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18 weekly carbo/ taxol chemo treament - did anyone have to take neupogen vaccines to do the 18 wk regimen

His grace
Posts: 23
Joined: Mar 2013

New to CSN.  Just got port put in yesteday.  Taking pain medication due to the discomfort and pain from the install.  No fever or anything.  Just sore and having trouble turning my head.

Want to see if anyone has experience or is going through the 18 weekly chemo regimen.  Side effects.  Can you work? I am a mother of 2 young children.  Any advise?

Want to prep myself since I am likely to start chemo next week.

lovesanimals's picture
lovesanimals
Posts: 1248
Joined: Sep 2011

Welcome to the board!  My chemo regimen was a little different as I had six treatments of carbo/taxol every three weeks.  I myself experienced a lot of fatigue, loss of appetite and constipation for the first five or so days after each treatment.  To get ahead of the constipation, I started taking Miralax about two days before each treatment and I also took some stool softeners during my treatments.  I was able to work part-time from home but I wasn't getting my chemo on a weekly basis like you will be.  Maybe other ladies will chime in.  My chemo took place during the winter and I worked from home because my immune system was low and I didn't want to catch any cold or flu cooties from my co-workers.  I started losing my hair about three weeks in and ended up losing it all soon thereafter.  I know how traumatic the loss of hair is for many women.  I was okay with it.  And it started growing back about five weeks after my last treatment.

For me, chemo was doable.  Hopefully, you'll have someone to help you with your children during this process.  Please let us know if you have any more questions and keep us posted on your progress.

Kelly

His grace
Posts: 23
Joined: Mar 2013

Thank you Kelly. Your experience helps me to prepare myself for the battle ahead.  I am glad that your chemo treatment went okay.  I too hope for the same.  Also plan to ask my company to work part time from home.

 

 

Noodles1
Posts: 2
Joined: Mar 2013

I too take 18 rounds of Carbo/Taxol weekly and even though I have had side affects, I am doing pretty well. We get a smaller dose because we get it weekly so you should have less side affects then someone getting it every 3 weeks.  I had to stop for 2 weeks because I had gotten strep throat and it decreased my white blood cell count. I have 8 more rounds of the single dose and 3 rounds of the combination Carbo/Taxol left. To date, here are my side affects:

My nose boogers (sorry so graphic) are bloody but my nose does not bleed.

I vomited once, for the first time, this Monday.

Slight nausea started Monday and gone by Friday

Fatigue maybe twice

Getting sick with strep throat

My toes on my left foot is a little numb, but, my Mom dropped a large bottle of pasta sauce on the same foot so not sure if that made it worse....lol. My big toe has always been numb since she did it though.

All are easily tolerated. The anti nausea pills help out tremendously. I will however be happy when my treatment is over.......lol.

I have a Broviak catheter and they take my blood weekly from it before chemo.......you are going to LOVE your port, believe me :o) 

 

 

His grace
Posts: 23
Joined: Mar 2013

Had my 3rd chemo treamtent today  My white blood cell count was border line and was told would not be able to get chemo next wk unless I get neupogen shots (3, one each day).  Did you have to deal with this at all.

 

From your post, it looks like you had no issue with the blood work and was able to get chemo wkly.  Are you on the dense dose regimen.

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

I did chemo dense treatment weekly. I too started with neupogen shots after 4 weeks of chemo. I also had blood transfusions every 4-5 weeks NS THEN ALSO HAD TO SKIP TREATMENTS DUE TO BLOOD COUNTS. i WAS TO FINISH aUG 2012 AND FINALLY COMPLETED 10/2013 about 8 weeks longer. Just remember... when your blood counts stay down....the chemo is still working on the cancer cells even if you have to skip a week of chemo.  I am now 10 months in remission and starting to feel normal again. Hang in there!!! Kim

Noodles1
Posts: 2
Joined: Mar 2013

I too take 18 rounds of Carbo/Taxol weekly and even though I have had side affects, I am doing pretty well. We get a smaller dose because we get it weekly so you should have less side affects then someone getting it every 3 weeks.  I had to stop for 2 weeks because I had gotten strep throat and it decreased my white blood cell count. I have 8 more rounds of the single dose and 3 rounds of the combination Carbo/Taxol left. To date, here are my side affects:

My nose boogers (sorry so graphic) are bloody but my nose does not bleed.

