Anyone starting chemo August 2016?
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How true it is. Thank you for posting it Dara. I've never felt so alone in my life. Marlene
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Thanks, Sensitivehrt. :-)
Another question... One week after my first AC treatment, my check up yesterday disclosed that my neutrophils had dropped from normal to .5. I was given masks to wear when out and cautioned on dietary changes...no raw veggies or fruit that can't be peeled, lightly cooked eggs, etc. I was also given a levaquin Rx.
For those of you who became neutropenic, were you able to continue your treatments without delays or dose adjustments? My Neulasta pod seemed to work perfectly and other than being tired and a little dizzy, I haven't felt too bad so the news caught me by surprise. I know it's not uncommon, but I thought of it as something that might occur later in the process after multiple infusions.
Lyn
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If you have started to experience neuropathy, when did it occur? Just had my 7th infusion last week and my right ring and pinky have felt numb, my toes have started to feel heavy, but not tingly. Told the doctor right away. He said that they would give me one more infusion, and then start on the mix of drugs. So scared.
All my infusions have been ok, no nausea. I made the mistake of eating something acidic right before my last infusion and got sick after they gave me the pepsid and steroid. My temperature rose, they got scared, I still don't know what all happened, I just know I was there for 4 hours. They must of had to wait till my temp went down, then restarted again. My poor daughter got frightened when I didn't call her for pick up at a reasonable time. So, don't eat like I did, learned my lesson.
Something else I have learned from this experience: If you are diabetic, as I am, your sugar will rise. When your sugar rises, watch out for UTI's, try to keep your sugar under control. Make sure they give you the drug your UTI is most sensitive to first, if you get one. I went two weeks on two different antibiotics then got a yeast infection. That kind of experience will really get your depressed. Watch for the neuropathy, I think most people will get some form of it. You are going to get tired, eventually, as you go through this. I was doing pretty good until recently. Get some sleep, as much as you can. Do lots of things that make you happy and God bless us all!
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If you have started to experience neuropathy, when did it occur? Just had my 5h infusion last week and my right ring and pinky have felt numb, my toes have started to feel heavy, but not tingly. Told the doctor right away. He said that they would give me one more infusion, and then start on the mix of drugs. So scared.
All my infusions have been ok, no nausea. I made the mistake of eating something acidic right before my last infusion and got sick after they gave me the pepsid and steroid. My temperature rose, they got scared, I still don't know what all happened, I just know I was there for 4 hours. They must of had to wait till my temp went down, then restarted again. My poor daughter got frightened when I didn't call her for pick up at a reasonable time. So, don't eat like I did, learned my lesson.
Something else I have learned from this experience: If you are diabetic, as I am, your sugar will rise. When your sugar rises, watch out for UTI's, try to keep your sugar under control. Make sure they give you 8th drug your UTI is most sensitive to first, if you get one. I went two weeks on two different antibiotics then got a yeast infection. That kind of experience will really get your depressed. Watch for the neuropathy, I think most people will get some form of it. You are going to get tired, eventually, as you go through this. I was doing pretty good until recently. Get some sleep, as much as you can. Do lots of things that make you happy and God bless us all!
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SweetRain, you're right about the diabetes. I haven't been on meds for it for several years now, but after the steroids with each infusion, my sugars skyrocketed. Twice, the day of tx, they reached over 400! I took some Metformin and started riding my recumbent bike to bring them under 400! Crazy. So sorry about your neuropathy. I'd get sharp stinging sensations in bottom of my feet, but they didn't last but a few seconds, so my MO didn't worry about them. I think plenty of water is critical after the drugs. That really helped with my sugars also.
Lyn, I ck'd my results on my blood work, and my neutrophil were actually high 90%+, it was my lymphocytes that was low. Did you get the Neulasta after your infusion?
Marlene, people actually responded very positively to my FB post. I just really wanted people to realize that behind every pink ribbon is a real person. I sometimes feel like I'm invisible or don't really exist. I know it's not intentional, and I actually do appreciate all the awareness in October, but I worry that it's so commercialized that people get caught up with the hoopla and then don't want to see the real part.
