Dis Breast Cancer Survivors Part II -GAGWTA!

[snappy]

~~~***GAGWTA sistas***~~~

Dawn- I'm sorry to read about your reaction, it's so scary! Thankfully it was resolved quickly. I don't blame you for not wanting to try it again! FWIW I would probably choose the same cocktail. I have a very strong family history of early age (30's & 40's) fatal heart disease, so I understand your concerns about Adriamycin. Is Eprirubicin an option? It was only available in Europe when I did chemo, but I have read about people getting it in the states now. It is like Adriamycin, except it doesn't carry the same heart toxcity. My onc did a Muga scan prior to chemo and my heart function was and remains fine nearly 10yrs after doing A. I did have a port for chemo because I was already a very difficult stick and it made my life so much easier. I understand you don't want it, and since you don't have that many rounds to go, hopefully they can get it done without needing a port. I did Adriamycin and Cytoxan together and then Taxol separately. I was very sick on A/C, but new anti-nausea drugs have come out since then, Emend comes to mind. Regardless, I got through it and you will too. When do you take your steroids? This time, I was told to take all of my dosage in the morning. I still wake up at 4:00 a.m., but at least I can fall asleep. I actually opted out of steroids at the end of chemo, they drove me crazy. I asked my onc about it and she said it's supposed to help, but if the side effects outweighed the benefits I could stop.

I got my Humira yesterday! We took a short walk as I was waiting for my injection to warm to room temp. My kids were bumming because I had to give myself a shot and I stopped them and told them how grateful I am that there are shots and pills and things that will make me well. Chemo side effects suck! It was the hardest thing I have ever had to do, and this is nothing compared to that. But I am alive! I am so grateful. I will not complain! Bring on the drugs!

I did not have to do chemo and I hope I never have to.

However, in case I ever do, I am going to print off your post above, Laura.
You have a great take on this that I don't want to forget.

Linda, thanks for explaining the impact of Adriamycin on congestive hear failure. I have always heard that there is a risk to the heart from certain chemo drugs but never understood the details.

Knowledge is power. Thanks for giving us power, Linda.

 

[Disney lovin' senior]

Sorry not to get back to you sooner. I completely understand how uneasy this makes you feel. No, if you have your chemo is your veins instead of a port, as we both did, your veins become 'tough' is how it was told to me. They almost disappear, and they can no longer use it for blood tests or any other iv's. They just can't find a good vein in that arm. I never had any pain of discomfort - they can draw blood out of your hand, as those veins are not used for chemo. They just use a smaller needle, usually what they use for children, as those veins are so much smaller. Inconvenient, and a bit more tender area, but again, the price is something I'd pay again. It's all so stressful, I know. I went for my yearly checkup, and passed the chemo room. I just hate to see people go thru it, and I'm sorry you do. But think of it this way - you're at least 25% thru chemo! Get lots of rest, and hold you head up!!! You're a survivor!

 

[Pea-n-Me]

I only use my left arm now (as I do have chronic, mild lymphedema in my right arm) and they never have trouble drawing blood or placing IVs (I had one for antibiotics a few weeks ago). The veins do develop a little scar tissue from being stuck so often, but it's not usually something that can't be overcome, as there are plenty of veins in the arm, really.

FWIW, in the hospital, we never use an arm on an "affected side" for anything, including IVs, blood draws, or even BP checks. Your post here is the first I've heard of it, Dls. Maybe it's a new trend?? We're always learning something here, aren't we?

 

[laurabelle]

I did not have to do chemo and I hope I never have to.

However, in case I ever do, I am going to print off your post above, Laura.
You have a great take on this that I don't want to forget.

Linda, thanks for explaining the impact of Adriamycin on congestive hear failure. I have always heard that there is a risk to the heart from certain chemo drugs but never understood the details.

Knowledge is power. Thanks for giving us power, Linda.

Laurie- I'm inspired by my angel sistas who desperately wanted another drug to take, but there wasn't one...

Linda- Yes, thanks for the link. I know a young woman in my group who has CHF from Herceptin.

 

[Disney lovin' senior]

I got the okay to use the 'other' arm from my oncologist. 2 years ago I had a botched gall bladder surgery, got nicked, had to rush back to hospital, developed pneumonia, and was critical. They had such a hard time finding a vein, even had i.v.'s in my neck, and blood draws out of my ankle. Kind of unpleasant even tho I had 105 temp and hallucinated for a week. (Ick.) When I discussed this with my oncologist, he said use the other arm- if I had trouble, they would not allow it, but I only had slight swelling years ago, and nothing since. I have a few other health issues (not related to my breast cancer) and need a place for them to put i.v.'s or do draws. We do what we have to to stay on this good earth, right? Unless heaven is just like WDW, I'm sticking around.

 

[snappy]

Good point, Laura, and good wake up call.

Linda, if CHF runs in your family, would it be wise to avoid certain chem drugs for that reason alone?

 

[Pea-n-Me]

