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Janet B update


Janet B

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So, I had my tests and followup last week.  Not the news I wanted to hear, but the news I somehow expected to hear.  There is more new growth.  Specifically - "slight increase in size of pulmonary nodule in right upper lobe, development of tiny miliary nodules in the right upper and middle lobes, development of osteolytic metasis in lower thoracic vertebra,  new  lesion in the T-11 vertebral, new subcentimeter  hypo densities in the spleen concerning for metastatic disease.".    In my mind, being the positive sort, I am very grateful the cancer left my brain alone this time!

I am writing from the lovely infusion chair.  This is the new plan.  I will continue on Tarceva daily and Avastin every three weeks.  We are adding Alimta and Carboplatin every three weeks.  Starting any minute.  If any of you have experience with this combo, please send along advice!

The good news/bad news is that none of my mets have ever been big enough for me to qualify for a study.  Nor are they big enough to biopsy and study. 

So, that's my latest.  I should be here in this chair for the next several hours and then downstairs to my much needed support group meeting!  

Hope and faith are always with me.  What good friends they are!!

Peace

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Janet:

Good to hear your positive spirit is this here with us! You have certainly been on my mind. I had 4 rounds of Carboplatin/Taxol infusions. But, have no experience with Alimta. For me the Carboplatin did start to cause neuropathy in my toes and fingers, so we stopped after 4 rounds. Less than one year later, that painful tingle is 99% gone. Every person responds differently to infusion chemo, so you will have to send all those positive thoughts you share with others to YOURSELF! You are definately in my thoughts and prayers and are my inspiration!

Susan

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Many positive thoughts and prayers for you Janet.

Not the best news but it sounds like a good game plan and a great attitude. You amaze and inspire me as I walk beside you in spirit.

Many many hugs,

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Janet - I've also had Carbo/Taxol - but no experience with Avastin. You have such a great outlook though and that is half the battle. As you said, hope and faith are the best friends any of us can have. I am keeping you in my prayers. Diane

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I am sorry to see your bad news Janet but happy for your positive mood. Don't let anyone take that away from you. It has been ten years and to tell you the truth I was never 100% sure that they were right but Johnny did have an insodent that happened while on the carbo. He was on his first treatment of the second 6 treatment round. The first few hours he was fine just tired. Suddenly he got really cold, his skin even felt icy. Within 10 minutes he was running a temperature of 104. I rushed him to the ER. His blood pressure dropped very low but a shot brought it back up. They ran all kinds of tests but found nothing. After a night in the hospital they sent him home telling us that they believed it was a reaction to the carboplatin. Sense his white blood cells stayed high throughout his treatment I have always believed he had some kind of fungus infection. So anyway that was the end of the carbo for him. The chemo nurse had us describe his symptoms and used that as a teaching tool to the others in chemo because no one there had ever seen a reaction to carbo. They just assumed that when it built up in his system he had a reaction.

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Janet:

I forgot to tell you to stay hydrated. Dehydration is a common reaction to the carboplatin. I ended up in the cancer center urgent care 2 days after my third infusion and they had to IV fill me up with fluids. They told me some patients come in after every infusion. Wish someone had told me that because I had it rough after infusion 1 and 2, but I am used to toughing things out and not asking for help. By round 3 of chemo I HAD to ask for help. My oncologists assistant told me my new job as a full time cancer patient was to drink fluids. For me she wanted me to drink two 32 oz bottles of Gatorade a day. I found the flavors I could tolerate and sipped on them all day. Seemed to help. Ask for help if you need it and hope all goes well! It always took about 36 hours to feel effects, so I always did what needed doing the day after infusion and then planned to rest, drink and recover.

Susan

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I just want to second what Susan said about hydration. It was a hard one for me to do, but it is really important as you probably already know. Just to show how differently we all react to chemo, I am driving an 85-yr-old woman who has been having Carbo for 5 months now and so far she's not had any problems at all -- not one.

Diane

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Thanks for the support guys! My doctor assures me that the Alimta/Carboplatin combo isn't as hard to deal with as other Carbo combos. I most likely will not lose my hair, I probably won't be very nauseous, But I will probably be very fatigued, and achy on day 4 and 5, as well as the concerns about my blood and anemia. Right now I am just trying to survive the 3 days of steroids. Steroids really affect me, I am jumpy, shaky and cannot sleep at all. hopefully they will wear off quickley.

I am very good about staying hydrated as the side effects of Tarceva are not as bad if you stay hydrated, so I almost constantly have a bottle of water in my hand, and drink a whole bottle in the night.

I am trying to keep my spirits up. Last year when I had the tumors in my brain I was terrified, We had just lost Ned to that in a matter of weeks. This time I am frightened for a different reason, we finally had to give in to chemo. I had avoided it for 5 1/2 years, kind of holding on to it as a last resort, and here it is.

But God is good, life is wonderful and there is always the beach and the farm to remind me to smile!

Your support, of course, is the best medicine!

Peace

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(((Janet))), sending cyber hugs and letting you know that you are in my thoughts and prayers. Sorry your scans showed areas of concern and possible mets, but it sounds like all are small. Hope the chemo treatment plan they have you scheduled for will do some serious kicking cancer butt. Hubby did Carbo taxol and did fine. Alimta is one he couldn't tolerate because it caused him to have pneumonitis, which presented itself as severe shortness of breath, but then again there are many patients who tolerate it very well. Everyone's body chemistry and state of health is different , so it seems no two people react the same to chemo drugs, but I think it really helps to get a heads up either way from those who have been given the same. My best to you.

Hugs,

Sue

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Sorry about this news, Janet, but I'm thinking that the fact that you have no tumors big enough to qualify for a trial is a good thing. Best wishes for great results with your chemo.

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