STEAM ROOM FOR ANGER
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Oh, Dianarose, I had no idea they cause pain like that. Edited to add the HUG. What tx are you on now that is wiping out your WBC? I should know from other forums but cannot remember.
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Bluebird- I have been on A/C for five weeks. Nasty stuff. Those neupogen shots are horrible. MO feels I'm stable enough now to start Xeloda on Monday. I Wil still be monitored weekly for awhile because when I go downhill it happens quickly
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Dianarose, have you tried taking Loratadine (Claratyne). I took one every day when I was having neupogen injections. I was having chemo on Friday, then 4 days of injections. The Loratadine made a huge difference, I went from barely able to walk from pain to no reaction at all.
Take care and best wishes.
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Freya- I have been taking Clairitin every day. The first shot was that bad but when I got another the next day it got bad.
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Well that's awful then, I can't think of anything else to suggest. Why the hell does everything have to have such shitty side effects.
I'm hoping that I finally get over this flu and can start my next and last chemo soon, things are progressing too quickly. If it doesn't work, out of options. The plan then is to have some nice holidays, make as many memories as possible with DH.
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Freya- what about Keytruda? My MO sent some tissue out to be tested to see if I qualify
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Dianarose, I will have to ask her again about Keytruda. I know we did discuss it a while ago, not sure if I remember correctly, but I thought it was for TNBC? I notice you are ER/PR + and HER2 - like me.
Thanks for the heads up
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Freya- I believe it has more to do with a muted gene.
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Rash - underskin hives all over chest and back, arms and neck. Even my butt.
Now I have to go off the new rxs and figure out what caused it. Our family does not handle any prescriptions or otc drugs, we just don't - our bodies hold onto everything and freak out on a tiny bit of anything. I should have seen it coming like a tidal wave.
Think it is the Prednisone increase which was from 5 to 10 but I only did 10 once, then 7.5 and 5 and now nada. But I had been taking the 5 only every other day. So it was a bog jump. I did take Benadryl cap last two nights and just now. I can't even take those without a frazzled feeling throughout my body. We are dressed and bag packed for an ER trip if needed.
Also wondering if the Xeloda is popping out. I am off it for 14 days now though. But the rash on my back seemed to begin when I was off it just 3 days. I didn't realize why my back itched until this got worse.
Am a mess. As usual. I want my blankie now.
Checking in on everyone. Going to watch Season 3 disc 1 of Downton Abbey. 4 hrs. Should distract and calm me.
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Love Downton Abbey!
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Lita! : ) Season 3 is so good too. The characters never lose colour. The plot is just waiting around the corner for their lives to take another turn.
Another series I highly recommend for laughing and interesting characters is Brothers and Sisters. Absolutely riveting.
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Bluebird, how are the hives? Hope things are settling down and you are feeling better. Hugs to you Lita.
Jumpship, I'm cynical, but there are times when you feel like you are one of the token friends.
gay friend - tick
celebrity friend - tick
dying friend - tick
My rant for the day. I can't get well enough to start new treatment, without new treatment health is going downhill.
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Oh, Freya!!!!! That's one of the things WE ALL WORRY about. At some point on this little adventure, that will indeed happen to all of us.
I wish I had more comforting words to say, but we're all dealing with our own "shiz" storms these days.
Is there anything they can do to help your levels so you can start up again?
Oh, love your "tick" system.
Off to the opera and then dinner. This may be one of LAST "normal" things I get to do in a while. Taxol starting soon....
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Hey Lita, have a lovely night! Thanks for the kind words.
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Any ideas for stopping my wedding and engagement rings from sliding off my finger? I'm worried about losing them, but don't want to resize them in case my hands swell in the future. Lost too much damn weight!
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went to my son in laws to give him a nice desk clock with pens plus we had it engraved. His stuck up wife went upstairs until we left. Would like to slap her sometimes. We have done everything for them. My Christmas list is getting shorter
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Frey- you can get ring guards at Walmart too
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Dianarose, my Christmas list is short these days too LOL. The best part is, I don't care. Once it was about keeping the peace, letting things go etc. Now, it's a case of, be gone with you, out of my sight, out of my life. My life is so much more peaceful and stress free.
Thanks BB and DR, I've never heard of a ring guard, I shall go looking.
