Between the Devil ( the red one) and the deep blue sea
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Marybe, I am so happy to read this! The tide is turning for you!
EUROPE?!?! Way to go! Enjoy every minute, my friend. You deserve it.
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Marybe, ask the pharmacist (who'll ask his assistant anyway) to halve the pills for you! That's what they're there for....the pharmacists, not the pills...
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Another idea might be to take one every other day, assuming the effects are cumulative. It might be just as effective and a lot less frustrating than trying to cut the tiny pills.
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The ribbon cookie arrived intact to me...didn't stay that way for long though
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Marybe-have they ever suggested Neupagen or Nuelasta to boost your counts? I have never had to do them before but I am going tomorrow for a shot. I had my 2nd tx of the Perjeta and my counts are all in the toilet-to the point where he doesn;t want me leaving the house-or ifI do wear a mask. Not sure since you are on a weekly dose how that would work but you could ask.
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Oh, I hated neulasta....it was like having the flu....no they did not suggest it. White count is 2.6...last time 2.7. I have not had a cold for years or anything other than chemo SEs. EF was worse so I am stopping by Cody's onthe way to work to ask them to get started on new game plan. Cardioloist's office called me and they said we really need to start working on upping the coreg to 2 tabs twice a day....will try two tonight as it doesnt matter...can go to bed and read or sleep or watch tv. It is now 35 -40.....was 45-50 last month. If my tumor markers are down when I call, I will be bummed but we can't keep destroying my heart and know onco agrees.
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Marybe I sure hope your heart is doing the right thing so you can continue on the Adriamycin.
Love n hugs. Chrissy0 -
Thinking of you and hoping for the best, Marybe.
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Hmmm, not great news. I'll be interested to see what your onc comes up with! Please let us know as soon as you can.....I can smell that turkey dinner already!!
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Hey Marybe, I hope you are back home and relaxing with the kitty from up the street.
Hugs Ginger
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Cookies just arrived! and straight to my apartment mailbox - didn't even have to go to the Post Office. Pink ribbon was broken but only in two and trust me it doesn't even exist anymore (well it does, in my tummy for now) - thank you so much - what a nice thing to do.
Keeping everything crossed for you that you get the heart issues solved - how are you actually feeling??? Glad you're going to pile up and watch TV tonight and try out the Coreg.
Big hug, Sandy
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Marybe, maybe CoQ10 would help with the heart issue? I took it every day when I did adriamycin to protect the heart, it was 290 mg a day. Time will tell if it helped or not. Its pricey to take that dose but if you have Costco they them at 150 mg per pil for about $25 which was really really cheap for that dose. And Costco is always good quality. Maybe you're already taking but I just wanted to mention it.
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Btw the 290 mg is what was recommended by Patrick Quillen in his book Beating Cancer with Nutrition.
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COQ210 isn't "Nutrition"!!! Why do they say that, and then throw in chemicals?? Even if found in nature naturally, they are still chemicals!
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I actually didn't know exactly what CoQ10 was. The book was really good imo. When I was first dx'd I bought SO MANY books and that was the one I always reffered to while the rest fell by the wayside. It was mostly about food and vitamins and what the benefits of each one were. He was the Director of Nutrtion at CTCA. But you're right, the book was about nutrition but also a lot about supplements. It should have been called Beating Cancer With Nutrition and Supplements. Haha. Do you think the coQ is a bad idea? I don't want to suggest something that might be bad. I've read good things about it but I don't recall if I read any actual studies.
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Just Googled COQ10 and you can take up to 3600 units a day!! It is already made in your body, so as a supplement, may not do any extra work. I LOVE Dr. Google!!
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marybe, im so glad you've booked the trip. i knew how badly you want to go.. my carrot is a lot smaller..
the dr said its gonna be the hospital again, for iv antibiotics. our kitchen is FINALLY getting done this wkend. then, hospital, and when im (finally) clear, we're going to stay at the beach (where we went marybe) for a few days.. its nice that we live in a tropical paridise, thats for sure lol
btw: ive been a little put off by the comments that " i wasn't sick " when i had company..
like im picking this now.. please, im so sick, i don't need anyone jumping on me when im down.. id appreciate it greatly. i don't usually say anything, let everyone be who they are.. but that one got me..
anyway, want more details of all the trips yall are making.. some vicarious fun would be good.3jays
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No one thought you weren't sick when you had company, 3jays. We all knew you just put your all into the visit. I do that too, and then am bedridden for a day or two afterwards, so I know how you feel. I made that comment, and without looking, believe I said "you felt better". Better does not imply cured or healed. Just uplifted. I apologized profusely on another thread for making that comment and how badly it was interpretted.
