You would think that after 5 rounds of chemo, I wouldn't be so afraid of my last round tomorrow, but I am!
What is it that I fear?
I still have fear...not as bad as the first couple of rounds of chemo, but it's there in the back of mind that something could go wrong. I think it's perfectly normal to be fearful. I'm sure in a week or two you will be breathing a sigh of relief knowing that first line chemo is now behind you. Good luck tomorrow...everything will be fine, and then your done!! Yeah!!! Best wishes...Sue (FNHL-2-3a-6/10)
Now that I'm sitting in the treatment room, getting my tequilla drip, I'm excited that it will be the last one. Of course, there is maintenance with Rituxan every 2 months for 2 years! Thanks for your post and words of comfort! I really appreciate it!
Hi I had rituxin for 2 years and finished that last Sept. We are blessed to live in an age of so many options. Tequilla drip huh? I wasn't offered that:):)
Thanks for your wise words! We truely are blessed to live in the time of treatments that help us survive. I made it through the last chemo, I'm making it through the neulasta pain for this round, and I will definitely make it through the 2 years of Rituxan maintanence! Life is good!
Your welcome Jen...thats what we're here for is to support each other...through the bad times AND the good times. I've been doing my Rituxan maint since Feb 14th of 2011...one year down with one more year to go. I'm amazed how fast the time has gone by. I've done just fine with my bi-monthly infusions, but I still get a little antsy come time to get each infusion...plus, I go in every month to get my port flushed, so I always feel kind of tethered to the clinic. It will feel weird when it's all done, but I'm certainly looking forward to that day! You should be home and done for the day now, so enjoy your freedom from chemo before you start your Rituxan maint! :) Take care...Love Sue (FNHL-2-3A-6/10)
How awful is it getting the port? I am just having my first visit with the onocologist next week. Terrified of not knowing how all this treatment will begin. I am so scared of being deathly sick and I am 68 but not ready to give up life. I am in the crying and breaking stage of this lousy disease. Help. love Carol
I am not on as much as I used to be . I jump in only when I feel I can help someone that is in the exact same position I was in at one time. It was about 2 years ago I had the same questions. The port is not as bad as you may think. You are totally in a deep sleep and when you wake up it is there. You have to be careful after you first have it put in. You don't want to be rubbing it since your skin has been cut to install it just under the skin. It is quite handy to have when you are getting your chemo. It is not painful,but does feel a little odd sticking up in your chest. You get used to it after a while.
Being scared is perfectly normal. Everyone on here was scared as well. What we have is not a death sentence. It is all treatable. It may or may not come back. If it does then its treatable again. There are new ways coming all the time. It has even been refered too as a chronic disease. NHL is not curable at the present time as far as I know. I do believe they are getting closer though. The chemo has a tendency to zap your energy and to feel tired as the treatments progress. In my case my butt was dragging by the 5th treatment. We all made it thru and you will as well. Its no walk in the park but doable. John
John, I was so thrilled to see your reply today when I got up from a sleepless night. I am glad to know I will be asleep. That for me is half the battle. You are obviously fine and no lymphoma. Can you take time to tell me your symptoms and what you went through? How old are you. I ask that only because being 68 and having already had breast cancer 10 yrs ago with no chemo and this is not the breast cancer going to the lymph node I felt in the corner of my eye. Then, there are occassional attacks of A Fib. I am terrified all these other health problems will make me a death sentence. I am a young 68 and love life. I have had thoughts of downing a bottle of pills and ending it before I am a vegetable in pain in the hospital or nursing home. Only good thing is I have a wonderful husband and son who love me dearly and are at my beckon call. I hate this for them.................! So glad your well, mending and don't have come to this site very often. It means your well. God Bless an I hope we can keep in touch. Thanks Carol
I am 63 and was diagnosed 2 years ago. It was by accident when I went to the urologist for an annual check-up. He said he likes to have a ct scan done every 5 years to check the kidneys and bladder and all the rest of the plumbing. Everything came back normal Except he saw enlarged lymph nodes in the abdominal area. He said he had an idea what it was and sent me to the oncologist. It was confirmed to be small cell NHL. I had no symtoms at all. No night sweats or weight loss. I was told thousands of people have lymphoma and never know it. It was explained that lymphoma starts in the lymphnodes and usually stays there. Other cancers start in the organs and sometimes reach the lymphnodes. No matter where the organ cancer goes in the body it is still considered the organ cancer cell. All the cells look different under the microscope.I was scared to death. Then came the port. It was nothing like I thought it would be. It was a rather easy thing. I will continue this on another post. Afraid it will not let me post after all this typing. John
I was set up for R-CHOP ,but instead was given R-CVP every 2 months. It wasn't bad the first couple of treatments,but after that I was getting more and more tired. By the 5th treatment I felt like a bus had ran over me. I crossed the finish line on my knees. In the end it was worth it. Your reaction may be different because we are all different. I was said to be in remission in Oct.2010. I am now on a 2 year Rituxin plan. I go for my last infusion tomorrow in my 3rd round of treatment. I have another round in 6 months and it will be the last one.My diagnosis was NHL follicular type- Stage 4 with no symtoms grade 1. The stage is not anything to be overly concerned about because it is treated the same. If it were an organ cancer then the stage is almost always the key.Anything else I can help you with,just let me know. John(NHL-4-1A-5-10)
Hi Carol and welcome to the site.