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Jumpship - tick, hahaha. Yes, I get the BFF part - but I unfortunately do not have any friends that are really there for me. Hubby. My sister. It is nice you have the real sisters who have proven strong and loyal and love you. I am so happy for you and anyone that has this. I have Hubby. Sister cannot do anything really, so far we get the rare visits. I did have friends but my one has CHF and is into her 70s so we talk on the phone ad do breakie sometimes, or a drive. But since I cannot drive now, we are waiting to go again. And the other disappeared sort of, totally against chemo - only natural healing. So that was a fall out without the words being said. But I do have a sister in law who goes on FB and does the oh everyone please pray for my SIL who has this and that and acts like that is good. I told her to not but she cannot seem to help herself - huge laugh! So I just love her anyway.
Freya - this is my worst day yet. Some coffee set it all off this morning, heart palps, tongue feeling furry and shaky inside. Had an itch inside ear and vagina and though boy this is it. We can meet the ambulance at 3 miles out, so not too worried. But would rather drive to the hospital on our own, taking ambulance center routes along the way just in case. Was all set for an ER run. Managed to get the grip needed to avoid it so far today, but not ruling it out. Am not taking anything for now, nothing - no way, waiting for it to pass. Benadryl made me worse yesterday, same as today. Called my pharmacist, he went through the list w fine comb and couldn't find a contraindication or inert ingredient, he's great. These itch attacks on my back then underskin hives started before I started any new RXs too, so it's likely the extra prednisone for lupus --- which is what they give for this problem anyway. FRANKLY, I am afraid to go to ER, they could just kill me off w more of the same because they think they know best and won't listen. I have MTHFR gene mutation (characteristic, not like we are mutants) and cannot take even the nitrous oxide at dentist, bro and sis too, that about killed sis and I had these feelings and went out awhile. I took a little extra thyroid in case I need a boost for heart and system (endo doctor suggested when tired or jittery in afternoon) and ate protein and watermelon. And I feel more centered than have since the caffeine twist. And that's my story and I'm guessing you are sorry you asked. Baahaahaa.
It's good to laugh, I cannot do so in body since the cough reflex, but I laugh inside and like now.
Dianarose - you are riding a new wave, it too shall pass because it has to. I drink Ojibwa tea and like to believe it helps my blood stay stronger. Though the Femara Ibrance about wiped out my system, but I hadn't been drinking it then so I don't know. It's a thought. ojibwatea.com I make mine from her powdered form so it is freshest. And use the Ojibwa salve on my feet and hands.
Lita - so nice for you to go out to the opera. Thinking of you as always.
Bosumblues, how is it going?
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Freya- even my maid of honor is off the list. Haven't heard from her in over ten months. Sometimes I think people think we are contagious. I have my dear hubby, my kids and three brothers and one friend that had been here for me. It's ok now. I'm over it. None of my step kids like me because the money train from daddy has stopped. When I was on my death bed I had one request and that was to put my youngest son who was 17 on the deed to the house. I bought the house when my son was 7 and it was just him and I for years. All the other kids have houses. I feel better knowing they can't take it from him.
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Taxol #11 kicked my butt and sent me to the Emergency room with a fever. They never figured out what was going on. They gave me fluids at my next appt and held my last Taxol. Next week I'm there I think I'm just getting Herceptin, nope they give me the last Taxol too. So for about a month now I've been feeling pretty awful. I haven't been to the gym since, which is an awful mind game for me.
Now here is the BEST part.... this past week I've been feeling especially cruddy....well yay me, I now have c diff!
Ok cancer, I wave the white flag, this is just fricking ridiculous
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Jrow- sorry about the c diff. I heard it awful
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Jrow, I had to google c diff, had never heard of it. Does not sound like fun, you poor thing. You are now finished Taxol, so that's a good thing. Hopefully things start to improve for you now.
Dianarose, I get the feeling that I'm just taking way too long to die for some people! I don't know if they realise they are doing it, but it is how it comes across. Someone did tell me they had googled and the average life expectancy for MBC was about 2 years, and yet I am still here. I didn't look sick, did I really have MBC LOL. Some people just need a punch in the face!
Bluebird, you really are going through the wars. It must be nerve wrecking having to watch every drug because of your bodies reaction. Can you bathe in something to help with the itch? Oatmeal?, bi carb?, trying to think of anything else that might help. I used oatmeal (wrapped in muslin and thrown in the bath) to help with an itch from a reaction to Xeloda.
