Chemotherapy for Stage IV
Comments
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Re the Abraxane and hair....I really can't remember if it started growing back before I went off it or not....I will have to look at pics to refresh my memory. I do know I went completely bald on that one...also lost my eyebrows and lashes. Hair did start growing back while I was on halaven....that was one I did not lose all of my hair on,...I called it half hair and it was worse than not having any hair at all in mho.
I thought of something people say to me that does upset me, when they say You look so good or You look so healthy. To either of those my reply is always, Yeh, Right. I mean would they actually comment if I was looking bad with something like My, you look really terrible. Sometimes I think they are disappointed that I don't look sick.
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Let's hear it for the Adriamycin.....my CA 27.29 was 885.2....that is way more than I was hoping for as I was just going to be thankful if it had dropped to 1,000. And the liver function is still normal. I am so tired that I am going to go to bed and get up later to watch Grey's Anatomy and finish decorating the cookies I promised to a friend for a shower she is having.....so I am tired, but happy, VERY happy.
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Ok, ladies, HELP ! I've said earlier my first experience with port insertion was not good. The radiologist called about my appointment tomorrow to see if I had any a questions; did I understand the procedure. I explained what happened last time and I just was very anxious. He ask when that was and pulled up the operative report - then sees what I was talking about. Pulled up my recent CT with contrast and could see the vein. He ask me questions about using the right side, how many radiation treatments to that side. I shared with him what my oncologist said about using that side. Said the radiologist will meet in the morning and will discuss. He is glad he called and glad that I shared this info with him.
So my question is this - they use the juguar vein and the problem is that mine gets VERY narrow. The radiologist last time, I was told today, had to dilate the jugular vein to insert the port. REALLY??? The jugular vein - I was never told.
So I am not looking forward to tomorrow at all - I understand they will be better prepared this time but not something that doesn't make me nervous. Has anyone else had this problem?
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Naniam,
Considering your past experience you are understandably nervous. Actually, any surgical procedure is cause to be nervous. I didn't know my port was inserted into the jugular vein until recently and it's been there a year. I didn't ask questions and guess I'm glad I didn't know! I do love my port and have had no problems at all with it. I'll be praying all goes well for you tomorrow. Ask them to give you something ahead of time to calm your nerves!!
Glenna0 -
why does this post have a red notice saying new???
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It's red if it's a new post. If you've read it and signed out, when you come back the red should be gone unless there is another new post.
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dellmonica just wondering if you are still on here, and how are you doing. i have just been dx with reacurrance liver lung and spine. was wondering how your treatments went and did you say you did clinical trials i am starting ixempra on the 29th. just hoping you could give me some info. and the other ladies from maryland please let me know if you know of any new parp inhibitors trials going on in our area. thanks and bless you all
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I got my port placement today and think this is the way a port placement is supposed to go. Seemed everyone was aware of my previous horrible experience and determined to make this a good one.
All the radiologist had their meeting this morning and I was discussed - they still used the left side but used the subclavian. Nurse said they were not using the jugular (used the first time) because "it is to narrow and tortuous". Thankfully the doctor called his patients the day before and I could relay what happened, he could pull up the previous operative note, look at the CT scan with contrast and see the vein and the problem and they decided to go a different route.
Late to be posting but came home and took a nap and my meds are just now kicking in for the night. So thankful today was a pleasant experience - they didn't try to use the jugular for the reasons above.
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Hi Naniam
So glad it was a not too horrendous experience with the port - so good when people listen to us! Hope you got a good night's sleep.
Laurie x
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Naniam: Happy things went well for you! Jean
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Nan glad to hear your port placement went well. Ports are the only way to go for me! My veins are small and run and hide from needles, don't think I would be a chemo nurses favorite patient
Good luck with your treatments.
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Glad to her all went well with the port placement! It is fantastic when you have a group of doctors and nurses who listen to you and respond well. It is supposed to be a group effort and each of us is a part of that group!
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Yeah for a good port insertion! Thank God for docs who listen to their patients.