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Yes, Dara, the Neulasta pod seemed to work perfectly. The MO mentioned that she's never had a problem with insurance companies fighting about Neulasta because the people who end up neutropenic WITH it would likely be in the hospital WITHOUT it and that costs them a whole lot more.
I had a spinal injection the day before my first chemo and my blood sugar went from 158 to over 400. YIKES!
Lyn
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Dara .... So well written ... I so agree with all you say. It has become like a Hallmark card moment. I went to a BC fund raiser ... I was tired & queasy as people we celebrating BC awareness all of them acting like it was carnival in their pink wigs ..none of them had ever experienced BC but they were the ones on camera for the local news. I never felt so isolated... Which is what we are as we sit home hoping to heal between infusions. I too appreciate all the efforts to knock out BC but we are still in the moment.
That being said I have been sick with a sore feels like swollen throat. My MO thinks I have sores down my throat so ordered some of that terrible medicine to use and I was told it will probably make me throw up its so nasty ... It has lidocaine in it and other things that sound gross. I just know I feel like poop and can't eat anything ...but do you think I lost a pound ...nope not an ounce.
Elizabeth ...hope today went well.
Wendy.... Welcome we are pretty special.
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Dara- you were my "guest entry" on my caring bridge website. I realized if I teared up both times I read it, I needed to post it. I got some texts right away (I told them I don't like calls haha), and some positive comments. No matter what, I want folks to "think"...I've been trying to educate my friends/family/whomever reads it about more than just what's happening with me. So thank you!! Its funny, I have a friend who has ALS, and as you know that is a death sentence....diagnosed in her 40's, 5 kids and a husband and they're all just amazing. I'm going to try and do the ALS walk down here in Southern Calif, and will post something on MY site regarding it as I feel so many folks did the "ice bucket challenge", but do they really know the horrors of that disease- most likely not.
Cali- I have some of the same issues and got some Magic Mouthwash a couple of weeks ago. I tried it a few times. The taste itself was ok, but it's the consistency of mine that's nasty! thick and chunky is all I can say. She said I can swish and spit or for heartburn and throat issues to swallow. But my side effects are easy to deal with right now so I'm passing lol. I loved what you said "we are pretty special"!!
Marlene- I wish we weren't across the country from each other! I'm so frustrated with your situation. It's bad enough to go through this crap, but then to watch how others react is ridiculous. My cousin who successfully beat BC 9 years ago at the age of 47 told me when this hit me- "you'll find out who your real friends are". Please continue to talk to us!
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Lyn -- This is a problem that I had during my AC treatments too. As long as you are not running a fever, your counts should go up. Mine would go down the Friday after my session, that was day 7. Only one time did I fail the Blood test on the Wednesday before the Session and had to take another test on the day of the session. That time I passed and was able to proceed with the treatment. Treatment # 4, which was my last, the doctor lowered the dosage in the hopes that I would not have that problem. If you start running a fever over 100 F, get to the hospital...
Cali -- So sorry to hear about your throat. I sure hope it clears up in a hurry.
The session went well. I was given steroids to take 12 hours before treatment and the same for 6 hours before treatment (5 pills each). At the clinic I was given Benadryl and Zantac, then a 30 min. Saline drip was started as a timer. After the Taxol was started and it was a 3 hour treatment, followed by a 10 min saline flush of my port. the final step was a flush the port with heparin. I was good to go. My BFF Luann, picked me up and drove me to her house where I had left my car. I went grocery shopping and then went home and slept for about 2 hours.
Next time my session will be 5 and 1/2 hours. They are adding the Herceptin with the Taxol. I have to be observer for 1 hour after I receive the Herceptin.
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GracieFoundation, I'm very sorry for your loss. Thank you for sharing the link.
Lyn
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Thanks DaraB, My sugar went up to 433, I about had a heart attack about that. I had been trying to get sliding insulin for 3 or 4 weeks, but the nurse said that I had to keep a record of the readings for a few days so she could get a picture of how my numbers were. Then a day or so later they started to run in the 300's, fortunately I saw my surgeon that day and casually mentioned that. Well, he was shocked and took my sugar reading right away which was 390. He call my hospital (internal medicine) and insisted I see a doctor right away and set up an appointment. Saw the doctor and she increased my metformin to 1000 in the am and 500 at night. She prescribed the insulin, but said to wait till I saw the nurse three days later so the nurse could instruct me on how to use it. Trying to get the insulin has been kind of a nightmare. I share the blame with my doctors as I was not keeping consistent records. I go see her tomorrow. Thank you for the tip about water. I will start drinking more water. I'm so hooked on Diet Pepsi, it is hard to drink water, so tasteless, but I WILL DO IT!
