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Stephanie, I'm here just feeling for you. How many rounds of the triplet are they planing? Early on I did Carbo/Taxol/Avastin for six rounds. Have you done Avastin before? I was one of those rare people for whom it caused raging high blood pressure. Like all the antibiotics you've had to take, I took enough bp meds to seriously diminish my qol.

I'm at a loss for words Stephanie. Sitting here feeling so sad for you having to do a triplet. At least I don't think you'll lose your hair like I will on Taxol. I think you made the right choice. You'll get a little break from treatment at least. What can we do, what can we do to keep this beast from marching through out bodies! Will pm you about my last scan.

Judy in KW

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Hi Stephanie,

Words are so inadequate sometimes to bring some support and encouragement to one who is so deserving of such,this disease is so unfair.You are in my thoughts and prayers,that your treatments which start on the 10th of january,will be effective and without any significant side-effects.I am afraid my lack of experience and knowledge of these drugs is totally lacking,so I am unable to provide you with some further insight.I know everyone here, is in your camp rooting for you,coming out the other side hale and hearty.Best wishes.

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Stephanie - I just read through this post and am so absolutely overwhelmed. I am so sick of everyone I consider my family now having to go through this horrid disease. I have aches and pains but not the horrors that you will have and I would give anything to help you get through it - even if it means being sick as a dog to get healthy as a horse. I hope that all the prayers I can point your way will help. I hope you had a smile for new years if not the "cheer" - I hope you feel the hugs that everyone else and me are sending. Next year maybe we can all pop a top and ring in the new year -

Annette

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Thank you all.

Janet - yeah, I am frustrated - figured I would be able to ride Tarceva for 3 or 5 or more years like my trail blazers. But being off it for 6 days now, my finger tips are healed, my infected toe nails are just about normal, and my scalp is getting better! Eyelashes are still long.

Today is the B-12 shot and start of folic acid.

Hilariously, the clinic called to discuss my Jan. 6 biopsy. I told them someone else could have it, I had mine last month. Makes you all warm and fuzzy about their records.

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Hi Stephanie,

So sorry to read your post. It tears at my heart to read this. I really don't know what say to help you get through this, but I know you will be just fine and so many people on here will be with you every step of the way.

It’s amazing what the human body can endure and what we can endure when faced with these dilemmas when they unfold unexpectedly. One step forward 2 steps back, but it is what it is and we do everything we can to fight this monster and NOT let it win.

Your attitude plays such an important role when you go through this and yours is exceptional. Life has so many detours and we just have to take them until the path leads to the correct road. Hang in there and know how much we care and you are not going through this alone.

My heart to yours….

Maryanne

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  • 3 weeks later...

It's been 12 days since my first infusion. A mixed bag - some days feeling like this is a piece of cake, some days stuck on the couch and wondering why I am doing this. Swam 1/2 mile one day, been out to the movies and lunch, been in my pj's till 3 in the afternoon. Two or three pretty bad headaches, but a single (high dose) ibuprofen took care of them. My skin is recovering nicely from Tarceva, and so far, knock wood, no sign of a need for antibiotics since the last course ended.

This morning, kind of feel like a mac truck has hit - general not so good, lots of naps, visits to the loo. No fever. No rash. They said 10-12 days out from infusion is the low point for the cells, so maybe this is just to be expected? Not quite like the flu. I've got a dry cough, a couple of sores in my nostrils, getting winded easier than before. I keep in mind that these small things keep coming - and going. As long as they keep going away, I am doing okay. But it has been a downer day just as always when I don't feel well. Perhaps tomorrow I will wake with fresh energy and enthusiasm.

M's got dinner cooking, the cats are happy, and there was a gift in the mail. Not so bad?

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Stephanie, I'm there with you in spirit but wish I could make you a cup of tea and give you a hug. I think it's HUGE that you have been able to do the things you have since the infusion. You didn't mention naseau so I gather that's not an issue. Hard as it is, when you feel awful just lay back and let M cook for you. It's one thing we have in common, men who like to feed us. That's nourishing in more ways than one.

Have a better day today.

Judy in KW

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Wow, Stephanie, I just now got around to reading your entire thread (guess it's been off my radar for a while). It's pretty obvious 2011 hasn't been a fun year for you so far. Is the Avastin causing elevated blood pressure? If so, that could certainly be a cause of the headaches. It will also be interesting to see how your blood counts are doing. I can really feel a small change in my HGB, not so much with the white counts. I never had Avastin with Alimta (did with Taxol) and eventually had to discontinue the Carbo due to low blood counts, but they gradually recovered with Alimta alone. It's quite a balancing act trying to figure out how aggressive one can afford to be. Good luck and Aloha,

Ned

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I'm with Judy (KW) I wish I could fix us all a nice cup of hot tea and we could get cozy on the couch and have a good group hug - we'd all feel better - (I'll be in a bubble cause I don't want anyone getting my cold - but I could sure give and use a hug!)

