Carbo / Taxol / Avastin...next round of treatment

[tjrasMOM]

Hello,

I see many new names. It always makes me sad to see new people just starting off here. It's so scary at the beginning. It's scary always, but you do have breaks. I couldn't sign on for some reason for a few months. I guess during site repair or something. I was getting so many weird messages, but here I am, again.

My mom is about to start her 2nd round of chemo. It's been a glorious 18 months or so while Mom was in remission. For those who remember, we traveled to JAMAICA last May 08. Had a great time! The year has been filled with blessings. Mom has been volunteering at my daughters' school - teaching art (painting, pastels and drawing) to the children. She has bonded with my daughters' teachers and has become a well known figure on campus. My girls are SO lucky! But this week we received bad news. Her CT scan showed spots last week.....this week the bone scan confirmed that the cancer has spread to her bone. There are spots in her pelvic bone and spine. She starts a new round of chemo next week. Carbo, Taxol and Avastin. She had Carbo / Gemzar before. But this time her oncologist said she will more than likely lose her hair with this "cocktail". Is that true for everyone? She is so upset about this. Chemo or stress or something made her gain about 25 lbs over the past year and that has depressed her. She was even put on prozac because of her depression. Depression over bills, weight, health, etc. My aunt told me tonight that my mom has stopped the prozac because she thinks it made her gain weight. But she was so much happier.......I need to get her back on it if she did in fact quit taking it.

But tomorrow we go through an information session regarding the new chemo cocktail. I forget what everyone has said about taxol and avastin. If anyone wants to tell me the side effects, I'm all ears. I find the members here so much more helpful than the chemo nurses....

Thank you.

Tova

[jaminkw]

She starts a new round of chemo next week. Carbo, Taxol and Avastin. She had Carbo / Gemzar before. But this time her oncologist said she will more than likely lose her hair with this "cocktail". Is that true for everyone? She is so upset about this. Chemo or stress or something made her gain about 25 lbs over the past year and that has depressed her.

Please Tova, tell your mom this for me. I did this new cocktail she's doing (my chemo nurses called it the "big guns") and it kicked my IIIb lung cancer into remission after six infusions and two more of Avastin maintenance. Yes I lost my hair. Tell he to shave her head and put on makeup and a nice black top and have someone take her picture. I saw a pic of me too late but next time the hell with the wig. A nice wig (I had one that got lots of compliments) on hand when the treatment starts is good. I waited to get one and it happened sooner than I thought. I didn't do too well with the scarves altho they can look great. I also gained weight, 15 lbs on treatment but I think it was more about all the bread I used to fight naseau that got to be a habit! I'd never been a bread lover, now I am. Your mom is a fighter and is probably still here partly because of all the good things I hear you saying she is doing for herself. Tell her fatigue might slow her down for awhile but this cocktail is worth it. I'd do it again in a heartbeat but maybe not the Avastin maintenance beyond those first two. That's a real personal subjective decision.

Good luck to mom.

Judy in Key West

[sunnyside]

Tova,

That cocktail was my first line treatment from 3/08 - 8/08. I don't know of anyone who doesn't lose their hair with the Taxol. It happens really quickly right about 2 weeks after the first treatment. I didn't bother with wigs (I got two but didn't use them). I mostly just went bald - sometimes wore scarves. The Taxol also cause muscle and bone aches for me from day 3-6 after chemo. It resulted in ~40% reduction in all visible tumors for me.

Good luck to your mom and have a great visit to Jamaica later this year.

[recce101]

Hi, Tova, it's good to hear from you and see those beautiful faces once again. I'm probably one of those you remember from when you were actively posting, and I had the Taxol/Carbo/Avastin regimen as my first line. I still have lots of detail about side effects in the link below.

My side effects were probably about average overall, though they were weighted more towards skin problems and less toward the systemic blood count problems that some people have. I did have the Neulasta injection (to boost white blood cell counts) automatically the day after each of the 6 Taxol/Carbo infusions. Fatigue was the most predictable side effect, but it just meant more naps, and there was never a day that I was so wiped out that I couldn't do something productive.

Best wishes and Aloha,

Ned

[tjrasMOM]

Ned!! Of course I remember you. You've always posted my favorite responses. =) It's so great to see a familiar face again. How are you? Thank you for the heads up about the skin conditions. Mom's oncologist also warned her about tingling in the fingers and hands. I've been reading the responses to mom over the phone this morning. She was relieved to know that so many have been through this cocktail and have positive things to say about it. I think hair loss is a big deal for most women....and Mom is not looking forward to it. But the most challenging and frustrating thing for Mom is her weight gain. Is weight gain common after chemo? Because she gained a lot of it after her 1st round of chemo a year or so ago. It depresses her and is the only thing between her giving 100% towards this fight. Last night she said to her sister and I, "I don't mind being bald I guess.....and I don't mind being fat..........but GOD, I don't want to be bald AND fat!" Of course we all sat there and laughed with her.......but inside, I know this is the worst part of it all for her.