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Kayleigh 384
I experienced the same thing. My onco did not start out with chemo because the lung nodes were quite small....he thought the Aromasin would get rid or shrink them. He told me that even if he did nothing for 4 months, it would still be fine. I felt the same way you do ... kind of frantic. Anyway, after 3 months of Aromasin, I had a mixed response. Some of my tumours got smaller, some got bigger. Even within my lungs alone, some got smaller, others bigger. My onco told me then that the only time he starts chemo rather than an anti-estrogen pill is when tumours in the organs start growing at an accelerated rate. Therefore he did put me on Paclitaxol at that point. But they really do take a "wait and see" attitude these days, with all the other options. I think I have the best oncologist in Canada and trust him totally so I think your oncologist might just be trying to save you extreme measures till he knows how the nodes respond.
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Where is everyone? It's been pretty quiet on this thread. I had a PET scan on Friday and the news wasn't what I hoped for but it could have been worse. Looks like NED broke up with me and I have slight progression in the lining of the lung. Fortunately, no other spread. My oncologist wants to have the PET read and diagnosis confirmed by his favorite radiologist which will happen next week. If progression is confirmed, he is talking about stopping gemzar and starting me on doxorubicin liposomes (a form of adriamycin). I've researched it a little but would love to hear from anyone who has received it in this form.
Hope everyone is having a great Memorial Day weekend and enjoying summer weather.0 -
Hey Glenna
Sorry to hear that NED had wandered off but hopefully will be lurking around waiting you jump you again soon!
I've switched to Vitamin X so have been hanging out over on that and other threads. So far it doesn't feel like chemo but it's only my first week so hope I haven't jinxed myself saying that! I sent a couple of messages to Kimber. She's not logged in since 9th May and I've been a bit worried since I know she was having a rough time with her lungs. However she did say she was going to be enjoying time with her family so hopefully that's what she's doing.
Hugs
Laurie x
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I have one month to go on Abraxane, I'm not feeling very positive. I feel pain in my liver from time to time, which, or course, is frightening. I've been reading on treatments to consider for next step. I started reading up on Affinitor. The old posts, back in November, sound so positive. The newer posts are not as positive. Side effects seem to be creeping in for some now.
So, I'm just wondering ....those of you who have been on iit for awhile, is it working for you? Would you recommend trying it? My daughter said she would go to Tx with me if I chose to go to MD Anderson.
Worst thing I read is the percentages. Abraxane works in 30% of the women who take it. Not the best chance, is it? I looked up Affinitor expecting to see much better stats. NED is a 35% chance. I'm not sure if that stat includes the arimidex or not. Anyone have any stats coming out of the study with the two?
How long are you typically on this drug combo? Reading through the posts, sounds like some are on it for over 6 months. This seems long to me.
Well, any advice on this would be appreciated. Always good to get real stories to add to the reading.
I had no trouble with arimidex on its own. So, that factor shouldn't be a worry for me.
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Sorry you are feeling down about Abraxane. It's done OK by me, but I've had to skip a number of treatments due to neutropenia. I think the next one up for me is Halaven. It seems that the stats on any given treatment are shockingly (to me) low. When Faslodex didn't work for me the onc said it wasn't surprising as it only works for 1 in 9 women! I guess it only matters whether it works for you!!! JustJudie is doing an Afinitor clinical trial at MD Anderson. You might check with her.
Hugs
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Just had my 2nd dose of Gemzar at a higher dose (300mg more) then last may when I became stable on it. It is kicking my butt! Thank God I am on a 2 week on schedule, 1 week off because I am sick! UGH! Just pray it fixes all my problems that have occured from new liver mets and adverse rx to Aromasin. Out of all the meds in the last 5 years, this drug Aromasin beat Taxol in reaction. Dang near did me in!
Dawn. PS. Anyone had low grade temp 99-100 and chills the next day? Monitoring temp, taking motrin 400mg. Wonder if it is due to the higher dose and me being ill before the start of tmt from adverse rx to Aromasin? 0 -
Soleil, I start Abraxane on Tuesday. Reading the stats you posted on it and then the skidoo posted on Faslodex, I was surprised at those. Hoping the Abraxane is truly working for you. Did you have nausea? Do you know the dosage you were given. lk
I honestly thought as far back as early March that the Faslodex wasn't working. I had never had sore spots on bones other than the left hip and it required rads. I also had some pain in the area of the liver but it was stable on the scan.