I vomited once, for the first time, this Monday.

Slight nausea started Monday and gone by Friday

Fatigue maybe twice

Getting sick with strep throat

My toes on my left foot is a little numb, but, my Mom dropped a large bottle of pasta sauce on the same foot so not sure if that made it worse....lol. My big toe has always been numb since she did it though.

All are easily tolerated. The anti nausea pills help out tremendously. I will however be happy when my treatment is over.......lol.

I have a Broviak catheter and they take my blood weekly from it before chemo.......you are going to LOVE your port, believe me :o) 

 

 

His grace
Posts: 23
Joined: Mar 2013

Thanks for sharing.  Just had my first chemo treatment this wed.  Carbo/ Taxol.  Thankful that I had no adverse reaction when getting the IV.  Don't know about side effects yet.  I am still new so have to see. 

I am glad that you are doing so well. That is just great.

 

I am getting used to the port now.  It is better than through your veins/ arm.  Lets keep in touch.  It is so much better when we are not going through this alone. 

 

Irene

His grace
Posts: 23
Joined: Mar 2013

Just wondering how you are doing...

 

loving my port.  skipped a wk already due to low white blood cell count.  totally surprised by it.

it was either to take neupogen shots or skipt the wk and since I was put on the spot and totally did not expect it, decided to skip that one wk.

now nervous about each blood test prior to chemo.  5th treatment tomorrow.  reading from your march post, looks like you have had no issues with your blood counts.

hope you are doing well.

 

ptharp
Posts: 190
Joined: Oct 2012

I had the 18 weeks of Carbo and Taxol. I just finished last week. I can tell you what I experienced and what a friend of mine doing the same treatment experienced.  First, let's make sure t is the same one. I had 6 cycles. A cycle consists of 3 weeks for a total of 18 weeks. The first week I had Carbo and Taxol. The second week I had Taxol alone and the thrid week I had Taxol. Then the next cycle it would start over again. The first 3 cycles were a piece of cake. I still got out and did things, even walked a little. I started to feel a little nauseas after the Carbo during the 4th cycle. The 5th cycle is when it hit me. Durng the 5th cycle my blood counts were going down. My hemoglobin would go down and I would fee extremely breathless and my heart would beat hard. I was tired but not the kind of tired you feel after working all day. It felt like every muscle in my body had no oxygen. When I walked up stairs my legs felt like jelly. The 6th cycle was hard too. Lets, see.  I started to loose my hair around the 3rd week of chemo. It is the Taxol that does that. I just started loosing some of my eyebrows after 18 weeks.  I still have some eyelashes. The other side effects that I have experienced are: watery goopy eyes. This is a side effect from the Taxol. Taxol causes your tear ducts to clog. I have slight numbness in my left toe. I was told it will probably get better or go away all together. My Oncologst told me to take Glutemine Powder for that and I think it has helped. I have dry skin. Make sure you use lots of lotion. The Chemo caused me to be constipated so I took a senekot every night and colace. It worked. I gained 30 pounds when my chemo started. This is not unusual. You wll be on a lot of steriods. My biggest complaint and you do not hear the other woman talk much about it is my teeth. My teeth have become extremely sensitive. Even when I eat a salad out of the frdge they hurt. I am told that chemo can cause bone loss so I am thinking maybe this is why my teeth hurt. My Oncologist sad I should wait about 6 weeks before having any surgery done. I have a caterac (sp) that I need fixed and I want the Dentist to look at my teeth. I am very possitive that I will be in remission for a while or hopfully forever, but just in case  I am not I need to get these issues addressed. I hope I have helped. If you have any questions please contact me. You can email me at pamalaraye@hotmail.com if you want.  I had my last treatment last week so this week I am still feeling it. I have my scan next week to confirm if I am in remission. Good luck. Go out and enjoy yourself if you can in the first weeks.

His grace
Posts: 23
Joined: Mar 2013

Pam

 

Congratulations on finishing the 18th week.  And thanks for sharing your experience with me.