Anyway, I have to get off the computer and go help Mom. She's teaching an art class to BOTH of my daughters' classes today. I go help clean up around the children while Mom gives instruction. She has become the STAR Art Teacher for their classes. And Mom is loving it because it's volunteer work......she's not on anyone's schedule or rules. She just gets to be with her granddaughters and all their friends......teaching them the wonders of water color, pastels, etc. =)

[sunnyside]

Tova,

I've gained about 15 pounds since I was diagnosed in March. A lot of mine has been like Judy said, eating to keep nausea at bay. It is also very difficult for me - most of my clothes don't fit and I feel like anyone with incurable lung cancer and no room in the budget shouldn't be going out and buying new clothes. I also tell myself that it's stupid to worry about it - if the cancer were winning I'd be losing weight so I try to remember that those pounds mean I'm still keeping the cancer in check. The other thing you might try is talking to your mom's doctor about an alternative to Prozac. Prozac is every non psych doctor's knee jerk choice for depression, but there are some out there that have less effect on appetite. One I like is Wellbutrin. Just a thought but anything to help her stay in the saddle and fighting.

[jaminkw]

Thanks sunnyside, not many people understand naseau=eating. I found out from my dr when I had my first child that I wasn't crazy. It does happen and it makes sense physiologically as he explained it.

I've used the arguments you pose about the added weight also, especially if the cancer were winning I'd be losing weight. That's a powerful one.

I also agree with a change in the the antidepressant. As a practicing mental health therapist, I saw Prozac go out of fashion years ago. Wellbutrin is the one I heard most often in recent years, and it's endorsed by my RN daughter. Anxiety not depression is my issue so I don't have personal experience but a change there is certainly reasonable.

Your mom has so much going for her Tova, I just know that with your help, she'll work her way through this.

Judy in Key West

[kukla]

My husband Glenn just had his third cycle of carbo/taxol/avastin. His hair fell out around week 2 of the first cycle, but he has kept most of his eyebrows and eyelashes. Hair on the top of his head started growing back after 2nd cycle. Oncologist said it probalby won't fall out again.

He's taking a lot of anti-drugs so he hasn't had a lot of nausea. They give him steriods with the taxol, and that keeps him hungry. I keep healthy foods in the house for snacking - fruits, nuts, etc. He's maintained his weight, but hasn't significantly gained or lost.

Also, he does have some tingling and numbness in his toes and feet from neuropathy. I'm getting ready to schedule an appointment with a physiatrist who also does accupuncture. Anyone who has any experience with accupuncture for neuropathy, I'd love to hear about it.

Good luck to your mom! Jamaica is awesome, we got married there.

[tjrasMOM]

Wait, I'm confused.....does the hair grow back right away, or do people stay bald through the treatment? Mom's oncologist says that we'll probably try to do 5 cycles. She gets a big dose every 3 weeks. So, 3 X 5 = 15 weeks of treatment. I was thinking that she'd be bald for the whole 13 weeks or so and then once therapy stopped, her hair would grow back.......

[Flyman35]

Tom ended up with 7 total cycles of Carbo/taxol without the avastin. He started losing his hair 2 weeks into the first cycle. We shaved him down to a crew cut and he never did lose all of his hair but it thined out considerably. It didn't start really growing back until about a month or so after the last cycle.

Denise

[sunnyside]

Yeah, I had eight cycles. Fell out two weeks after 1st cycle to the point that I had it shaved. Stayed thin enough that I occasionally shaved through treatment. Started seriously growing back about two months after I finished (last cycle 8/12/08). I just had my first trim last week!

[kukla]

My husband lost almost all of the hair on his head and then it started coming back in. It's fine and very, very thin, but it's hair. I would say to get your mom a wig, but there it may come back in before all of the cycles.

Right now we're on 5 cycles of carbo/taxol/avastin. that may change but it's a very long day of chemo. We're usually at the doc's for about 5-6 hours.

[Wendy]

Welcome back, although I wish it was just to check in and not that your mom is back in treatment.

The one thing I wanted to add (and maybe one of the other survivors/friends already said) was to make sure that your mom drinks lots of water. My sister in law took Taxol and had lots of leg pain/aches. Drinking gatorade and water daily helped her tremendously.

Take care and keep us posted on your moms progress.

Wendy

[fillise]

Like others here, Mom's hair loss began two weeks after the first taxol treatment. She wears a wig outside and in the house she has several cute little hats that she has decorated with pins. It takes a little getting used to, but the hats are really cute and she is able to match them with whatever sheis wearing (she bought them at the dollar store, but they are adorable).

