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First Chemo Treatment on the 9th

Kaniksu
Posts: 54
Joined: Nov 2015

 

Greetngs all...got my diagnosis two weeks ago and things are moving quickly, will find out Thursday if it has spread ..I guess this will determine the length of the chemo treatments . Feeling overwhelmed a bit nervous about the chemo..Any positive feedback or advice will be appreciated...Thanks

I will find out Thursday what stage and what kind of chemo regime...thanks for the replies.. 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Kaniksu,

I went through several chemo treatments and am now NED (no evidence of disease).

Good luck!

Sten

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

With this disease, moving quickly is a great thing. Make sure to take notes or better yet, have someone go with you to take notes and be your advocate. You will hear a great deal of information and I guarantee, you won't always keep up. 

Let us know your type and staging and chemo plan and we can definitely help you with some advice to make the whole process easier and not seem so overwhelming.  

What tests have you had? If they mention bone marrow biopsy, don't freak out. I had a very good experience with that as have many others.

CSN IS an amazing resource full of wonderful people. They have helped me immensely.

keep us posted!!

Birder

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

 So what kind of cancer do you have? Let us know what your treatment plan will be. Odds are pretty godd that at lease one of us have had it. 

 

Kaniksu
Posts: 54
Joined: Nov 2015

I have a feeling this will be my go to site....I just want to get it started....so I can back to living..

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

Kaniksu,

I still can't believe how fast things moved after I was diagnosed. CT, PET, bone marrow, liver biopsy, port placement, spinal tap, etc.  and now I've finished my 4th cycle of R-Chop with 2 to go. 2nd methotrexate is Monday.  I'm more than half way through! 

You will be amazed a few months from now when you look back At how fast it goes. Good luck! We'll be here.

Sharon

Kaniksu
Posts: 54
Joined: Nov 2015

Thanks for the reply Sharon. My first chemo got moved out till the 18th and I'mreading all I can, wondering if I will be able to work.Do you ? I did find out good news I am stage one and it is not in my bone marrow. Is the chemo as bad as you thought?..And what about your hair...so many questions...Nancy

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Nancy,

First I will say I was stage 4 follicular non-Hdgkins lymphoma. It is likely that the amount of drugs you get will not be the same as what I got. So the following comments could be different since your drug dosages may be less than what I received. 

I strongly recommend you get a port put in, if the dr is not already planning on doing it. My first R-Chop was scheduled before my port was put in so the drugs were given through a line in my arm. Two of the drugs can cause some numbness if they get outside of the vessel so the nurse was being very careful. As she pulled the needle out I'm not sure what happened but I ended up with a bruise, meaning some blood got into the muscle tissue. It was small enough that it did not cause any problems. That was back in January. It took months for the bruise to go away and I can still see a shadow of it on my arm. I did not need to worry about it happening after that because I had the port. 

My hair started coming our just before the second chemo. It was so bad that the second day I had my husband shave my head. 

The chemo itself is not bad in that there was no pain or discomfort. The one exception is the first day of Rituxan. I was given Tylenol & high dosage of Benadryl to avoid the side effects of the Rituxan. Inspite of this I did have an alergc reaction to the Rituxan that first time. After that, no problems. I also found out that the high dosage of Benadryl can also cause restless-leg syndrome. Getting up and walking around seemed to less the effect. 

Part of R-Chop is Prednisone. For me I was taking 100 mg for 5 days, starting the morning of chemo. It definitely made me light-headed which wore off as the day went on. By the evening of the 3rd day I felt like I had so much energy I could have cleaned the whole house and then some. It seemed to wind down a little by the 5th day. On the 6th day I felt fine, no light-headed feeling because I was off the Prednisone. Day 7 morning wasn't too bad but by the afternoon all I wanted to do was sleep. Day 8 the same except I ahd to see my oncologist. She informed me that the "wrung" out feeling crashing from the Prednisone. Went through this for the 3 cycles. The 4th cycles the high didn't seem so high. The 5th & 6th cycles there was almost no high. A co-worked who is a cancer survivor warned me that I would be more tired with each cycle of chemo and this was part of it. Again, for me, with each cycle of chemo the count went down but did not come back up to where they had been before that cycle of chemo.

My dr recommended a stool softner because the chemo can/will cause constipation. One thing I learned from someone online was to start taking it the night before chemo. It helpd to aovoid some uncomfortable days after chemo. 