I believe that herceptin has a higher incidence of cardiac toxicity than adria does. IYR, heart failure has been my specialty for over 20 years, and as a major regional referral center, we've seen many cases related to adria over the years. (It doesn't mean there's a huge number of cases out there; it just means that of the ones there are, we see them all.) It made it very hard for me to get it myself (and I could barely believe the irony). At any rate, I haven't seen one case related to herceptin yet. (Hopefully not) but now that I've posted this I'll probably be seeing some soon (we do tend to see things in clusters, it's strange). I suppose it's inevitable since it's being used more frequently and wholeheartedly now. It's always difficult to make those decisions: benefit vs risk.

 

[Pea-n-Me]

We do what we have to to stay on this good earth, right?

Yes!

2 years ago I had a botched gall bladder surgery, got nicked, had to rush back to hospital, developed pneumonia, and was critical. They had such a hard tim related to my breast cancer) and need a place for them to put i.v.'s or do draws. e finding a vein, even had i.v.'s in my neck, and blood draws out of my ankle. Kind of unpleasant even tho I had 105 temp and hallucinated for a week. (Ick.)

Oh, boy, I'm familiar with that scenario. You've been through the ringer, but it sounds like you're a fighter.

 

[Pea-n-Me]

Linda, if CHF runs in your family, would it be wise to avoid certain chem drugs for that reason alone?

Laurie, that's an interesting question. I would say that (God forbid) should you ever need chemo, you and your doctors would need to do a very thorough assessment of your particular benefit vs risk.

I will say that heart failure can have many causes, and in some families, the tendency is genetic, but that seems to be pretty rare (called familial cardiomyopathy). IIR, your father's HF was related to long term coronary artery disease and hypertension, correct? If you've been healthy yourself and have no evidence of any heart issues on testing, they'd probably say you were safe to go ahead.

 

[snappy]

Yea, I guess it was CAD, poor circulation, no exercise, long history of smoking (40 years), stressful job,and hypertension that would not respond to drug therapy (mine seems to respond to the drugs I am on).

I know losing 20-30 pounds would do wonders for my BP too. I am working on it, 30 minutes before work in the am for the third day straight on my stationery bike and counting.

I am hoping more energy will result as well. A sitting down job is not the best. I find excuses to move around. Not too efficient which is hard for me because I try to be efficient. But I decided I needed to get the blood flowing more regularly.

Might even take up swimming again soon. We will see.

 

[jackskellingtonsgirl]

Dawn - Yikes! I am so sorry you are having so much trouble with the chemo! I hope you are able to tolerate the new drugs! Being finished sooner is a good thing!

I was able to come home last night. Mom is home from the hospital but she still has a way to go as far as feeling better. She is extremely fatigued. I mean EXTREMELY. As soon as her butt hits a chair she falls asleep. I am not exaggerating. Yesterday she fell asleep at the hospital and dumped her coffee all over herself - luckily it wasn't hot! She falls asleep doing puzzles, watching TV, she can NOT stay awake if she is sitting down. The nurse told her she HAS to tell the surgeon about it because it's not normal. Want to bet she will "forget" to tell the surgeon?

The area around her drain was red and very sore yesterday. They did remove the drain before she left the hospital, and she is on 2 antibiotics (Flagyl and Leviquin, I think?) so hopefully that will resolve any little infections. She is supposed to see the surgeon again this afternoon at 3 PM.

If she is this tired now then I don't know what will happen when she starts chemo. I told her maybe she needs a transfusion or something, but she is having the same issue many have mentioned - lack of accessible veins. Her left arm is still bruised from the surgery. They took blood from her hand in the lab on Monday, then she had to have an IV for the CT, they took that out because they wanted to send her home, but then they admitted her and had to put in ANOTHER IV. When they came to draw blood Tuesday to check her white cell count they had to take the IV out and wait for a bit before they could draw from that side.

I have a feeling she is going to need a port for chemo whether she wants one or not.

 

[laurabelle]

6/11- First day in the parks so it must be Epcot! Have I mentioned it's our favorite park??? Something I say a lot in real life, especially when it comes to WDW is "It makes me happy!" and I was saying it so much the first day in Epcot that my kids teased me mercilessly and it became the mantra of our trip. After we did the rides in FW we stopped in Mouse Gears. We decided to buy post cards to mail out from the old fashioned mailboxes on Main St USA when we went to MK the next morning. Specifically the box in front of Casey's...why? no particular reason, I just had that one in mind. Steroids make me whacky like that! I thought they would get a special postmark, but now I am remembering I think you have to take it to guest relations at the front of the park...oh well. I wanted to send a Goofy card to my dad for Father's Day because he chased Goofy down years ago...poor Goofy, he seems to get a lot of that. Not a single Goofy card to be found, but I got a gang picture with him in it and wrote something goofy to my dad. Then I got a postcard of the fireworks at MK to send to us so we would get it with our mail and the kids got post cards to send to friends. I'm jumping around a bit, but they don't have stamps at Mouse Gears, they told me guest relations, nope, they told me Art of Disney...I knew Pop sold them, so when we took our break we bought some there and got our cards ready to mail.

I knew what I wanted to wanted to write to us! But I forgot to have us sign it!

What I didn't realize was that my oldest dd is sneaky and when we got our mail she sent a post card to me of my favorite ride in my favorite park!

More to come...

 

[DeeCeeSW]