She finished her first set of chemo treatments in May of 2007 and it was probably October before she would go out without her wig.

Susan

[fillise]

One other thing. My mom gets a Neulasta shot the day after her Carbo.Taxol/Avastin. She HATES these shots as they tend to make her bones and joints hurt for a few days. Her onc. recommended that she take Claritin the day of and for three or four days afterwards (Mom takes one every day) and it seems to help. The pain is also worse in the mornng so she puts some Tylenol or Ibuprofin next to her bed and takes them when she first wakes up. If she goes back to sleep for a little while, her knees don't seem to hurt as much when she gets out of bed. The effects from the Neulasta seem to peak on days 2-4 after the shot. But it keeps her white counts high enough that they haven't been a problem.

Susan

[tjrasMOM]

Well, Mom had her 1st chemo appointment last Friday for the Taxol, Carbo, Avastin cocktail. Her 2 sisters and I all spent the day coming and going while she sat there for 8.5 hours. We arrived at 8:30am and were there until 5:10pm. We were the last to leave the oncologist's office, aside from the closing nurses. =) What a long day. But our spirits were up, and Mom didn't have a reaction to Taxol, which the nurses explained, many people do have the first time. Saturday was fine. By Sunday morning she couldn't move. She said it felt like her ovaries were cramping and twisting. She did not get out of bed all day. When I called her at 7pm, while picking up dinner for the kids and my husband, she was practically in tears. I came over and called the 24-hour phone service at the oncologist's office. They explained that she could take Tylenol or an older prescription of pain killers until she had her appointment the next day. Monday she saw her oncologist. He examined her and said it didn't seem like organ rupture, which can be a dangerous side effect of Taxol. But he increased her pain killer meds....from 325mg of Vicadin to 750mg. He said he wanted to keep an eye on her and asked that she come in the next 2 Thursdays until her 3rd week, when she is scheduled to get her 2nd dose of this chemo.

By Tuesday she was vomiting and nauseous. The cramping had gone, but the bone & joint pain had taken it's place. She stayed on the pain killers that day. By Wednesday the nausea was gone, but the joint pain still lingered until Friday. But she didn't want the pain meds. She was also given some prescription antacid to help with the cramping and bloating. And of course the fatigue has started. So, it's been a rough first week for Mom. The amazing thing is that once she feels even half way normal, she's dressed with her make-up done and hair curled, ready to go where ever I want to go. Saturday we celebrated my grandpa's 96th birthday at a Harley Davidson biker bar where my uncle hangs out. Not quite the place Grandpa would have chosen, but it was fun regardless. Next Tuesday my aunt takes Grandpa on a 3 week vacation to Mexico. While he's gone, my mom has the house to herself. So we have lots of sleepovers planned with other nieces and aunts. Everyone wants to come spend quality time with Mom....or at least spend the night and help make her comfortable while she goes through this crappy chemo. Plus, no one wants her to be alone. Grandpa is a very healthy 96-year-old and even though he can't hear very well, he is capable of driving Mom in the event of an emergency.

I really hope it's not as bad next week for Mom. She said that she didn't know how she'd get through 4 more cycles of this. I think we just have to rely on the drugs (pain killers) to get her through the 1st couple of days. =)

[tjrasMOM]

Oh yah...Mom is scheduled to get her $4,100 shot of Nulesta next week.

[jaminkw]

Wow, you mom is really a fighter. Sorry it's been so rough on her so far. Hope it gets easier or they at least get remedies in place for her side-effects. Don't the cost of these drugs just floor you!

Many healing thoughts coming your mom's way. Love the picture.

Judy in Key West

[recce101]

Wow, what an ordeal! Let's hope the cramping was a fluke — don't think I've heard of that one before. Did your mom get an antinausea prescription to use at home? She probably got an antinausea premed, something like Aloxi, which my NP says lasts 4 or 5 days, consistent with the timing you mentioned (infusion Friday, nausea Tuesday). If so, she probably should take it automatically without waiting for something to set in. Of course most of that stuff tends to cause constipation, another biggie, and you've absolutely got to stay ahead of that. The bone aches (especially from the Neulasta) and fatigue are very normal, though that doesn't make it fun. I hope she has some good days before it's time to do it again. I always did, though they became fewer with each cycle. Many hugs.

Ned

[SandraL]

Hi Tova. I am sorry to hear about your mom's reoccurrence. So nice to hear about what all she has been doing in the meantime though. I agree with you, one does not need to be depressed while going through all this, so if medication is required than so be it. One needs to be in the best frame of mind to fight this thing. I am sending prayers that the new chemo treatments are successful.

Sandra