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NHL Follicular Stage III

Bluemanx's picture
Bluemanx
Posts: 6
Joined: Jul 2015

Had PET scan, Power Port and bone marrow test in the last week.

 

Start chemo tomorrow, but don't know what to expect.   Can you give information ?

 

Thank you.

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

Bluemanx,

Welcome to the Board from a fellow cat lover (and rescuer for many years)....

You gave a pretty good summation of what you have going on, but it would be helpful for you to list your pending chemo meds, approximate age, and general health.

For late-stage NHL I suspect you most likely are slated for CHOP, R-CHOP, or EPOCH, but there are other possibilities.  These were not my drugs, but most of the folks here have experience with them, since NHL is a lot more common than HL.

Lymphoma is very treatable, and although treatment can be rough, most side-effects end soon after treatment ends, and cure rates for Lymphoma are among the highest of any cancer, so you have much cause for hope and optimism,

max

 

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Anonymous user (not verified)

I have stage IV follicular. My tumor burden was low but widespread, including bone marrow. I was able to get a full response with Rituxan only. Have good reason to think its is back so I may be doing chemo in the  near future. This is a very treatable condition. Lots of options. I wish for you and fully expect a long happy life. This is just a rough spot in the road.Good luck.

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

I was told last Dec I had NHL. later told it was 4th stage, follicular. Had a fairly large tumor in the abdonmen. Had 1 treatment pf CHOP because insurance had not yet approved teh Rituxan. Then had 5 treatments of R-CHOP followed by a treatment of just Rituxan so I has 6 treatments of CHOP and 6 of Rituxan. CT scan says everything looks good but a few nodes are enlarged yet. Read a lot of articles online. There are some good sites for lymphoma. One thing I learned is not to panic because it was stage 4. With the blood cancers it is easy to spread since they are in systems (blood or lymph) that contain fluids. There also seems to be a lot of good drugs out there for treatment. 

littlemac's picture
littlemac
Posts: 22
Joined: Nov 2014

Hi. I know what it is like to wait for a treatment plan and try to learn about your new diagnosis. I was diagnosed with Folloucular Lymphoma, stage 4. It was in many Lymph Nodes and in my blood. I went through 4 rounds of chemo with Bendamustine (sometimes called Trenda) and Rituximab. I had PET Scan after the 3rd round and it showed complete response, no signs of tumors. I am on a Maintenance Therapy of Rituximab for the next 2 years.  

As others have said, trust and listen to your doctor. But do not hesitate to get another opinion or seek out another doctor if you do not feel your doctor is right. Learning about my disease helped me cope. Don't be afraid to let people know, I found 2 wonderful co workers that went through it that became friends that I felt comfortable asking them about ANYTHING. Write down questions, don't hesitate to ask your doctor about anything and call or email them about concerns. 

Keep in mind that it is 2015 and we are fortunate to be living with cancer now- medical advances and understanding of this disease have come a long way. My doctor explained my cancer as a disease that I would always have and needed to monitor it much like Diabetes. That comparison puts it in perspective for me. 

I really wish wish you the best. Rest, cry, talk when you need to. My thoughts and prayers are with you.

 

Bluemanx's picture
Bluemanx
Posts: 6
Joined: Jul 2015

for the encouragement and kind words.   I am confident in my hospital and doctor,   I have been through one treatment, only five more to go !

 

My doctor and staff have an online hospital where I can ask questions, check on lab results, appointments.  Available 24/7,

ET2015
Posts: 1
Joined: Jul 2015

You might expect loss of appetite, constipation and feel weak.

What you eat is VERY important during treatment. My doctor told me to eat lot's of peanut butter, I thought at first of this to be kind of funny, but it helped. Seems like the peanut butter worked like a lining for my stomach against all the medicine. Don't eat too much of it! Blueberries, broccoli & kiwi mixed with milk and ice. Strawberries, peaches, plums & apples. You might not want to eat because of the effects of the chemo, but please, eat, always eat because  if you don't, you will get very weak. Lentils or broccoli soups. Have an apple at hand everytime you are going to get lab tests done, eat it afterwards. Yogurt & lot's of water while you are taking the treatment is very good. Your taste buds might change, things that you never thought you liked eating will taste delicious. Happened to me, I never liked broccolli. After each treatment, drink lot's of water and of course, pray to God. He is real and will help you just by asking Him.