 It brings me comfort that someone has successfully completed the 18 wkly treatment and that there is a light at the end of the tunnel for me too. 

 

 

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

I too had the chemo dense treatment for 18 weeks...my lasted more like 26 weeks due to skipping weeks due to low blood counts. You can do it. I did work parttime in the mornings which was a great distration for me while going through treatment and getting use to my dignosis. Kim

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

I had the 18 week dense dose treatment following de-bulking surgery.  I started treatment in Aug 2010 and finished 8 Dec 2010.  I also had a power port fitted and this was brilliant for me (I had the port removed 1 week after I completed treatment).  I worked 3 days a week the whole way through treatment.  I had some fatigue that did get worse as treatment progressed but was manageable.  I kept on top of any sickness by asking for every type of anti-sickness medication which did the trick.  The one thing I swear helped get me thru the treatment was taking Manuka Honey 20+ I honestly believe this kept my bloods at good counts and I didn't miss one treatment.  I also didn't suffer neuropathy.  I did however suffer with horrendous hot flushes and joint pain due to being put in to surgical menopause but I'm now taking Premarin which has been a life saver.  I started to lose my hair after the first 2-3 treatments but had already brought a few wigs and was wearing them right from the off.  I started to lose my eyelashes about half way thru and wore false lashes - a bit of a nightmare but again manageable.  I lost my eyebrows about a week AFTER I completed my whole treatment!!! I'm now just over 2 1/2 years post treatment and doing well although I do still suffer with some joint pain.

All in all it is doable, it is hard work but a positive mental attitude definately helps :)  Good luck and keep us posted.

Michelle xxx

His grace
Posts: 23
Joined: Mar 2013

Thank you Kim for sharing your experience.  You completed it and that is what counts.  I have to talk to manager about having a WFH or more flexible schedule. 

His grace
Posts: 23
Joined: Mar 2013

Thank you Michele.

You and your friend's experience definitely help me to look out for side effects and prepare me for what lies ahead.

I am skinny and lost 14 LBs from having to fast for blood work, surgery and being on a liquid diet after surgery.  Maintaing weight during a chemo is critical. 

Nice to know that you were able to work part time.  I hope to be able to do so.

18 weeks seem like a long time, but posts like yours, kim's and pam's give me courage to start and get through it. 

seatown's picture
seatown
Posts: 220
Joined: Sep 2012

Best of luck as your treatment continues.  Just wanted to chime in -- last July, I too started on the 18-wk schedule, 3 wks on & 1 wk off of Carbo/Taxol.  I had minimal side effects and tolerated it well until about Sept.  At that point I had severe neuropathy, not only in hands & feet but in arms & legs too.  My oncologist said he would have expected it would take longer for neuropathy of such severity to occur.  Anyway, my chemo sched was cut back to 2 wks on, 2 wks off thru mid-Dec.  Neuropathy diminished; never did go away entirely.  I don't work for pay, but thru most of this time I was able to continue in my 2-days-a wk volunteer job. In late Dec. had a nearly clear scan & CA 125 number of 23 (from a high of 2800 in July).  At that point surgery was recommended.  (I had had a hysterectomy 4 yrs ago & upon cancer diagnosis last July, they thought the cancer had metastasized extensively in my abdomen so I went straight to chemo.)  Sure enough, the gyn/onc found microscopic cancer sites in my Feb. surgery.  Now back on Carbo/Taxol, plus Avastin, every 3 wks but at a much higher dose for the Carbo/Taxol.  Have had just one chemo session, & I can tell you this higher dose is a lot tougher to take!  Gonna stick with it for now, tho.

Again, good luck, & keep us all updated.  

His grace
Posts: 23
Joined: Mar 2013

Thanks for your post.  My 18 wk schedule is 18 wk straight if my body, spirit and counts allow for it.  Last wk was my first. 

 

Will definitely keep all of you updated.  All of you have been very encouraging and positive.  Thank you.

mopar
Posts: 1950
Joined: May 2003

Sorry to hear you need to go through this.  But as you can see by all the responses, this is a great place to get support, ideas, and meet new friends!  Will pray for an easy time on this for you, and that the 18-week regimen will be over before you know it.