China, I don't know anything about Gemzar - don't know if a low grade fever can be a side effect of the drug. I hope the nausea settles down for you though. What are you using for the nausea?
Painters are working on the inside of the house. I started taking wallpaper down in our bathroom but that is when my arm startd bothering me so much and I couldn't finish. I don't know what they used but it was not DIF that I used but strong and went all over the house. Because our house is older and we have the popcorn ceilings he painted the ceiling in there with an oil based sealer and he had to leave the bathroom 3 times. He has sanded the walls, patched, sanded again, patched and Friday he put a sealeron the walls and he had to leave the bathroom 3 times as it is so strong and gives him a headache. That one along with painting some trim in the house, sent us out of the house Friday. We are still gone. Tomorrow they are going to paint the rest of the trim and walls - that shouldn't be so bad. I told him we were only going to do one more ceiling and that was a bedroom where we had a leak from one of the dormers needing caulking and he is going to do that while I am getting my Abraxane. We are using window fans to try to pull it out of the room but it is strong and I don't think it is probably good for me. Both my husband and I had sinus issues and was on antibiotics. I hope it isn't so bad when we get home tomorrow and they have painted trim and the walls.
It is late and I am falling asleep as I try to type - hope this makes sense.
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Oh boy, Nanian, stay away from that. Seems like once a little irritant gets near my lungs, it goes wild.
I have had very little nausea on the Abraxane. Doctor gave me anti nausea, which I take when it starts creeping in. Before taking the pill, they give me three pills, one is an anti nausea , that other two are steroids. I asked them to remove the steroids this round. The nurse thinks I'll be fine without them.
I'm kind of shocked about the 1 in 9 on faslodox. It did not work for me, also made me kind of ill. doc told me I could choose between that and xeloda. Of course, I chose the hormone, not wanting chemo. . Doc didn't tell me those were the stats. She explained very little.
Now, I'm all into reading the stats. None of them are really great. Which might explain why none of this stuff has worked so far. My doctors keep everything to themselves. I think they are afraid, I'll just say no treatment if they tell me all the facts. Anyway, I asked her directly about Abraxane last time I saw her. I said, "I have a 30% chance on this, correct?" She said chances were actually quite a bit higher depending on all the variables.
So, I have one more round then scans and we'll see. Good luck to everybody with all this chemo!
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I found gemzar to be the easiest chemo I've ever taken. Was on it for about 7 months. Unfortunately seems it's done all the good it can do and I will be switching again. No fever that I recall but definitely fatigue and sometimes chest pain. The neulasta may have been the culprit there. My schedule was on two weeks, off two weeks. hope it works well for you!
Neither faslodex or xeloda worked for me. Taxotere, on the other hand, kicked butt. SE's caused my doc to switch me to gemzar. It's really a crapshoot, isn't it? I'm at my 4 year anniversary though and didn't expect to make it that long ..... So will keep on trying and hope for new stuff to try!!
Alesta, I pm'd Kimber but didn't hear back from her. I'm worried. She was really having a rough time.0 -
Hi All,
I am very happy to share with you all that my Mom is doing really good now. Her Chemos have been stopped (after 14 chemo, 1 chemo per week) and now she is just using tablets of the Chemo drug (3 tabs a day). She is doing good and wishing you all luck. She is eating good now, atleast 3 servigs of fruites and breakfask, lunch and dinner. Drinking Milk with some multivitamin/ nutrants powder. So so far so good. Thanks a lot for all your wishes and praers for my mom. Special thanks to Sue & Glenna.
Regards
Hansraj0 -
Hans - OH that is good news...we jes LOVE good news on these threads. Thanks for keeping us in the loop...will still send prayers your way!
Glenna - sorry to hear your news...glad you can say it's your 4th anniversary..will send healing thoughts and prayers that this new tx works and brings you to many more anniversaries.
Kimber & Alesta- prayers and healing thoughts to you too...hope you are just enjoying family!