Bluemanx's picture
Bluemanx
Posts: 6
Joined: Jul 2015

Exactly the way I feel tired do not want to eat.  Grapes taste great, helps with dry mouth.  

 

Thank you for all your delicious suggestions,  maybe I'll make a smoothie with yogurt and fruit.

Bluemanx's picture
Bluemanx
Posts: 6
Joined: Jul 2015

Bone marrow found free of lymphoma !

 

 

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

Blue,

 

The negative bone marrow biopsy most likely means you are stage 3, worst case.  Or less.  The doctor will tell you your stage any time you ask.  I have spoken with a lot of oncologists, both my own and while taking other patients for appointmens.  All of them have agreed:  "Eat what you feel like during treatment."   

Bluemanx's picture
Bluemanx
Posts: 6
Joined: Jul 2015

FYI, I'm 65, female.  My doctor said I'm in stage III, based on my PET scan.  

I'm confused, can I go out of the house while I am in treatment ?   I am retired with a good support system.  Thanks for listening.

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

Bluemax,

Some people work during treatment, but most do not.  Treatments and the severity of the disease vary so wildly during chemo that what a given individual experiences may look nothing at all like what others do.  Initially I left work to start chemo, and after aboout two months, went back, because it seemed so mild.  Then, I virtually fell apart, couldn't get out of bed, had insufficient energy to do much of anything. If you had told me a month earlier how I would feel then I would not have believed it.  My doc said I could do whatever I felt well enough to do....  "Chemo Fog" later kicked in, and I was often too confused to drive, so realize that that is a potential issue also.  Food fetishes are common, and I lost all sense of taste for several months.  I lived off of breakfast drinks for a time.  A friend who had lymphoma decades earlier told me he went five months able to tolerate only pot pie -- he ate nothing but pot pie for many months.  Others enjoy whatever they ate befoe sickness.

My neighbor had lymphoma a year before I did, but his meds all had to be taken as an inpatient, for six or eight months.  Except to go to the hospital for his three day sessions, he never came out of the house during those months...my wife and I in fact thought that he had died until we saw himone morning, being carried to the car by his roommate.  He was emaciated, had gone from around 300 pounds to about 140. We were shocked, could hardly believe it was him.  When I went back to work after about eight month's out, many coworkers did not initially recognize me, and were stunned at my appearance.  Becaue I worked n areas that required security access, a few actually asked who I was ! But others patients have little change, don't lose weight, and so forth.

One thing about going outside is that several medicines require that you stay out of direct sunlight for extended periods. And others cause prickly heat, or miserable itching and sweating, which could be a problem in these summer temps.  I guess just conservatively test what you can handle, but I would not force the issue; rest is better for most than trying to prove that we can conquer the world.

max

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

I was told I had stage 4 follicular lymphoma. Did 6 sessions of R-chop. In reality the first sessions was Chop because the insurnace had not yet approved the Rituxan. Then 5 sessions of R-Chop followed by 1 of just Rituxan. So my schedule was Chemo day I did not work. The next 4 days with the Prednisone I worked from home as much as I could. The 3 days after I stopped taking the Prednisone I slept. Of these days the first was a Sunday. The other 2 I worked from home. Then the next 9 work days I was in the office except for days I had a medical appt. I found that being in the office actually energized me. 

During treatment I did otherwise limit shopping to the day or two before the next session. Family & friends could stop by if not sick and hadn't been around sick people in the last week. At work people were told that if they thought they didn't feel well on a day I was coming in, they should work from home. The only person who had to do this was my boss. I was very lucky to be able to work the schedule I did. The worse side effets I had were from the Prednisone and that was mainly when I stopped taking it. The last 2 sessions I felt more tired than with the previous sessions. I just made sure I got as much sleep as I could. 

You have to judge for yourself what you feel up to doing and what you don't. Good luck with the treatments.

littlemac's picture
littlemac
Posts: 22
Joined: Nov 2014

Hi!  I hope you are feeling well. I am 47 and was able to work through chemo, but it was challenging. I had Bendamustine & Ritaximab treatments once a month for 4 months. I felt fine through the first 2, but it was more difficult after the last 2. I found that I had to come home from work and go to bed at 6 pm at about 8 days after chemo. Even so, I was lucky.

Listen to your body and doctor. I am a teacher and I did not get sick. Wash hands, rest, stay home when you are down. It is not a bad idea to avoid crowds, just in case.  

Good Luck. 

 

 

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