Regarding my neuropathy, my doctor told me today that this would be the last taxol infusion. He said that the symptoms would persist for a month and slowly ease off. I was like, "Wait a minute, it is going to get worse for a month, " and he reluctantly said, "Yes." YIKES! He also said that neuropathy caught early, like now, should be reversible. WHEW!
So, he said that they would give me an ultra sound of my heart. Three weeks later I would be put on the next and last set of drugs. I would get them once every two weeks for 4 times, after that, I would get radiation and later a pill taken at home. There is an end! Yay! God bless us all!
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OMG Lynn, such a high sugar number! I hope you were able to bring the number down. God bless you!
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Thank you so much for your kindness. I recently decided that my hair was just looking too thin to really continue having it and so went to a salon to have it shaved off and my wig trimmed to a style liked. The stylist said that she would not be able to trim my wig as if a mistake was made, it would be too much to replace the price of the wig. While I was disappointed, I made myself not cry and pushed forward with the hair cut. It was traumatic, but I laughed. I looked like Mr. Clean. She said that the hair cut would not cost anything. I was so happy. It is so hard not to cry when people around you are being so nice. She told me of a wig place close by that did cut wigs. I got in my car and told myself it was ok to cry now and get it over with. I drove around and found Ann's Wigs. I went into the back door and met a man, not a woman, who owed the place. He was over 70 years old and originally from South Korea. He had lived in America for over 40 years. He was so nice and said that the trim of the wig would cost $10. I was a little afraid that it would be much more. I put my wig on and he sat me down and started to trim it. We started talking and discovered we went to the same church and began talking about that. He was so very nice and we both enjoyed our conversation. My wig looked like everything I wanted. I was so incredibly happy. As I stood up, he said that I didn't owe him anything. We went to the same church and he was happy to do it. I left there feeling so very blessed. When I got home, my husband said my wig looked GREAT! I looked so nice.
It is so wonderful to find so many out there that want to help. Thank you for Gracie Foundation and all that you do to help us, it is appreciated. God bless you!
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Hi ladies. Hope you all are doing well. I had lunch with a friend today and had a quick question for you ladies that are diabetic. Do you still do your finger pokes in the finger? My friend works as a nurse and said she recently had a patient that wanted an A1C done, but refused to have her finger poked because of BMX/node removal. As a nurse, my friend is completely aware of no blood pressures/blood draws in effected sides, but this one was new for her. Anyone have any input?
Thanks
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Morning! I think I am going to make it ... Starting to come out of the fog. The swelling is going down in my throat. The Magic mouthwash never got put together. Apparently the person who does the compounding was out sick so it never was put together. Any who I now have a cough & cold ... I am so careful but I guess germs are everywhere. So this I can deal with.
Graciefound..thank you for letting us know about your site & lovely sister. So sorry for your loss. 💕
SweetRain...why are they doing an ultra sound on your heart? I agree "yay"for there being an end in site.
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Sensitive... OMG, I never even thought of that! I check my sugars often and have been using my left finger for the pokes. Especially while on the steroids with infusions, I was checking frequently. My sugars went to 422 also, so I had to monitor closely. I'm very careful about the BP and blood draws also, even wear a medical alert bracelet just to be safe. I'll have to ask about the sugar checks.
SweetRain, what a wonderful story. And I'm going to have to take my wigs in to have them trimmed. I had it done originally when I bought the wig, but still am not happy with the results. So I just keep buying new wigs! I haven't spent thousands on them, but the first 2 were $400+ . I just bought two less expensive ones online so maybe I'll just try my hairdresser. I find that now that I've finished chemo, I want to have hair again or at least feel a little more normal. Since it will be at least a year before my hair rows in enough, I know I need to feel comfortable in a wig.
