round. It's all of you that gave me the info to not freak out..... Lovely to have headaches and mouth sores back so soon.
Going to Disney in a week - will ride something for all of you.
ps My son-in-law is a pathologist and I was a marine biologist so we both love microscopy and physiology. He reminded me all these drugs go through the kidneys and stress them so drink lots of water... pee should be clear (haven't got there) any extra over the counter meds stress them too.
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jobur~thanks so much for the excersises, I tried my first set today and I'm hoping for the best.! Thank you for taking the time to send them to me! I appreciate it so much. I just got back from my oncology appointment. My blood work was perfect and he said my tumor markers have plummeted, which he said means that the medicine is doing its job. He was even happy and joking with me at how well I was doing. It was a good day for a change. Usually I have my mind made up as doom and gloom. This medicine is truly amazing.
Z~ I specifically made it a point to ask him about the doseages, (they call him the cancer bully in the medical circles in suburbs of philly, and works hand in hand with the university of Pennsylvania cancer center/ Penn medicine ) he said the recommendations are 125mg and that's what he also has seen incredible results in. He said there can be a slight risk of slow and slight progression if the dose Is changed on a very active cancer. He said unless there is no way it can be tolerated, staying on the recommended doseage is the best way to keep the stronger targeted approach to prevention and movement. I only want what's best for all of us ladies. I want all the information I can get to share and give us all a chance to kick this to the curb. He is scanning me in two months, which puts me out 6 months from the last scan. I hate side effects and was wondering if a reduction was an option for me as well. Please keep me posted on how you feel once you've lowered your doseage because I agree, already some are bad and I am in no way near the cycle # you are.
I am about to begin my 5th round.
He basically wasn't even concerned about the scan. He was all smiles. I'm praying it continues and realize the longer one is on it , perhaps the side effects are worsened. I'm just a rookie. But always ask as many questions as I can. Rest well ladies. He also said. Excersise is essential for survival. Because your body is constantly fighting itself almost. The more stamina you can build the better your armor to fight back with. ~M~
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Micmel - I really appreciate sharing the perspective of your oncologist on lowering the dose. I agree that it would be a mistake to lower the dose if the cancer seemed active or on the move. It is a good idea to push the dose in the beginning to see how much you can reduce the tumor load on this protocol.
I made my decision to lower my dose in the context of a large reduction in tumor load in the first 4 months, stable scans since july of last year and no real hypermetobolic activity in my last two PET scans. I am on cycle 15 of this stuff. Once things are under control, it seems to me I have to consider the possibility this treatment protocol could go on for a long time. I want to maintain my overall wellbeing and avoid the long term side effects that we don't know about since this drug is new.
I got my 100mg bottle today...
>Z<
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Z~Can you please share your side effects and keep me posted on how you're feeling with the new doseage.? I totally agree on the discomfort and personally would also consider lowering as well which is why I had asked because I know you were doing it. I hope that you have none. You got the bottle? Is it the same doseage as far as, are you on 21 days on and 7off per cycle?
Snowed here yesterday. So I'm walking in doors. It's like 20 degrees. Yuck! Have a great weekend ladies. Rest well
~M~
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-Z- Good luck on the lower dosage! We are all very interested in hearing how well you do. I think you are the only person I know from the boards who has elected to reduce the dosage for QOL reasons and not be forced to reduce it because of neutropenia. Has anyone else reduced their dosage to lessen side effects?
Hello to everyone. I read daily, sometimes multiple times a day. The bone mets thread and the Ibrance thread are so fast paced. Very hard to keep up. You are all in my thoughts.
Cathy
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Cathy - As far as I am aware of, I am the only patient who made the case to lower the dose to their doctor; however, there are a few doctors that don't start at 125mg. At least two people on this board alone were started at 100mg just because the doctor did not believe the maximum dose is necessary. Certainly, most people follow the maximum tolerable dose theory where "tolerable" is defined by ABS neutrophils > 1000.
There is an assumption in medical oncology that the Maximum Tolerable Dose is the way to go, but it is largely untested. The clinical trials are structured with the MTD assumption built in. They do not look for the Minimum Effective Dose. It's important to understand that MO's were trained to think this way and they can't always see the box they are in. It's an issue to consider with all drugs. We love our oncs, but they are human.
In general, I think oncologists underestimate both side effects and the importance of overall wellbeing in thriving long term. They have been focused for years on getting people another 6 months. The conversation with my oncologist on lowering the dose was funny in that sense. I talked about unknown long term side effects from Ibrance and you could see her mind turning .... long term side effects? It's not a concept she has thought about. Yes, doctor, I am worried about long term side effects ...
There is a lovely lady on Inspire who just when through hell since christmas when a blood vessel broke in her brain. Likely cause is the aggressive chemo and radiation they did early on.
Faith - I will follow the same dosing schedule; 21 days on, 7 days off. I was on day 13 of a 125mg cycle when the the 100mg bottle arrived. I am going to switch to the 100mg pills for the rest of the cycle. I'll use up the remaining 125mg pills in the first week of the next cycle and then the following cycle will be 100mg.
>Z<
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Just received my bottle of Ibrance yesterday (125 mg) and am not looking forward to starting. I underwent lumpectomy, 5FU chemo and radiation in 2007 and even though these are just pills it is scary (and expensive). I am looking for any information or advice I can get about diet and lifestyle as well as side effects. I really look forward to reading more of your posts. They have been most helpful and encouraging.
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