In Limbo

Cstoutz2

I'm a 30yr old white female. I was diagnosed with Alk-pos anaplastic large cell lymphoma back in October. I have just finished my 6 rounds of CHOP. In one month I will have a follow up PET scan and will know more about where we stand with things. The doctor has already mentioned doing radiation to the tumor I had on my leg. Personally I don't want to undergo more chemo and don't like all of the long term effects of radiation. Has anyone had this type of cancer? What insight can any of you provide to me. Up to this point in my life Ive been very active and never taken any medicine. I'd like to look toward a hollistic approach, any thoughts? 

 

 

Rocquie

CHOP

Welcome to the group, Cstoutz2. I have a different lymphoma so naturally my treatments have been different. I did have CHOP chemo with Rituxan (R-CHOP) and now I am on Rituxan maintenance for 2 years. 

When you get the results from your PET, you and your doctor can discuss continued treatment, if needed. Some people opt for "watch and wait", I don't know the protocols for ALCL.

I completely understand your feelings about previously being active and healthy. Prior to my lymphoma diagnosis, I had never been sick a day in my life. I went to the gym, I walked every day, I practiced yoga, I had (and still do) a very healthful diet. I took no medications and never had any kind of surgeries. I had never even had an xray, except dental, much less CT scans and PET scans. Diagnosis, such as ours, is shocking to say the least.

I strongly believe in alternative and complementary approaches to medicine and always have. But I urge you to use caution when dealing with cancer. Cancer is a big bad disease with big bad consequences. It plays for keeps.

If my doctor suggested radiation for me, I would not like it and I would probably seek another opinion. But if that was recommended for me, I would take it despite any future side-effects. Cancer has an ultimate side-effect I don't want right now. 

Best wishes and feel free to join any of the discussions here.

Rocquie

 

illead

Rocquie said:

CHOP

Welcome to the group, Cstoutz2. I have a different lymphoma so naturally my treatments have been different. I did have CHOP chemo with Rituxan (R-CHOP) and now I am on Rituxan maintenance for 2 years. 

When you get the results from your PET, you and your doctor can discuss continued treatment, if needed. Some people opt for "watch and wait", I don't know the protocols for ALCL.

I completely understand your feelings about previously being active and healthy. Prior to my lymphoma diagnosis, I had never been sick a day in my life. I went to the gym, I walked every day, I practiced yoga, I had (and still do) a very healthful diet. I took no medications and never had any kind of surgeries. I had never even had an xray, except dental, much less CT scans and PET scans. Diagnosis, such as ours, is shocking to say the least.

I strongly believe in alternative and complementary approaches to medicine and always have. But I urge you to use caution when dealing with cancer. Cancer is a big bad disease with big bad consequences. It plays for keeps.

If my doctor suggested radiation for me, I would not like it and I would probably seek another opinion. But if that was recommended for me, I would take it despite any future side-effects. Cancer has an ultimate side-effect I don't want right now. 

Best wishes and feel free to join any of the discussions here.

Rocquie

 

Welcome

Hi and welcome to the group.  I totally agree with Roquie.  My husband is the one who has cancer and like you it was totally out of our vocabulary......until.  The medical field has come a long way in their treatment of cancer.  There used to be horror stories about chemo etc. but they have learned so much more about it.  I have a friend who has breast cancer.  She decided that she did not want chemo and that she was going to handle it "naturally".  In 6 months she had a tumor the size of a baseball.  She is now having chemo to shrink it it in hopes that they will be able to remove it and is very ill.  I am a strong believer in alternative medicine and we rarely went to the doctor, including our kids, but like my husband always says "You can't take a knife to a gunfight."   And like Roquie says, wait to hear what the docs say and continue doing research and hopefully someone will be more familiar with what you are dealing with and give you more insight.