Monika

Psalm 91 (always brought me comfort during my chemo)

 

His grace
Posts: 23
Joined: Mar 2013

Monika

Thank you for your encouragement and your prayer.  And thank you for sharing Psalm 91. 

Had my second chemo treatement yesterday.  So far, the support of my friends and family and church have been amazing.  And finding this group/ site has been an extra blessing.  I really admire so many of you, the fighting spirit and the kind words.

Thanks

 

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

I did chemo dense, which it sounds like what you are doing. I had to eventually start neupogen due to low counts. About every 4-5th week I also got blood. My first 4-8 weeks went pretty smooth, but over time the chemo does accumulate and can affect your cells and then the need for neupogen is necessary to continue chemo. Use your pain medications because it causes your long bones to ache because it is trying to stimulate your bone marrow. Also on the week you do carboplastin use your nausea medicine routinely even if you dont feel nauseated initially. It usually comes by 30 to 40 hours after a carboplastin treatment. Starting with the nausea medicine early and consistently can help keep it under control. Kim

Murmist
Posts: 5
Joined: Apr 2013

This is my third time at the rodeo. Was diagnosed Nov 2004 with OVCA and did the carbo/platin every three weeks.  Had a recurrance this year and had de-bulking surgery in Jan 13, thsi time I I started out doing the same cocktail.  Carbo/Taxol the first week and taxol only the next two weeks.  I liked this protocol much better as the impact to my body seems to be much less, even with the nuepagen shots, which started the right after the first week.  Dare that immune system! I have been working almost full-time since they released me to drive.  Most days I go to the office, but I do have the ability to work from home, which is a gift.

My faith, my family, my firends and a good attitude is what carries me through.  I live my life one day at a time and I take all the anti-nausea meds I can get my hands on! It is more the fatigue that gets to me.  Last cycle I had a reaction to the carbo, so this cycle I have been switched to Doxil/Taxol.  It seems like between the two of them they all the possible side-effects covered! But as my CA-125 has been holding steady at 8, I will do these last 9 weeks standing on my head!  Blessing and goodluck to all of you

 

Lisa

wholfmeister's picture
wholfmeister
Posts: 258
Joined: Dec 2012

You were in remission for 8 years!  I am amazed, inspired, and hopeful! Thanks for sharing your story.  If you need to stand on your head, call me! I'll come hold your feet up!

His grace
Posts: 23
Joined: Mar 2013

Hi Lisa

Thanks for sharing. I was totally surprised and disappointed when after the 3rd wk, I had to either take a wk off or get neupogen shots.  Since I was not expecting this to happen to early on, decided to take the wk off on the spot.  Just was not prepared for the decision.

Now I am going for my 5th treament tomorrow. A little nervous about my blood counts, mainly the WBC one since you really can't feel it when that is low.  Did you take Claritin or tylenol to ease the bone pain?  I heard it is pretty bad.  Did you give yourself the vaccines?  How big is the boost- lasting 1wk?

So did you take any breaks in your 18 wk regimen?  Trying to figure out when it is good to push through with the neupogen and when it is better to just let my body rest- skip a wk vs. pushing too hard and having more long term consequences.

Murmist
Posts: 5
Joined: Apr 2013

Wholfmeister, I may just take you up on the offer to hold my feet! Yes, I was in remission for many years, however Dec 2011 I was diagnosed with breast cancer and elected to do bi-lateral mastectomy with no reconstruction. The choice was easy for me as I had a long time to think about what I would do. It meant no addtional surgeries and most of all no chemo or radiation. Imagine my surprise when a year later I had another OVCA diagnosis! The platinum based drugs work well for me. I have been so very lucky to have been diagnosed as Stage 1 all three times. The good and bad news with this diagnosis is that I knew what was coming! The biggest change for was having a port put in.  It has made everyhting so much easier.  The blessing for me in all this is that I no longer have the fear that so consumed me 9 years ago.  I know in my heart that I will be successful this time as well and that is how I choose to live my life...as a cancer-free winner.

Lisa

 

love_nature
Posts: 8
Joined: Jan 2013

Hi.