Hope others getting tx this week are doing OK. this second week post-chemo has been up and down. Good one day and then yuck the next. Yesterday I was nauseous all day long. Finally kept a little chicken noodle soup down last night. Eyes still twitching like crazy so sure hope that goes away.
Cali, how's your throat doing? I so hope it's getting better. Can you at least get down a malt or shake? I found with my mouth issues I did better with cold, even if I couldn't taste it. I had a couple of people make homemade soup for me, and I found it was so delicious when eaten ice cold!
Elizabeth, hope your SEs were minimal after your tx and you don't end up in ER again! My infusions were always about 4 1/2 hours, then tack on my blood draw and dr visit, and I spent the whole day there! Such fun. Take care
Hi to everyone else, hope you're having a good day.
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GracieFoundation- what a wonderful foundation, and I am so sorry for your loss. Your sister was beautiful and it's just so heartbreaking to see this disease do this to so many families. Thank you for your post!
Cali- some of us have gotten throat issues including a cough from the chemo- I'm hoping this is just a side effect for you and not something else your body may be fighting.
Awesome story SweetRain! Marlene and Elizabeth- how are you doing?
I have chemo #4 next week...always start feeling fairly "normal" and then I realize that'll change soon. My side effects seem to shift. After the 2ish week mark I have more of the heartburn and eye issues. Dara- I try to have at least a vitamin water a day for the electrolytes to help with the eye twitch. It does seem to cut it down for me. My eyes are watering a ton. Something I have to watch- the NP told me yesterday that there's a rare chance the eye ducts clog from the chemo (I think that's what she said). I'd have to go to the eye dr if that's the case. Fingers crossed no.
I had an ultrasound on Monday. I think I pushed the whole memory that there are "multiple masses" out of my brain until I saw the results from the ultrasound that listed 4 different masses. Ugh- 4....really- I grew 4 cancer masses in less than a year. Nice. But the NP said they don't worry about the number of them. Ok. Good news is 3 out of 4 are responding to the chemo. The one with the tissue marker has stayed the same size. Other 3 have mostly shrunk in 1/2. So the Oncologist office is very happy and I still have 3 more treatments to go before surgery. Fingers crossed.
Hugs to you all.....off to the plastic surgeon for a consult!
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Watery twitchy eyes have been bothering me too. My doctor suggested Claritin and it seemed to help. I forgot to take it this morning before I left for work though, so my left eye has been tearing up all day. I've never had allergies, but seems like the chemo is just bringing them out in me.
I go for my last chemo next Thursday. Right now, I am feeling pretty good. I don't want to think about the day of chemo and the week after right now. I just want to enjoy feeling good. I'm almost to the other side though. Next chemo is my last, so 3 weeks from now when I start to feel better, it will be for good!
I've been having a lot of trouble with my PICC line. I've been in 3 times this week to get it flushed and dressings changed. My skin is so broken an blistered from the adhesive that covers it that it is getting weepy inside the dressing. Need to keep it dry to avoid any infection. Hope I can manage to keep it in for 1 more week. I will be so glad to have it out next week!!!
Despite feeling pretty good, I get so tired so quickly. I wonder how long that will take to get over. My counts continue to be low (WBC and Neutrophils) for a good 2 weeks after chemo even with the Neulasta. I read on one of these boards that those who have extended low Neutrophils on Neulasta would likely be hospitalized without it, so I guess I am fortunate to be avoiding that! Seems like my RBC has been dropping with each treatment though. Could be the culprit to my fatigue. I've been anemic on and off my whole life, this feels pretty much the same.
I had a birthday this week. My kids wrote me amazing messages in their cards to me. My son made us all dinner (he's 16). My husband scheduled me for a massage. My daughter made me a small artificial rose bouquet and vase (so pretty! It is setting in the middle of our dining table). It was a good day!! We have a running joke in our family. About 10 years ago when my son was 6, it was my birthday and he said "Aren't you so glad to be turning 36?!" He truly meant it and it was so cute. So every year I get asked the question. This year when they asked aren't you so glad to be turning 46?, I truly am. Looking forward to a much better and healthier year than the last!
Happy weekend everyone! Hope you all feel well and enjoy the cool fall weather.