Good luck to you and to Sharon too. 

Kaniksu
Posts: 54
Joined: Nov 2015

Thanks for the good information Lindary..I do have my port. I guess the it's the not knowing what to expect is the worst..Are you finished with your treatments ? I will definitely ask her about the stool softener. I am trying to do as much as I can for my husband now, because I'm pretty darn sure I won't feel like doing too much then.I have atrial fibulatin that I manage with drugs..just hoping the chemo doesn't throw me back into afib...time will tell l guess I need to practice living in the moment...nancy

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Kaniksu,

I finished the R-Chop in May. Then there was teh CT scan. I thoguth all was great until the Dr told me that the mass in my abdomen (swollen node) that started it all was still larger than it should be. So Aug-Sept_Oct was RICE treatments. This is a 3 day event and it requires staying in the hospital and is repeated every 3 weeks. After the last one I had a fill range of tests to prepare for Stem Cell. So this was CT & PET scan, bone marrow biopsy, heart & lung. That is when they found they culd not use the t-cells from my system because of some abnormal cells. So for now my Stem Cell Transplant is kind of on hold as they do more analysis of the cells, I get another marrow biopsy and they find a donor. 

In the meantime I am going to work every day. It is keeping me busy although this weekend I have to do some actual store shopping for Christmas, for the things I can't relly get online. 

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

Kaniksu, 

I am working through my treatment, but am lucky enough to be able to work from home. I work for a group of ophthalmologists managing their billing office, so most of it is done via remote computer.  My husband picks up and drops stuff off for me when needed. They understand if if I have to logoff and rest, and it keeps me away from sick people. Although there are days I probably could work most of the day in the office, my WBC count is hard to keep up, and the last thing I want is a secondary infection.

I have had no nausea at all and hope it stays that way.  Tiredness would be my biggest complaint at this time. I'm in the hospital right now and just finished a methotrexate treatment, which is prophalactic.  I am stage 4, DLBCL.  #5 chemo on Monday so the double whammy week does tire me a bit more. I agree with Lindary, the prednisone week is nice and then the crash. But once I knew what to expect it was easier. Stool softener is important. miralax is wonderful for me.

i did lose my hair right before my second treatment. I also got to the point where I had it shaved. Hair was everywhere once it started coming  out.  I'm not much of a turbin or scarf person, so I bought several hats at Kohls. They have a lot of cute ones this time of year. i prefer ones with brims, and a cute scarf to keep my neck warm.  I also have a wig that is ok, and plan on getting a shorter one to ease into my hair growing back if all goes well. 

I try to stay positive, it's hard at times especially when I think of the future and what it might bring, But staying positive certainly makes me feel better. 

sharon

 

Kaniksu
Posts: 54
Joined: Nov 2015

Thanks for your reply and the encouragement about work..I work for a rural Forest Service ranger station and they are all so supportive.I will be able to work from home also .I know it will be good for me to keep my mind occupied..Please stay positive.. I am finding right now that is the best for me and everyone around me... I got a couple of wigs so I'm getting ready. I should have tarted chemo this week but it got delayed a week..so, next week. Please take care of yourself. Nancy

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Sharon, Glad it all went well so far. I never thought to check on Kohl's for hats and scarves. I am glad you mentioned that is where you went. The feeling of being tired is on-going. By my 6th R-Chop it was very hard getting into the office a week later. What made me go was knowing that I usually felt better by the end of day than I did in the morning. I realized later it was the walking from my car to the building to my desk. I could have parked closer to the building but once I realized that the walking had more to do with me feeling better than anything, I kept parking in my usually spot and walked. 

As to staying positive. All I can say is that when something negative occurs don't try to ignore it or push it away. Deal with it and think about what you have learned from the experience. Share with others: family, doctors, nurses, friends. (Not necessarily in that order.) By sharing wiht otheres you will either effect change or learn more about the process/cancer. What ends up happening is you turn the negative into a small positive. 

 

God luck to both of you.