I have just completed my 13th treatment of the same regimen. I stated with taking nuepogen 2 x week and now 3 times. I will try to respond with some things that others have not already discussed.

The injections are a mind control issue. I put something on the t.v. that's engrossing, and tell myself it's not a big deal when I do the injection, "remember it's just a tiny prick". I take Claritin 1/2 hour prior and now that I'm starting to have a little bit of bone pain, I will take tylenol with the Claritin. I haven't had pain prior to this past week. I also do the Claritin injection at the same time each evening, as recommended by medical staff.

If you haven't started already, definitely take L-Glutamine to prevent or lessen neuropathy that can become permanent. Website provider recommened by medical stafff is Vitacost for best price and dosage in powder form. 4500 mg per 3 teaspoons. I mix it in a tall glass of Cran-Grape juice to cut the sandy texture, other juice flavors didn't work as well for me. After the neuropathy started, my Oncologist reduced the Taxol to also help prevent permanent nerve damage. She started me on what she considered an agressive dosage and knew she could cut back if needed. The Carbo dosage was also cut back once.

My platelets have been very low at times so I've had to skip some weeks. There's nothing they can give you for that. Only solution is eating, every day, dark greens; broccoli, spinach, kale, etc. There is an excellent cookbook by Rebecca Katz, newest one is Longevity Cookbook. She's scientifically based and has 2 other cancer books but I like the newest one. You have kids - it's fast and very descriptive of cook/prep times, etc. I'm not a food-person - 1st cookbook I've ever raved about.

As the treatments have gone on, the predicted day when I have fatigue and mind fog has changed. I get treatment Tuesday and it would always be Friday. Now it's sometimes Thursday, once it was Wednesday. So long as my bloodwork is decent, the fatigue only lasts one day. Hope you can get those WFH days.

The things I do to stay positive: -1) I look around me, there's always someone who has bigger challenges, and I feel grateful. 2) very morning while eating breakfast I write down at least 3 things I'm grateful for, which sometimes can initially be challenging. But, once I start it's amazing what comes up and I start my day with a positive attitude (example: grateful for the birds singing, grateful I can drive myself to store....) 3) I find as many ways to cause myself to laugh through the day: friends, books, t.v., children - whatever makes me laugh. 4) Live one day at a time, sometimes one hour at a time.  I couldn't think too far into the future regarding the treatments because 18 seemed overwhelming. 5) A leukemia survivor said to me: "Make every day a good day. It can be done." I admit I'm not successful in making each ENTIRE day good one, but at least PART of each day good. 6) I pray to keep a positive attitude when I'm starting to feel down.

You can do it!

Shannon

 

His grace
Posts: 23
Joined: Mar 2013

Thanks Shannon.  I am getting a blood transfusion along with neupogen shot tomorrow (an 2 more neupogen shots the following days).  My first.  Was told by nurse and dr. that people generally take claritin for neulasta.  I need the above to get chemo #6 next week.

 

Thanks for your advise.  Will look into the L Glutamine. 

 

ONly 5 more to go for you and 13 more for me.....  Had chemo today so I am up

 

 

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

I did the weekly chemos and was to be 18 weeks. I did great the first few weeks, then my blood counts struggled to stay up. So i did neupogen 2-3 times a week. I did have to skip chemo sessions several times and got blood every 4-5 th treatment. I finally finished at about 14 weeks. I look back now and think where I was at last year at this time. take one week at a time and eventually it will be over. hang in there. My thoughts are sending you good carma! Kim

Pamela B's picture
Pamela B
Posts: 108
Joined: Jan 2013

This sounds interesting. I wonder if it is something I can switch to from my aggressive IP regime if I can't continue. I am continually amazed at the generosity and support on these boards. I learn so much. Even that my nose "buggers" are normal! Hang in there, we know you can do it!