China - I have been on Aromisin since Sept....have horrible hot flashes, so I do get chilled for a min after a flash, but other then that no reactions. Sorry I can't help on the Gemzar and taxol...I jes pray you can tolerate and that it helps fight this beast...!
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I will be traveling to go to my brothers wedding on Thursday. A couple of questions, my onc says to wear a mask (as I am reaching my 6th treatment upon my return) has anyone travelled and have any tips on masks? Also, I am going to wear my head wrap, will airport security make me take it off? Also, will the port in my arm set off the alarm?
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I went to a wedding recently, did NOT wear a mask, and got very sick and had to postpone chemo. I noticed that the ones they give out at Johns Hopkins are standard inexpensive earloop style masks. I got sent to the backscatter machine each time and refused the extra radiation, earning myself a special pat-down. I was wearing a wig and they did not make me remove it. The port in my chest did not set off the alarm.
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Thanks! Well, will surely wear the mask, they give them out at the hospital. I just hope it helps! I was debating not going because last time my WBC s did not go back up, so I am really worried! I booked a straight flight hoping that will help too, but we will see! I am really nervous. Thank you so much Skidoo!!
Kris0 -
Hansraj: Love to read good news. Happy for you and your mom!
China: Is it okay to take Advil with your treatment? Just asking cuz I noticed on Taxol I can only use Tylenol.
Glenna: So sorry to hear you did not get great news. Let's hope and pray the next choice brings you back to NED.
kfontaine: My little tip: My husband opens all doors for me when we go in and out of places. If you traveling with someone, ask them to open doors. I also use my elbow and hit the Handicap buttons to opens doors. Keeping your hands off your face is a good one too. I figure any little thing I can do to be proactive against germs is good.
I've had this sudden outbreak of skin mets recently. I only had them on my right chest wall, but now my left side has grown at least 30 or more in just a few weeks. My onc shared that Taxol is like a truck when you put the brakes on, the truck does not stop right away. Had my second dose of the Taxol yesterday. If it goes like the first dose, tomorrow and Friday will be my most heavy days of nausea. Had trouble with throwing up last time, so I'm trying a few tips from onc to avoid that this time. White cells dropped, but came back up in time for the 2nd round. Other than that, no news here.
Question: Where do you all read stats on your specific treatments?
Wishing for the best for all of us!
Jean
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Jean - I found all of my answers to treatment on this site. Had to do some surfing but found each item I looked for. I was allowed to take Ibu and/or tylenol during my treatments. Did your onco give you anything for the nausea? I had a prescription, but rarely took it...did oK on ginger ale, ginger snaps, ginger tea, etc. Kept the 1st 2 items on my night stand. Room temp and flat for the ginger ale worked best for me. Hope it helps. And keep in mind that the side effects to chemo are cumulative...they get worse with each round. I did not kno that going in to this but when I was told near the end...I learned to jes settle into it and kno I would be down and sicker each time. You can get thru this...will be praying for you..Hugs!
Kristen - I started same tx you are currently on on May 23, '11. I flew from LV to Boise in July. I did not wear a mask but I carried clorox wipes and hand sanitizer....used both alot, that and washing my hands and using the drying towels to open doors whenever possible or my elbows. Stayed in a hotel and had no problems. My DD had a kidney transplant recently, she and my DS were with me...she is auto-immune so helped me alot with battling the germs. A mask will make things better for you, so if you can, use it. I have a chest port, voluntarily told them about it, so if it went off, I was not aware of it. My head was buzzed at the time, I did wear a hat, but happily took it off thru scanning. Hugs!!
Sue
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Thank you for the tips. Actually did wipe down everything on the plane with clorox. Tried to keep my hands off of things. But made it through the airport ok, I hope!!
Saw my family for the first time since all of this started and all I got was pity stares and people treating me like I was dying tomorrow! One person that I met that knows would not even shake my hand!!! I thought it was just she did not shake hands but nope, twice I tried to shake her hand and twice she pulled away and shook the persons hand behind me! wow! Feel like a total freak at my little brothers wedding!!! I can't take this! I really really can't! This is what the rest of my life is going to entail....can't do it! I hate this so much! Everybody having a good time until I walk inbthe room! I can't live like this!0