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I will fill you in on what has been going on with me. I got the results of my CA27.29 which was done on Tues when I got treatment...204 so they went down even more....a good thing. Then I got the results of my echo which I had done on Wed and my EF went down even more....now it is between 35-40, the one last month was 45-50...so that is bad news. I was surprised at how fast the cardiologist's office contacted me....that same morning. The nurse PA called and told me the results and said I needed to double the amouth of coreg so now I am taking two tabs twice a day. I told her I thought I was tolerating it pretty well and that myBP was low, but normal for me, however my pulse is running high....like in the 100s. She said that is because my heart is having to work harder to pump and hopefully the increase in meds will help it. I told her I was only taking half of the lisinopril pil which is a real trick to half since it's a really teeny weeny little pill and she said just to forget it, the coreg is the one I need. So I started on the larger dose Wed. evening. The main SE is that is makes me really tired....fatigued, just want to go to sleep. Fortunately I didn't have to go to work til late on Thurs. and Friday I only worked half a day and it was without the dentist so that means I run on time and got out of there at the scheduled time. The plan was to go to my Dad's, but I called him and told him I was tired and would come on Sat which is what I did. I brought the dog with me and I tell you he thinks he is on vacation when he is here....he's the only dog and he's got toys all over the place and my father and I will actually tug on his toys and play fetch with him which my husband never does with him....plus he loves the squirrels that hang out in my Dad's buckeye tree.
Anyway, I brought some leftovers with me and there is never a lack of food here so told my father I wanted to eat in which we did and I napped in the afternoon. I got a bit concerned about my breathing....when I am lying down it feels like something is pressing on my upper chest and I had this deep wheezy cough. I also could hear myself making these weird nosies when I would breath and could not tell if they were from my nose, chest or throat, but they were definitely not sounds I normally make. It wasn't a gurgle, but it was sort of a little popping noise and sometimes it was like a little whine....this morning when I woke up it sounded like a cat whining, but it was me. Also I was getting very winded if I walked any distance at all or climbed the steps. I called my friend who has the heart and lung issues and does a nebulizer every day and asked her what she thought and she said Call your cardiologist, it may be a reaction to the meds. I said, but I stopped by the onco's on Thurs with a list of questions and they actually took time to listen to my breathing and took my pulse.....the nurse who did it said hers always runs in the 100s when she is working. To that Kathy replied, but they aren't cardiologists, they are only interested in one thing, your cancer. I remember my mother said the same thing....she had a terrible cough which they did nothing about....ended up going into pneumonia and she went into septic shock there at the end......when I asked her what do they say about that cough, she said Oh they don't care about anything except my cancer. So maybe that is true. Anyway, I did call the cardiologist's office and knew there would be no one there, but there was a service to leave a message on if you thought you had a problem or a concern so I left this long message ( what me, being wordy?) about my breathing and the noises I was making and how I was getting short of breath easily and they surprised me again by calling me right back. This cardiologist's office is really on the ball. The nurse PA who was on call had me describe everything, asked about my ankles if I was retaining water and a bunch of other questions and she feels it is more an issue of water retention than SEs from the coreg....told me to stay on the coreg. She said maybe the HCTZ is not enough and maybe I need lasix, to keep track of my weight ( said if it's more that 2 lbs up in a day that is not normal) and to call on Monday....so that is what I am going to do. I wear the support hose all the time now and if I don't wear them you can really see the difference....some days more than others and normally in the mornings they are back to their usual size. I think the cough is a little less pronounced today....not as crouppy (sp) sounding , but I still feel a pressure in my upper chest and throat. Oh, and I guess my thrush is back, throat not as sore, but I have the blisters in my mouth again. This was starting on Friday and I thought my GP who prescribed the niastat rinse was in on Sat, but I guess not any more since I just got a recording when I called and the recording did not mention Sat. hours so that meant I could not get a refill on it. I just smeared kenalog in orabase all over my tongue and the one cheek that had a canker sore last night and it feels better. This problem was much better so I guess could be from the Adriamycin even though they do have me suck on ice when they do the push.