Hoping the best for you, Becky

COBRA666

My 2 cents

Stay away from the hollistic approach. Do not take any chances with this crap. That's just my 2 cents worth. John

allmost60

Welcome

Hi Cstoutz2,

  My cancer is different than yours and I had a milder chemo treatment..CVP-R. with no radiation. I also completed a 2 year maintenance of Rituxan a year ago in February. Right now I am in remission and feeling good. I agree with everything the others have said and feel once you have the results of your PET scan you will have a better idea of what's facing you if continued treatments are necessary. One thing I might suggest is to get a second opinion if you are not comfortable with doing more treatments. Eating healthy and keeping stress at a minimum in your daily life is always a good thing. Please share back when you know more and we will be happy to assist and support in anyway we can. My heart hurts when someone so young as yourself is dealing with cancer. I hope you have a good support group with family and friends. Take care and God bless you.

Love...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63-in remission)

Cstoutz2

In Limbo pt.2

Since my original post I have completed the 6 prescribed rounds of chemo which was 3days on every 3 weeks. Must say I'm glad I've got that behind me. I have also been rescanned and there are NO signs of cancer showing which is also a positive. The doctor and radiologist have both agreed along with many of their partners that it would be advantageous to do radiation to the initial tumor area which was just above my knee and not near any joints and obviously there arent any major organs nearby. I'm elated to have the worst of it behind me!! The only immediate side effects that I've experienced are fluid retention and swelling in my legs which finally after a week of fighting through it the doctor gave me some fluid pills which has seemed to help. He said it was from my anemia and to mostly wear compression socks(not cute), elevate my legs as high as I could stand it and when they were down the more I moved the more it would help filter out everything SOOO I went to Disney World walked around an entire day through the pain and swelling road all the ride I could fit in and much to my suprise my legs have been 90% better ever since(I'm going to say it was Disney that solved the problem). Aside from the normal fatigue and some peripheal nerve damage which I had early on during chemo I've been feeling pretty good! 

Does anyone have any wisdom to offer on radiation? 

I wish everyone the best through their journey and welcome any and all comments. Being I had a very rare type of lymphoma the doctors have even been perplexed at times but it always gives you hope hearing others stories

Rock on! 

Shoopy

Cstoutz2 said:

In Limbo pt.2

Since my original post I have completed the 6 prescribed rounds of chemo which was 3days on every 3 weeks. Must say I'm glad I've got that behind me. I have also been rescanned and there are NO signs of cancer showing which is also a positive. The doctor and radiologist have both agreed along with many of their partners that it would be advantageous to do radiation to the initial tumor area which was just above my knee and not near any joints and obviously there arent any major organs nearby. I'm elated to have the worst of it behind me!! The only immediate side effects that I've experienced are fluid retention and swelling in my legs which finally after a week of fighting through it the doctor gave me some fluid pills which has seemed to help. He said it was from my anemia and to mostly wear compression socks(not cute), elevate my legs as high as I could stand it and when they were down the more I moved the more it would help filter out everything SOOO I went to Disney World walked around an entire day through the pain and swelling road all the ride I could fit in and much to my suprise my legs have been 90% better ever since(I'm going to say it was Disney that solved the problem). Aside from the normal fatigue and some peripheal nerve damage which I had early on during chemo I've been feeling pretty good! 

Does anyone have any wisdom to offer on radiation? 

I wish everyone the best through their journey and welcome any and all comments. Being I had a very rare type of lymphoma the doctors have even been perplexed at times but it always gives you hope hearing others stories

Rock on! 

Progress

I love to read about good news and certainly seems you've got some!  I haven't had radiation so I'll let other's comment.  Just keep on truckin'!

Karl

Unknown

Shoopy said:

Progress

I love to read about good news and certainly seems you've got some!  I haven't had radiation so I'll let other's comment.  Just keep on truckin'!

Karl

Wonderful!

I am so happy to hear of your progress! When it comes to relying on holistic medicine I can only say "Steve Jobs". It is effective in some cases and certainly offers an emotional or psychiatric benefit for those who have faith in it. Faith heals. However for primary therapy I am betting my life on mainstream medicine. I did the health food, organic, food supplement thing for many years. It didn't help. I have cancer. Most of my friends who ate normally are fat but none of them have cancer.