Hoping and praying treatment woes are worth it!

Annette

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Stephanie I am so sorry to hear you are not feeling well from the treatments. Think positive it will be worth it in the end. If 10-12 day out is the low you should start feeling up within a couple of days. Will be happy to hear when you swim again. I will be thinking about you. Hugs. Hand in there.

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Stephanie, I'm so sorry the new treatment is making you feel so bad and there is one thing you mentioned that concerns me. I don't want to cause any unnecessary anxiety, but the dry cough and getting easily winded got my attention. If that part gets rapidly worse, please tell your doctor. My husband developed pneumonitis, inflammation of the lung when on Alimta and the treatment is large doses of prednisone. There are many people who have taken Alimta for long periods of time with no problems , but when I see someone have a hint of the symptoms that he suffered, I just want to make them aware of the possibllity. He had gradual shortness of breath and then a sudden onset of severe shortness of breath. A cat scan showed the pneumonitis.. this is a condition that is frequently caused by radiation , but is also listed as a side effect of Alimta. I don't want to be an alarmist, just didn't want to not share experiences either. I hope you just start to feel better and better and all these symptoms go away. Lots of prayers are going up for you.

Hugs,

Sue

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Thanks Sue - I have some other stuff that already makes me think I will be calling the doc tomorrow - I was already a bit alarmed with the cough and SOB - I've been asymptomatic other than side effects, so I was thinking symptoms rather than side effects. I guess side effects are better? I so want to stay off steroids - that would be a real kicker.

Today was a far better day, though I do need to check in with the doc tomorrow - or at least a nurse. But I have been active and pretty good today.

And thank you all for the tea and sympathy. My cup of chai runneth over.

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Stephanie, you should feel the love as we all hover round you. Do let us know what you find out when you call the doc. This symptom vs side-effect thing drives us all crazy. Guess only the pictures or trial and error approach to alleged side-effect can tell.

Judy in KW

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Stephanie -

I hate that you are struggling with feeling well, glad today is at least better. I was praying that your Tarceva crap would all clear up and you would have no problems with this new treatment and feel good for a change.

Although - I have to say, I couldn't swim 1/2 mile BEFORE cancer - so you go girl!

I hate also trying to decide if something is a side effect, symptom

or something totally not cancer related. I never know if I should call a doctor, and if so, which one! I am glad you are going to call the Doc, if nothing else it will relieve your worries.

So, cuddle up with you kitties, and a warm cup of chai and feel better - I am praying for you!

peace - Janet

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  • 2 weeks later...

Oh man - is it the carboplatin?

First cycle, 4 days out, I coughed so hard I threw up just a little, then on day 12, I was barely out of bed. There were okay and even decent days in between, though I think I passed another kidney stone and I had 4 mondo headaches.

Second cycle started last Monday - I've barely left the house. Tuesday night, no sleep. Thursday, gagged while brushing my teeth and kind of threw up again. A couple of hours later, tried to take my folic acid pill and half a glass of water later, everything came right back up - and there wasn't much there. Was able to eat some dry cracker and ginger tea later in the day, and dinner last night, but got another mondo headache. Slept pretty well last night and feel much better today, but wow.

Cough and SOB subsided, along with some intestinal issues. No high blood pressure, no rash. I hope that is just as well and not a sign of lack of efficacy of the alimta and avastin. Here's to a week of feeling a bit better, please?

Sorry if that was a bit too graphic for anyone - stirring up unfond memories perhaps?

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Stephanie, it breaks my heart to hear of you having such a rough time. Are you opposed to taking meds for naseau? I would really try Zofran if you can get a script. Otherwise, ginger and peppermint tea, ginger ale and for me, tea with some hearty bakery bread toasted helped the nausea. I'm glad the bp is o.k. but then what are the headaches from. This is just an idea but we learned the hard way that a slower infusion than the minimum alllowed was better for me. Your onc can write orders for say 5 hrs instead of 4 or whatever you are doing. I did carbo/taxol/avastin over 5 hrs.

I don't think a lack of side effects has a proven cause/effect relationship with efficacy of a given treatment. You still haven't said how many they plan on giving you--my guess is 4-6 depending on severity of side-effects. Here's hoping you get a respite between cycles. Are they every three wks?

I'm just wishing you to feel better.

Judy in KW

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