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

Everyone reacts differently...and the same to chemo.  I lost my hair about 2 weeks after my first R CHOP infusion. I had some really lousy nausea symptoms, and terrible constipation, but got support from my oncologist to just set up my own regimen for a laxative. I've found being proactive there has eliminated nausea and even the need for nausea meds. I went with good old Phillips Milk of Magnesia, I'm regular, and feel good after 3rd infusion.  I'm due for three more rounds and now feel much more confident about my post infusion time. I can back off the laxative toward the end of my 21 day cycle, but I start it again nightly the night before my next infusion. That program works great and I feel so much better.

overall, for me, chemo has been quite an adventure, but not a real bad one. My energy levels are down and on a RARE occasion I may have a sleepless night.  The Prednisone (the P In CHOP) didn't agree with me so I'm now taking dexamethazone instead with much fewer side effects.

Neulasta shots cause some people bone aches, but I was fortunate to get good advice to take Claratin to counter that and it worked great. 

i hope you can find that your anticipation of chemo is greater than your reality of chemo.  Stay on here and keep asking for advice. Everyone here has been where you are and ready to help!

Best wishes!!!

Kaniksu
Posts: 54
Joined: Nov 2015

I am supposed to be on some special meds for a week prior because I have afib and if they don't get here by Thursday I will be delayed agai..fingers crossed..i appreciate the advice about the constipation..that's a side effect I did not expect to hear about..This just really isn't a fun time for any of us right now...looks like you have a great pal with your dog to help get you through it..take care and I'll be checking back in on everyone..

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Kaniksu,

How are you doing? Did you have the chemo on the 18th?  

Kaniksu
Posts: 54
Joined: Nov 2015

Thanks for asking...it ended up being a long day..they thought it would take six hrs but ended up 10 hrs, because I had a small reaction..the nurses were great and got me out of it, so they just slowed down the infusion..This site and everyone's comments totally got me prepared for everything I experienced...Consipation,check, bad nausea,check, bouncing off the walls from prednisone, check...now I am expecting  the prednisone let down...Just pretty rough on me for the first few days. Only one nausea pill today and actually went in to work for 6 hrs today. My daughter came yesterday and shaved my head... I must say I will Never complain about the hair God gave me again..I'm hoping to go to the office tomorrow for a while, and then telework. I'm curious to find out if they increase the dosage with each treatment? I forgot to ask.. oh, birder if you read this since you were the one to comment on the constipation, I will now recommend Smooth Move herbal tea...I will drink a cup of it the night before the infusion and as long as I am on the nausea pill.... Best to each and all of you as we go through this together...nancy

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I was lucky in that I never had nausea but constipation yes. Although that was a problem before I had chemo. I'll have to look for that tea. 

With your next treatment you should not have any reaction to the Rituxan so it should go faster. With each treatment they can speed up the Rituxan a bit as long as there is no reaction. I am getting Rituxan every other month now and it takes about 5 hours. 

Glad to hear all went pretty much as expected. Enjoy the holidays. 

Linda

Kaniksu
Posts: 54
Joined: Nov 2015

I am amazed you didn't have nausea....mine was severe for three days even with the meds..Good to know about no reaction next time. I did have the doc prescribe some numbing ointment for the numbing shot. How long have you been going through this? One of my very dearest friends passed away from this 15 years ago....I'm thinking positive that the treatments have really advanced since then...Making myself a fancy purple cap to wear for Christmas...Keep in touch and enjoy your family....nancy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Nancy,

What drug combination are you receiving ?  I saw were someone asked you, but do not see an answer from you (sorry if I somehow missed it). I did see where two replies mentioned their own experiences with R-CHOP, the most common first line NHL therapy. Is your therapy R-CHOP ?  Knowing this will determine the best replies to your quesions.

Ranger work is so cool !  The building in your pic looks like some of the old ranger facilities here in the foothills of the Smokey Mountains where I live, built by the WPS and CCC around the President Roosevelt/ World War II era.  The Smokies -- most popular national park area in the United States.

 

For my part, welcome, and may your chemo experience be relatively problem-free, and most of all, successful,

max

Kaniksu
Posts: 54
Joined: Nov 2015

yes RChop is it...I felt so good on Monday that I worked for six hours..but now...forget. It, I was in and out of bed for the past two days..Is that normal? Smokey Mountains are beautiful too!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Nancy, 

I did r-abvd, which does not have Prednisone; that is, there was no stimulant-steroid given with my treatments, so I am not sure how the 'bouncy-ball" cycle of CHOP works.  I have read here were a few people on abvd did get steroids, but it is not ordinarily done.