~~~***GAGWTA sistas***~~~

Dawn- I'm sorry to read about your reaction, it's so scary! Thankfully it was resolved quickly. I don't blame you for not wanting to try it again! FWIW I would probably choose the same cocktail. I have a very strong family history of early age (30's & 40's) fatal heart disease, so I understand your concerns about Adriamycin. Is Eprirubicin an option? It was only available in Europe when I did chemo, but I have read about people getting it in the states now. It is like Adriamycin, except it doesn't carry the same heart toxcity. My onc did a Muga scan prior to chemo and my heart function was and remains fine nearly 10yrs after doing A. I did have a port for chemo because I was already a very difficult stick and it made my life so much easier. I understand you don't want it, and since you don't have that many rounds to go, hopefully they can get it done without needing a port. I did Adriamycin and Cytoxan together and then Taxol separately. I was very sick on A/C, but new anti-nausea drugs have come out since then, Emend comes to mind. Regardless, I got through it and you will too. When do you take your steroids? This time, I was told to take all of my dosage in the morning. I still wake up at 4:00 a.m., but at least I can fall asleep. I actually opted out of steroids at the end of chemo, they drove me crazy. I asked my onc about it and she said it's supposed to help, but if the side effects outweighed the benefits I could stop.

I got my Humira yesterday!

So happy you got your Humira!!!

Thanks for the suggestion, but my insurance will not pick up Abraxene under any circumstances, so I seriously doubt they will cover a drug that has come over from Europe. However, I will call and find out. I could be wrong.

Onco told me I will no longer need to take the steroids BEFORE txs as they were for preventing swelling from the Taxotere. I will take Emend for the nausea/vomiting and he says I can use the steroids after the three days of Emend should I have any S/Es. I also have the Zofran for nausea. However, I believe they will still put Decadron in the pre-chemo bag but they don't want me taking any extra at home.

Does this sound right?

Had my MUGA this morning and my onco should have the results by tomorrow. If I cannot take AC, then I am essentially screwed. As mentioned earlier, Abraxene was the last option and it is not covered under my plan. I am still not sure if the allergic reaction to Taxotere was due to the drug entering my surrounding tissue from a bad stick (and who knows if this is really possible). It makes more sense that the drug went directly into my vein, hence the rapid allergic reaction. Who knows. I just don't want to go through that again.

GAGWTA!

 

[DeeCeeSW]

Sorry not to get back to you sooner. I completely understand how uneasy this makes you feel. No, if you have your chemo is your veins instead of a port, as we both did, your veins become 'tough' is how it was told to me. They almost disappear, and they can no longer use it for blood tests or any other iv's. They just can't find a good vein in that arm. I never had any pain of discomfort - they can draw blood out of your hand, as those veins are not used for chemo. They just use a smaller needle, usually what they use for children, as those veins are so much smaller. Inconvenient, and a bit more tender area, but again, the price is something I'd pay again. It's all so stressful, I know. I went for my yearly checkup, and passed the chemo room. I just hate to see people go thru it, and I'm sorry you do. But think of it this way - you're at least 25% thru chemo! Get lots of rest, and hold you head up!!! You're a survivor!