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Glad you had a wonderful birthday. Best wishes for many more healthier ones. Congrats on almost finishing chemo. I am finished although I couldn't complete it. Taxol did me in and onco stopped it after my second treatment with it. I did have 4 AC treatments but three were at reduced dosages. I start radiation on Nov. 2nd. Take care and feel better.
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So glad you are responding to the chemo. Will say my prayers for you. I'm hanging in there. So scared because I had to stop chemo early. Only had 6 out of 8 treatments. We went out for dinner last night for the first time since being diagnosed end of April, and midway through I got so dizzy that we had to leave. I hit the bed as soon as we got home and finally fell asleep for several hours. Tried to do some walking today. Walked a mile with hubby this morning but he had to hang on to me. Getting so tired of this, Take care
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I was told by a lymphadema specialist that even when I check my blood sugar it should be done on the opposite hand of where I had surgery. I was also told no cutting of cuticles and no professional manicures. Take care.
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I was pulled off taxol after the second infusion because I developed neuropathy. Onco said the risk wasn't worth the reward. I did manage to get through 4 AC treatments. I start radiation Nov. 2nd. Going to be a long 7 weeks driving 3 to 4 hours a day to have the radiation and some appointments are as late as 9 pm because I am having proton and they have only two machines.
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Thanks so much for your support Kelly. Yes, breast cancer is lonely. Marlene
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I agree Dara. People are afraid of me and afraid to see what breast cancer can do.
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My neuropathy began after the first taxol infusion. Got worse after the second, and the doctor stopped chemo so I never had the third and the fourth. He said the risk wasn't worth the reward.
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Marlene- I know we are all different, and a lot of us are on this board as a support group isn't for us, near us, etc. I don't know if there's one near you, but with your friends not giving you support right now it might be nice to actually be with women who understand what you're dealing with and you get some face time! I know we all need it! I think what's helping keep me in the loop around here is having a 13 year old. It forces me out and doing things when I can. Just a thought...I hate that you're going through this without the support you so deserve.
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Hello everyone!
I didn't realize that I hadn't posted in so long. It has been a busy and sometimes difficult week, but I am pulling through.
Sounds like you had a nice birthday, Kelly!
Marlene, Good luck with radiation. I'm sorry about your struggles with taxol.
Dara - thank you for sharing your pink ribbon post! It can be difficult to be the person behind the ribbon, that is for sure.
Kelly - I am happy to hear that the tumors are responding to chemo!
Sweetrain - I like your sweet wig trimming story. Thanks for sharing
Elizabeth - I am glad you are well enough to start treatment again, although 5 1/2 hours sounds brutal!
Sensitiveheart - I can relate to needing some space sometimes!
To all the rest of you - keep trucking on! So many of you are in the homestretch and that makes me very happy!
Baby girl is doing really great. She is growing right on schedule. She had an echocardiogram yesterday and her heart seems perfect (I did AC while pregnant). She also seems to have a full head of hair. I'll need to dust of a comb to bring to the hospital! Haha.
It has been nice to have a chemo break the last few weeks and I am not looking forward to started 3 months of taxol the week after she is born. But, oh well. We do what we have to do!
All my love, ldaies!
Annie
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Kechla, first, Happy Birthday!!! And thanks for the information. I just had never thought about the finger pricks. I'll switch to the other finger, but it sure will be awkward! Thanks also for the Claritin suggestion with the eyes. Mine start twitching so badly that at times I can barely see.
Annie, so glad to hear all is going well. Can't wait to see a picture of that little girl! Not too much longer right?
Kelly, so glad the tumors are shrinking. I know it's hard to see the numerous tumors, but just keep remembering that they are shrinking and you're still heading in that direction! Hang in there.
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Anyone have any ideas.... Yesterday every joint started to hurt. I took some Tylenol 3, but was still up most of the night.
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Is the joint pain from the Taxol? If so, my onco's nurse practioner told me to take 600 mg. of motrin every 8 hours for several days in a row after an infusion. I asked her about Tylenol since because of chemo my tummy is always upset, but she said Tylenol wouldn't help. hmmm. Hope you feel better. It's been 3 1/2 weeks since my last Tylenol infusion and my hips are so sore. I spent 50 minutes on a stationary bicycle this morning to try to loosen them up. Hope you feel better soon.
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