Rocquie

Cstoutz2 said:

In Limbo pt.2

Since my original post I have completed the 6 prescribed rounds of chemo which was 3days on every 3 weeks. Must say I'm glad I've got that behind me. I have also been rescanned and there are NO signs of cancer showing which is also a positive. The doctor and radiologist have both agreed along with many of their partners that it would be advantageous to do radiation to the initial tumor area which was just above my knee and not near any joints and obviously there arent any major organs nearby. I'm elated to have the worst of it behind me!! The only immediate side effects that I've experienced are fluid retention and swelling in my legs which finally after a week of fighting through it the doctor gave me some fluid pills which has seemed to help. He said it was from my anemia and to mostly wear compression socks(not cute), elevate my legs as high as I could stand it and when they were down the more I moved the more it would help filter out everything SOOO I went to Disney World walked around an entire day through the pain and swelling road all the ride I could fit in and much to my suprise my legs have been 90% better ever since(I'm going to say it was Disney that solved the problem). Aside from the normal fatigue and some peripheal nerve damage which I had early on during chemo I've been feeling pretty good! 

Does anyone have any wisdom to offer on radiation? 

I wish everyone the best through their journey and welcome any and all comments. Being I had a very rare type of lymphoma the doctors have even been perplexed at times but it always gives you hope hearing others stories

Rock on! 

Limbo

C, thanks for coming back to update us on your progress. Congratulations on completing your chemo! And what wonderful news that your scan showed no evidence of cancer. 

I am so happy that you felt like spending the day at Disney and that it improved your leg pain and swelling. 

I did not have radiation but many others here have. I hope someone comes along soon with some feedback for you.  Meanwhile, you could try doing a site search? Maybe you can find some older posts of help; I often have.

Again, congratulations on your progress. I'm sending you a big hug. . .

Cheers,

Rocquie

 

Max Former Hodgkins Stage 3

COBRA666 said:

My 2 cents

Stay away from the hollistic approach. Do not take any chances with this crap. That's just my 2 cents worth. John

Agree

I agree with John on this. "Holistic medicine" is snake oil and pseudo-science.  It should be sold only out of the back of a covered wagon, while Cher's old hit "Gypsies, Tramps and Thieves" is played in the background.   It is the fare of New Age dreamers and Tom Cruise fans.  What is good for you today will have skull-and-crossbones warnings on it in five years, with people screaming that it kills --fast.  I am not a bumpkin; my B.A. in philosophy had me focus on formal logic and the philosophical assumptions in scientific methodology .  I learned a lot of additional physics as a Radiological Controls officer on a sub during my years in the Navy also.

I heard a report on the radio last week that a massive, Ivy-Leauge study has concluded that saturated fat has no effect on rates of heart disease. I will try to look up a print copy for everyone, but the results do not surprise me.  Here it is: Brought to the public's attention in the New York Times, the articlle from the Journal Annals of Internal Medicine. The largest studey EVER on this subject finds that there is not just not a little evidence, but that there is NO EVIDENCED WHATSOEVER that saturated fat increases heart disease !!

http://well.blogs.nytimes.com/2014/03/17/study-questions-fat-and-heart-disease-link/?_php=true&_type=blogs&_r=0

I eat healthy, but am not a vegan-Nazi. I do not run to the opposite extreme, with a bacon and doughnut diet, because that would be idiotic also.  I have never smoked at all, or drank very much.   Lymphoma is unrelated to diet, by every account ever written.  I would get a second opinion, and then have the radiation if the second doctor confirms the treatment plan, if it were me. In general, avoiding mixing radiation with chemo is a good thing if you can (it can increase later development of leukemia), but sometimes you just have to receive both.

The great George Carlin summed it up years ago, in his "In the News" report: 

"This just in from medical research:   Scientists have confirmed that saliva causes stomach cancer, but only when swallowed in small quantities, and over a period of many decades."

I hope your treatments are 100% effective. I know these decisions are difficult.

max

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