Thanks for your response. Oddly, my onco's office PREFERS to put the IV in either my hand or wrist. They try to avoid the arm as much as possible, in fact, it almost sounds like they refuse to use it. I had the IV/catheter put in for tx #1 in what's dubbed "the intern vein" since it is apparently the easiest to find and use, which was on the right side of my wrist.

For disasterous tx #2, the IV/catheter was put into a vein on my hand. I have brought up using my arm on several occasions and it is very clear that they are really not keen on it. Do I insist that they use it as I only have 3 txs left? Should I say I will go elsewhere for tx if they are not willing to work with me on this?

My favorite nurse says she ahould be able to find a new spot next week and then can always go back to the spot on the wrist bc it will have been 6 weeks since it was first used. That would bring us up to tx #4. I really DO NOT want the PICC or port.

 

[laurabelle]

So happy you got your Humira!!!

Thanks for the suggestion, but my insurance will not pick up Abraxene under any circumstances, so I seriously doubt they will cover a drug that has come over from Europe. However, I will call and find out. I could be wrong.

Onco told me I will no longer need to take the steroids BEFORE txs as they were for preventing swelling from the Taxotere. I will take Emend for the nausea/vomiting and he says I can use the steroids after the three days of Emend should I have any S/Es. I also have the Zofran for nausea. However, I believe they will still put Decadron in the pre-chemo bag but they don't want me taking any extra at home.

Does this sound right?

Had my MUGA this morning and my onco should have the results by tomorrow. If I cannot take AC, then I am essentially screwed. As mentioned earlier, Abraxene was the last option and it is not covered under my plan. I am still not sure if the allergic reaction to Taxotere was due to the drug entering my surrounding tissue from a bad stick (and who knows if this is really possible). It makes more sense that the drug went directly into my vein, hence the rapid allergic reaction. Who knows. I just don't want to go through that again.

GAGWTA!

Dawn- Sorry for the confusion... the drug Eprirubicin (Ellence) was available in Europe first and when I did chemo in 1999 it wasn't available here, but it is now. I don't know everything about it except that it carries less heart toxicity but is the same type of drug as Adriamycin. Just something you could ask about.

The steroid/anti-nausea plan sounds right to me. The steroids help in a lot of ways, especially when it comes to fighting nausea. I have a love-hate relationship with steroids.

Even though your I.V. infiltrated, the Taxotere did get into your veins, thus causing the allergic reaction. What you described is pretty classic. I wouldn't risk another dose as I'd be afraid the second reaction would be worse. The Abraxane is similar to the Taxanes, but yes, right now only available for metastatic bc. This doesn't mean that you have not gotten everything you should, or that there isn't anything else you can take. I know a few other sistas who could not tolerate Taxanes and didn't get the full dose.

Sorting out what to do next is not fun, the testing is tiring and stressful. I'm praying for you sista.

 

[laurabelle]

As usual, a good article here on Abraxane...
http://www.breastcancer.org/symptoms/recur_metast/new_research/022405.jsp

 

[lookingforward]

I hope everyone is hanging in. My mom's memorial was last Thursday and it all seems like a bad dream...although the memorial was beautiful and meaningful and everything she would have loved.

I am so depressed that I can't function sometimes. I came back to work this week at my father's urging and it is hard but good to keep busy. At night I lay in my bed and try not to sob all night. I'm not sleeping well.

My radiation is almost done. They may end after 28 treatments (tomorrow) since my skin is getting really burned. If so, my dad is going to come and take me out to celebrate. My mom and I were supposed to do it and he wants to come in her place. He says she would have wanted that. My father is being so strong and loving...I am amazed at his strength. He had 50 happy years with my mom.

I wanted to tell you that I had six treatments of TAC chemo and on my sixth I had a reaction to the Taxotere...I got red and itchy. They shoved benydryl into my iv and it went away, but the reaction only happened once...on my last treatment. I do have some numbness from the taxotere in my toes and fingers, but it is going away slowely.

Hang in and GAGWTA!

 

[DeeCeeSW]

Dawn- Sorry for the confusion... the drug Eprirubicin (Ellence) was available in Europe first and when I did chemo in 1999 it wasn't available here, but it is now. I don't know everything about it except that it carries less heart toxicity but is the same type of drug as Adriamycin. Just something you could ask about.

The steroid/anti-nausea plan sounds right to me. The steroids help in a lot of ways, especially when it comes to fighting nausea. I have a love-hate relationship with steroids.