You'll find lots of wonderfully supportive folks here.
I had Diffuse Large B Cell Lymphoma (primary in the small
intestine area) and completed chemo Oct 2011. So far so good.
I ditto everything John (Cobra) said.
I would also add that attitude is very important too.
That's why I tell people that attitude and humor are free
weapons in this war.
When I first started this rollercoaster, I was very scared and had
visions of being so sick from chemo, etc. It's not really that way
anymore. They have so many ways to prevent or manage side effects.
It was no picnic but it wasn't as bad as I had envisioned.
One of the doctors made a comment to me: "You can take two
cancer patients who look exactly the same on paper - and the one
with a good attitude usually does better....". So, you're going
to be human, have worries and fears and that's okay. Feel free
to come here and share/vent, etc. Just don't pull your hair out -
too many people here need it ! :).
Again, welcome and please keep us updated.
Hugs and positive thoughts your way,
You are such a kind and helpful person. You are always there to help anyone in need.
Always and always, you take the time giving advice and encouragement.
Even though your DX is different than mine, our struggles and questions are the same.
I was DX in Sept 2009 when my small bowel perforated with marginal, stage 1, low grade B cell NHL. Sub type Extranodal marginal zone B cell Lymphoma. remission hopefully Jan 2011?
My question to You: Since our symptoms started in the abdomen area, do you ever have a fear
of taking aspirin, aleve, or any other pain medication? Of course if needed. Only
because these medications can cause stomach bleeding.
Blessings and prayers to you. Maggie
I usually take tylenol or non-asprin (non-NSAID) over the counter
medications. But, I recently read there is evidence that
an aspirin regimen (like for the heart) may also help with
A search on Google for "aspirin preventing cancer.." will bring up lots of
articles. I plan to discuss this with my oncologist next visit.
I had ulcers in the small intestine and tested positive for Heliobacter
so I try not to take NSAIDS very often.
I think it's best we discuss with our doctors.
Thanks so much for your lovely comments.
I too saw this news about aspirin on TV. Like you, I will check with my PCP and oncologist.
I do try and not take Aleve too often. Only in an emergency.