I would say if tired, sleep. If feeling energetic, get up and do stuff.  Your body will tell you what it is in the mood for, or able to handle.  SInce CHOP is the most common lymphoma treatment, a lot of people will hopefully share how their experiences on it went.

I slept 15 or more hours a day for six months.  Work was a remote memory...  Thankfully, I did not require inpatient care.

.

Sal0101's picture
Sal0101
Posts: 132
Joined: Sep 2015

Kaniksu, 

I also had a reaction to the rituxan on my first infusion.  Rigor as they call it! uncontrollable shakes. My daughter is a nurse practitioner and it even scared her.  Once they slowed down the drip I was much better.  I was very nervous for my second treatment and made sure they went slow, so my sessions were quite long.  By my 5th treatment I was out of there in 4 hours.  tHey kept telling me it would be the first one only....they were right. 

As far as the nausea, I never did have it, but if I even suspected I might I take a Zofran, and that's only for the first few days after treatment. 

Sharon

Anonymous user (not verified)

i had an extensive course of Rituxan only. Once a week for 8 weeks then every 8 weeks for 28 months. On my first infusion I experienced a severe drop in blood pressure. I blacked out and awoke to Doctors performing chest compressions. The dose was slowed to a trickle and the infusion Was completed in 10 hours. After that everything went well. I suffered leg and joint pains which went away quickly after my last infusion. All in all I think my many infusions of R were more boring than painful. I had percocet for the first four infusions and benadryl with acetomenophen for all of them, so no pain. I strongly recommend R only to those for which it is appropriate -  low bulk tumors and no vital organs immediately threatened.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I started my treatments in Jan, 2015. That was 6 cycles of R-Chop, one every 3 weeks. When that was not 100% successful I did 3 cycles of RICE. To me the day of chemo is boring except for that first time with Rituxan. The Prednisone is another matter. As Max said, when tired you sleep or rest, when enegrized get up and do stuff, is right. Prednisone will charge you up for a few days. You can get a lot done then. When you stop taking it and crash, you need to sleep. The crash usually hits 20-24 hours after you last take it. I found that taking a nap the day after I stopped taking it seemed to lessen how tired I was the next 2 days but I was still tired. 

 

As too how long we stay in remission, each person is different. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

I read GK's account of Rituxan and recalled my experiences with it, approaching six years ago...it seems like 1,000 years ago now, for some reason.

R-ABVD is all IV (none of the drugs are a pill), and all are given on the same day: once every two weeks.  The drugs were always given in the same order, and always the Rituxan first.  The only reaction I can positively link to it was chills, which lasted till the bag ended.  This went on for six months (12 sittings); chills every time. Rituxan gives some people muscle pain, but so can two of the other drugs in abvd, so I cannot know if it was the Rituxan or not, but I had severe muscle pain for nearly six months, from the second infusion until after the last. The reaction is called Flu-Like Syndrome. Some people get fever with it, but I did not. The link attached says that the chemical effect of the drug makes the body think it is being attacked by the flu, and the pain results.  I believe r-abvd could be given to prisioners in Gitmo, and they would give up any information they had.

I noticed a box on wheels at the nurse's station one day and asked what it was. The infusion RN said "A crash cart."  Some of these drugs can put a person down. The nurse seemed to watch me more during the Rituxan bag, but two of the other drugs were vesicants, and administered by a push-pull cylinder. I asked him why it was not given via drip, and he said, "This stuff cannot spill. If it spills, we have to call DHEC, and set up an exclusion area until it is cleaned up."

I got to the cancer center at about 7:30 AM, and left around 4:00 PM each of the twelve sessions, or an eight-hour day.  I do not recall any variation in how I felt between the day after getting an infusion or ten days later; it was all identical.

The first-ever chemo was Mustargen -- Mustard Gas, the same stuff used against troops in WW II. And leukemia and lymphomia is what it was first used to treat. It is still in common use today, mostly in MOPP, and some other combinations.  It is restriced in handling and use by International Chemical Warfare laws.

No wonder there are dozens of possible side-effects for each of these lovlies.  If a sniveling coward like me can get through it, though, anyone can.

Flulike Syndrom:  http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx

Mustargen: https://en.wikipedia.org/wiki/Chlormethine    

http://chemocare.com/chemotherapy/drug-info/Mustargen.aspx

 

.

 

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