Catrich517
Posts: 2
Joined: Mar 2013

I was diagnosed mid-October and had debulking surgery October 31 of 2012. I just finished my 18 week carbo/taxoltreatment plan, just had my CT and my appointment with my doctor to find out my results is tomorrow. My treatments went well, never got sick but did have severe loss of energy and pretty severe neuropathy. I missed two consecutive weeks of treatments due to low white blood counts. As many have stated, I also lost my hair around the 3rd treatment. I now have no facial hair at all BUT my hair has already started growing. I am hoping the neuropathy gets better and my energy returns. Hoping the best for you and everyone else out there!  

sancho42
Posts: 2
Joined: May 2013

I was initally diagnosed with Ovarian Cancer in 2011 and completed 6 rounds of Carbo/Taxol, I found out this past March that the cancer had returned so my doctor started me on dose dense 3 weeks on 1 week off for 18 weeks, however my white cells, the ANC has been dropping very low even after getting Neupogen before chemo because of this my Oncologist is now recommending I try to complete the last three cycles by doing both chemos at high doses every 21 days, same as first line treatment, has anyone else had this problem with the 18 week treatment?

Any information is helpful because it is making me nervous that I can't complete the 18 weeks of treatment.

His grace
Posts: 23
Joined: Mar 2013

I finished 15 of my 18 treatments.  Ended up doing 3 wks on, 1 wk off due to low WBC counts.  Feels great during my wk off.  Treatment #16 tomorrow. 

mamajc
Posts: 22
Joined: Jun 2013

Hi, I just completed nearly 9 cycles of dose dense taxol/carboplatin. I did really well with this type of chemotherapy, but I didn't work since the majority was during the summer. This chemotherapy really affected my bone marrow. I had to have blood transfusions about every 4-6 weeks due to anemia. I also was on neupogen injections three times a week for low neutrophil counts. I didn't have any problems with the injections .. no side effects and I only became sick once when my son gave me an upper respiratory infection (had to be on Z pack).  I missed chemo a few times because my platelet count became too low... but was able to resume after a week off.

I have numb feet and a numb right thumb from the taxol. I have a sensation of walking though and haven't had any falls. I started taking 10 grams of glutamine three times a day and it prevented the neuropathy from progressing further. The neuropathy presented after my first three cycles inbetween my first and second surgery. I also have taken 100 mg Vit B6 daily.

I usually would get really tired about 4-5 days after the carboplatin and taxol. I would just have to lay down during the day. I think it would have been hard to have to work ...

The side effects of the chemotherapy aren't as bad as the cancer. When I first started chemo and my turmors were all over my bowel, I would have to take compazine every 6 hours to prevent throwing up. I would also add Zofran if I had break through nausea. After my second surgery when I had everything (tubes, ovaries, uterus, omentum) removed and tumors debulked, I felt better, and didn't need the compazine as much. However, I would carry a zofran in my purse and use it if I get nauseous.

With the chemo you might find it affect your ability to think. .. I still feel a little foggy. We call it "chemo brain" :)

I was able to stay on top of constipation with miralax every day. I would also use suppositories occasionally. Drinking water really helped.

The worse part of the chemo was the steroids. I had to cut down on the decadron to 2 mg only once a day for three days after the carboplatin and taxol; I would get weepy and anxious on the regular doses.

I also had a reaction to the carboplatin on my 7th cycle. My hands turned bright red and I started itching every where. The last two times, I had to have it in the infusion center at the University of Washington. It had to be give over a longer time period in a facility where a code team was available incase I had a serious reaction. I was able to continue to receive my taxol at the SCCA though.

What helped me the most was staying active and involved in my family life. Even though I would feel tired and weak, I watched my daughter's tennis matches. I even went with my family when they made it to state and we traveled four hours to see her play. I would try to go on walks every day and spend time with friends. I cooked, cleaned, did laundry, and tried to stay on top of things. Sometimes I would need to lay down, but I didn't want to miss out on anything! I wasn't going to allow this cancer to rob me of time with my family or being able to be a mom and a wife!

I just had my last taxol two weeks ago. My eye lashes are just now trying to grow in, and I have one or two little hairs where my eye brows were. I have grey fuzz coming in on my head. I have regained weight :( from the steroids... but it's all ok.. anything to be able to beat this cancer.

 

His grace
Posts: 23
Joined: Mar 2013

Thank you for sharing.  I just finished my 6 cycles last week.  CT Scan 2 wks from now. 

mamajc
Posts: 22
Joined: Jun 2013

 

 

mamajc
Posts: 22
Joined: Jun 2013

 

 

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