Thank you for your response. Love Maggie
Thank God your out there. I loved your picture with the dog. I have three angel ones. I knew you were a good person. All this started with a small lump in the corner of my eye. Doc. said it was nothing probably had it all my life, I knew better my eye was closing a bit. 2nd doc. said I worried too much. I asked for a CT scan and she told me she wouldn't find a thing and I was a nervous person. This lady an optomotrist. She was angry I pushed her for one. Then, the thing turned out to be a mass. A biopsy showed it to be this lymphoma. When I got the call and it was blurted out soooooooooooo cold I nearly fainted. My PCP was stunned at the diagnosis. He is making the onocology appt. for me and I pray it is soon as it can be. I am so upset I have seen so many friends fall with cancer and suffer so I have thought of the easy way out...............! I don't want my husband and son to suffer. They are both wonderful souls. As I said my 68 years may hinder any progress. Past breast cancer ten years ago was a hoot no chemo but this cancer did not come back. I have had A-Fib in the past and I worry about my heart with all this. WORRY DID I SAY WORRY. CRAZY AT THIS POINT AND ALL THIS WAITING. How long did you have to wait for treatment? Do they do CT Scans Mri's etc. I was not given a stage for this. I hate to think of losing my eye or worse this going to my brain where treatment is nill I bet. Thanks for welcoming me and stay in good health forever. Hope to see you again and hear from you. Carol
I read your post this morning and it immediately took me back to June 2010 when my PCP told me I had cancer. My husband was with me at the time and to say the least, we were shocked, as I had been perfectly healthy with no health issues. Earlier in January I found a medium size lump on my left groin along with a smaller one on the left side of my neck. Went to my PCP, had an Ultra sound done which lead him to the decision to just watch the lumps and wait until my scheduled yearly physical in late May,where we would then re-check the situation. The groin tumor got a little bigger from January to May, so he then decided to do another Ultra sound which now showed multiple smaller tumors had developed in my groin area. He then sent me for a CT-scan which showed not only tumors in my neck and groin, but also multiple tumors in the back of my abdomen and another one in the clavical area. He scheduled a surgical biopsy..(removal of the largest groin tumor) and after pathology was done we then knew for sure what we we were dealing...hence my diagnosis of Follicular Non-Hodgkins Lymphoma-grade2-stage3-typeA. I had a BMB done which showed no bone involement,which then put my stage at 3 instead of 4. As John said, what stage we are is not as important as other types of cancers, because treatment for stage 3&4 is the same. I did a one month period of "watchful waiting", but in mid August a new small lump appeared under the left side of my jaw, so my Onc decided it was time to proceed with chemo...CVP-R. I did 6 rounds, finishing in Dec 2010 and then started a 2 year regimen of Rituxan maint therapy receiving it in a bi-monthly infusion. Just finished my first year with one more year to go. Last week I had my yearly CT scan and things look good. Will know more next Tuesday when my Onc goes over the results with me. I'm scheduled for my Rituxan infusion that day also. I know you are scared Carol, as we all were when first diagnosed. The treatments are difficult, but as said in above testiments, totally do-able. Please keep coming back to the group for support...this place and the wonderful people here were a life saver for me, and still are. Take care and I will keep you in my prayers. I am a little younger than you at 61, but have read many stories of folks in their mid 70's that have come through this with excellent results. Keep the faith and stay as peaceful as possible...easier said than done, I know. Stress does however make our immune system work harder, so try as best as you can to keep stress at a minimal level. We are here to help and can get you through the stressful times. Best wishes and keep in contact. Love...Sue
The pic with the dog is my sister from several years ago. We lost
her just before Christmas 2011 to brain aneurysms. I love animals (dogs
especially) too but my sister had a wonderful gift with them :).
I've posted pictures of her here since she passed. Kind of keeps her close to me
in a way :).
Sorry about all the craziness with your eye doctors in the past. It's important
you have a good oncologist and good cancer team. Often people here suggest
getting second opinions just to be on the safe side.
Waiting - it's horrible I know. I think it was probably about 4-6 weeks after
meeting my oncologist then we started treatment. Anxiety was really bothering me
(couldn't sleep well, felt a little panic, etc.) and my doctor precribed
anti-anxiety medication (Atavan) and that really took the edge off.
Your oncology team will probably run more tests and stage the cancer for you.
My lymphoma was not in the eye area so treatment options for you may be different
from what I experienced. During my treatment (6 cycles of R-EPOCH), I had scans
about every other cycle and at the end. They did PET and CT scans at different times
(sorry I don't recall when) during treatment to monitor progress. I responded
well to treatment. I go every 3 months for CT scans and oncologist follow up.
Later that will change to every 6 months and then every year assuming no recurrence.
Advice often given is to try to take it one day at a time. Sue is a wealth of
good advice and she's right about stress.
I know there are others on this site who have had lymphoma in the eye area. Hopefully
some of them will respond as well.
Hang in there and please know you have lots of support here.
Hugs and positive thoughts,
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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