Anyway, hate to be so full of complaints but wanted to let you know what is going on. I seriously doubt if I am going to be getting any more of the red devil, but I was wrong before. All I can say is I do not like this breathing issue and fatigue at all and just keep thinking Oh Man, I have to get in shape for my trip....Want to be clomping around on those cobble stone streets and need to be able to keep up with my friends. Since I did adapt to the lower dose I am hoping that I will also be able to adjust to this one in a week or so.
I slept in this morning, but now my Dad is back from church so I think we are going to a movie.
The Adriamycin is still working...204 is amazing, but alas it is also still damaging my heart so we have to weigh this all out before proceeding. I left a big list of questions at the onco's when I stopped by there Thurs so they will have time to to figure things out and be able to give me some answers.
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Thanks for the update Marybe. I am sorry to hear about these heart issues and so frustrating because the devil is working so awesome on the cancer! So we need to think of another way to do the same benefits without the heart damge. Simple right? Ha. Darn. I hope you can get to feeling better for your trip. I think it is defintely true that the oncs are concerned with the cancer and nothin else. They pretty much told me that when I worried about future problems due to treatments they said we will cross that bridge when we get to it. I sort of see their point but if there's a way to prevent certain things from happening, why would you not try to do that. Sometimes I wonder if the docs have statistics like how long their patients live and they want to keep that looking good no matter the cost. Take it easy and rest up for your trip. I am pulling for you and I know many many others are too! Heidi
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Amazing about your numbers but so frustrating about your heart!!! That is just too low an EF to continue, you know it and I know it. Does your breathing sound like a wheeze? Like if you breathe out slowly you can hear a crackle like bits of phlegm breaking up? You might be getting too much fluid built up and I hope you move pretty quick if it gets worse! I'm worried about you and hope they give you enough "off treatment" time so you can get energy back for Europe. Funny that you felt better when your numbers were higher!!! Stupid f'in disease.
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Sleep in a recliner so you can be propped up, that might help some. Hugs!
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Good to have your update Marybe - my dh was on Coreg at some point and it knocked him for a loop at first but eventually things settled down - sounds like your cardio knows what he's doing. Take this time to rest and yes, nap, and I bet you'll be o.k. for your trip - if excess fluid is the problem when they solve that you'll feel much better (I retained fluid like crazy after the red devil and was given a diuretic - worked like a charm).
Glad you got to spend some time with your Dad.
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Marybe - Thanks for the update. I was hoping it could be all good numbers for you. Hoping that the coreg will settle things down. It is great that you get to spend lots of time with your dad - sounds like it is good for both of you. My dad comes to my house almost every day to play cards. Cribbage is the game of choice - we have a blast bantering back and forth! We usually play three games - I might win one. lol. I really enjoy the time with him.
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Marybe... Sounds like you are getting terrific care. Hope to hear that you are feeling better and stronger soon. As always, you are in my thoughts and prayers.
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Marybe,
I've been looking for you on the chemo thread but finally got smart and came here. Awesome news about the markers but crappy news about the EF. Remember .... there is always doxil. I'm betting they'll start you on that. I get it every 4 weeks and haven't had too bad a time with it .... other than fatigue. Haven't lost my hair and I think I've had 3 treatments. I'm usually most tired the end of the second week and then start to feel pretty good and try to do my socializing the last two weeks before treatment again. I also had fluid build up which caused breathing problems but it was the cancer causing it, not the chemo. Onc prescribed a diuretic and the relief came pretty quickly. When is your Europe trip? I'm sure they'll have you feeling better before you go!! Keeping you in my thoughts.0 -
Well crud. Not liking the sound of your cough/heart issues, not liking it at all. Very impressed with your TM#! Wow! Yours is lower than mine now!
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Hoping to get an update, sweetie!!! What are the docs saying???
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Just catching up after a few days but you're never far from my thoughts. ((Marybe))
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Marybe, do you know what you'll be doing next? Hope your heart issues get better.
Heck, we all know you have a good heart!
Leah
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