Even though your I.V. infiltrated, the Taxotere did get into your veins, thus causing the allergic reaction. What you described is pretty classic. I wouldn't risk another dose as I'd be afraid the second reaction would be worse. The Abraxane is similar to the Taxanes, but yes, right now only available for metastatic bc. This doesn't mean that you have not gotten everything you should, or that there isn't anything else you can take. I know a few other sistas who could not tolerate Taxanes and didn't get the full dose.

Sorting out what to do next is not fun, the testing is tiring and stressful. I'm praying for you sista.

Sorry, it was me who was confused! I read over what you said and realized the drug has been here for a while! I was reading about the combo with Ellence (is it FEC?) and I am not sure if it is something my onco would find appropriate for me (right now this is only an assumption bc he did not suggest it as an option).

I will not try the Taxotere again. Waiting on the MUGA results so I can start the AC on Tuesday. I am nervous about the side effects and if they will be worse than the TC. I did well after the first tx, only experiencing some GI issues. I worry about mouth sores, nausea and vomiting with the Adriamycin (this is what I am reading on other sites). I am hoping the Emend takes care of the nausea. So what you are saying is that it sounds right to NOT take the steroids BEFORE tx now that I'll be getting Adriamycin?

Went in for an expansion today. I am now filled to the size of what my actual implants will be. My PS will probably fill me up twice more, to have some skin to "play with" for the exchange surgery.

Needless to say, it has been an exhausting week and I have made plans to sleep in tomorrow. My DS (7) is driving me NUTS today. He does not start camp until next week. I had to "drag" him (as he says) to all the appointments I had this week. Not fun for him or me. He is not able to fully understand what I am going through, and although I do not expect him to really get it at this age, he has put me through a lot this week. I am trying my best to be patient. Breathe in and out, in and out, LOL.

GAGWTA!

 

[DeeCeeSW]

I hope everyone is hanging in. My mom's memorial was last Thursday and it all seems like a bad dream...although the memorial was beautiful and meaningful and everything she would have loved.

I am so depressed that I can't function sometimes. I came back to work this week at my father's urging and it is hard but good to keep busy. At night I lay in my bed and try not to sob all night. I'm not sleeping well.

My radiation is almost done. They may end after 28 treatments (tomorrow) since my skin is getting really burned. If so, my dad is going to come and take me out to celebrate. My mom and I were supposed to do it and he wants to come in her place. He says she would have wanted that. My father is being so strong and loving...I am amazed at his strength. He had 50 happy years with my mom.

I wanted to tell you that I had six treatments of TAC chemo and on my sixth I had a reaction to the Taxotere...I got red and itchy. They shoved benydryl into my iv and it went away, but the reaction only happened once...on my last treatment. I do have some numbness from the taxotere in my toes and fingers, but it is going away slowely.

Hang in and GAGWTA!

Maureen,

Again, I am SO sorry about your mom. I can feel your pain and wish I could "make it all better." You hang in there! Sounds like it's a difficult time all around with the radiation too, but that will end soon. My best to you and your dad and your whole family.

Dawn

 

[lookingforward]

Sorry, it was me who was confused! I read over what you said and realized the drug has been here for a while! I was reading about the combo with Ellence (is it FEC?) and I am not sure if it is something my onco would find appropriate for me (right now this is only an assumption bc he did not suggest it as an option).

I will not try the Taxotere again. Waiting on the MUGA results so I can start the AC on Tuesday. I am nervous about the side effects and if they will be worse than the TC. I did well after the first tx, only experiencing some GI issues. I worry about mouth sores, nausea and vomiting with the Adriamycin (this is what I am reading on other sites). I am hoping the Emend takes care of the nausea. So what you are saying is that it sounds right to NOT take the steroids BEFORE tx now that I'll be getting Adriamycin?

Went in for an expansion today. I am now filled to the size of what my actual implants will be. My PS will probably fill me up twice more, to have some skin to "play with" for the exchange surgery.

Needless to say, it has been an exhausting week and I have made plans to sleep in tomorrow. My DS (7) is driving me NUTS today. He does not start camp until next week. I had to "drag" him (as he says) to all the appointments I had this week. Not fun for him or me. He is not able to fully understand what I am going through, and although I do not expect him to really get it at this age, he has put me through a lot this week. I am trying my best to be patient. Breathe in and out, in and out, LOL.

GAGWTA!

I did the Adrimycian, they call it the red devil. It wasn't that bad...I just took the after meds for nausua...I got sick once in six treatments. I did have a port though, its rough on the skin and veins....but a lot of others had IV's. The port was a big pain in the neck (Literally). You are lucky you got filled during chemo...my counts were always so low they could not fill me at all.