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- Freya- when people piss me off it gives me strength. I don't care what anyone thinks anymore.
My Surgeon thinks I have been stage IV for 6-7 years . Take that statistics !!
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Jrow- I was tested for c diff a couple of months ago. Hubby and I had diarrhea that was horrible and not going away. It ended up that our well was full of bacteria . Our well is almost 500 feet deep but was told because we had a lot of rain this summer the ground water will get in the well. I was told c diff is highly contagious.
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That's my steam room rant too. They do not listen or think or are always doing it wrong. Like the head on collision - I told them only Ibuprophen, only only that. No other pain med. The nurse comes to me after 6 hrs w a little white pill in a little plastic cup. Soooooooooo, I ask - what is that? "Tramadol." NNNNNNNNNooooooooooooooooooooooooooooooo. Only ibuprophen. And that's all for now, but the list is long. And why I don't wanna go to the ER.
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I took a nice rinse last night for the skin, it helped. The heart and anxiety is what gets me the last two days. But I have tracked this mess back to the RX of Spiriva Respimat for the cough / cancer cough / copd generic label on that which has a decongestant called phenyleprine and the other I am knowinglt allergic to and told the pulmonologist. dextromethorphan. Neither of these are ON the box. And one is not suggested to take the Spiriva with the antipsychotic MAOI chlorpromazine which was prescribed to me by SAME DOC for the cough reflex which there was hopes it could stop. I cough endlessly, bronchospasm on everything.
So basically I have researched my heart out for an hour +++ and decided he could have killed me if the rash had not popped out and slowed me down. I only took the chloro one 3x from Friday twice to once Saturday then QUIT, too afeared was I. But the Spiriva Respimat I used Thurs night, then each morn including today. The rash goes back to the prednisone increase last weekend and Tuesday. So 2 issues I think. I am done. I cannot do this. I need one doctor who will be careful not to kill me, right?!
But think I am out of the woods as long as I don't take anything for a few days.
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Bluebird this is the method I use for my children's coughs. It works about 4 hours. Maybe it can help you. I hate coughing,allergic reactions and itches.
http://www.robinraygreen.com/7-ways-to-calm-a-coug...
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Bluebird, can you take codeine? It is the only thing I have found to help me suppress coughing.
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The cough has been my whole life but mild, like when I ran or laughed. Two years ago it started to build. Then found out the cancer was all through bronchials and throat. So that's why. Pulmonologist I had tried to help - it has been said by 3 dr it is a lupus cough, perhaps scleroderma. I cannot take codeine, too sensitive and it doesn't work anyway. No cough meds help. I often get going and so drink hot lemon water, it helps w the throat. I use a eucalyptus cough drop dissolved in water w a spit of brandy to keep it from spoiling. I spray my throat when the "tickle or stick" feeling gets me. Can't have a cough drop, it will choke me to death. COUGH DEEP:::: It's a dry cough, no phlegm. Except saliva doesn't go down the right way most of the time. But the cough itself is deep and horrible, esophagus seems to reverberate like a thunder storm, triggered by talking, laughing, moving arm, typing, writing, using arm to move the blanket, all that. I do use essential oils for breathing better.
ZILLS - Thank you for the link. I will try the ear acupressure. With right lung ground glass and the cough, the spots could work.
Now for the life of me cannot find where I found that the new Spiriva Respimat inhaler has phenyleprine and dextromethorphan. But have found where the Spiriva is not to be prescribed with any MAOIs (chlorpromazine is one). AND don't give that to people w lupus which I am one of those people.
I am thinking it is a lupus rash all over my body. But don't know. No Xeloda until cause known and I'm fixed. That makes me anxious. I was to continue after a 2 week vacation, start up on Wednesday.
Feel self centered - am using this for my notes, but did make a spreadsheet. My DNP is seeing me in 2 hrs. Lupus panel if a flare.
Hope all are well, sorry for the mememememe lately, really. I'll do better.
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Bluebird....you write about memememememememe as much as YOU want!
We are hear to support you, dear one. You're going thru the damn wringer for sure! I've been praying for renewed strength, positive solutions, and healing for you.
This damn disease!
L
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