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Relapsed..Kellie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Kellie,
I hope you don't mind that I copied and pasted your most recent post to a new discussion. You have been a huge help and always one to help and in case others in the group missed reading about your relapse, I thought they should know. I'm so very sorry about your relapse Kellie and feel sad knowing you will be dealing with so much in the months to come. I just want you to know that I will be keeping you in my prayers and holding good positive thoughts that the transplant will go smoothly for you. What you said about our new normal has really struck a cord with me and I plan to talk to my doctor in great length at my next R-maint infusion. I really believe that by now I should have alot more energy than what I do, and deep down I feel like my body just isn't right. When I read where others are back to good energy levels, I always wonder.."why don't I feel that way?". Anyways...I'm sorry you are in the hospital right now, but it's better to get the ball rolling so that you can be NED again. Hang in there and know you are in my thoughts and prayers. Much love...Sue (FNHL-2-3A-6/10)

November 18, 2011 - 5:33pm

Hematologist...

Sorry this took so long. My oncologist is also a hematologist, an endocrinologist and a rhumatologist. She's got all of the blood cancers and most of the autoimmune diseases covered in her Fellowships.

I relapsed a month a go and am now being followed by a transplant team for an autologous stem cell transplant. I am currently in the hospital, just completed day one of my first round, out of three of RICE. In October 2010, when my tests showed NED, my body continued to feel "off" with extreme sudden fatigue, horrible pain which required more non and narcotic analgesia than when I showed active uptake of my LBCNHL. But, I tried to adjust to my so called new normal. My oncologist informed me that it just takes longer for some of us to get our energy back. I now say that your new normal, may be that the disease is actually still somewhere in your body; you just really don't know 100%. Do not take any days for granted. Continue with all follow up testing. Most importantly, if you still do not feel like you are beginning to have more good days out balance the poor days, do continue to let your doctors know. Someone will find something it indeed it is still there

Feel better all,
Kellie
LBCNHL IV-B 6/2010 6 rounds R-CHOP= ned as of 10/2010
Relapse: LBCNHL IV-B ; plan 3 rounds RICE followed by harvesting and transplanting of my stem cells ( autologuos stem cell transplant).

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Kellie

I am so sorry to read about your relaspe. I always hope that when I don't hear from friends, it's because they are living their life and doing well.

Your road ahead will be a tough journey, but I feel so hopeful that you will do just fine.

We all followed Beth during her similar journey, so I have an idea of what it will be like.
I'm sure that Beth will be in touch with you soon.

We are all here for you.

I'll keep you in my prayers and I am sending you all positive and good wishes.

((Hugs))
Lisha

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

My love and prayers go with you on this journey.

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

really sorry to hear this, I to feel so off, and it worries me. Praying that your treatment goes well, Vinny

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Oh Kellie I am so sorry to hear about your relapse! I know the road ahead of you is a terrifying one, but you CAN do this. I think the hardest part for me sometimes was the RICE chemo, it totally kicked my butt. I am very glad to hear you're doing an auto though. The restrictions won't be so extreme as with an allo.

I sincerely hope that when they do the collection that you can also get it done in one day. The machine they use for the apheresis is pretty impressive and loud. It's hard to sit there for so many hours, but they do it in a room with a toilet so you don't even have to leave :)

It'll take some time to get your pre-chemo done and then all the testing first. Don't use all the time to freak out if you can. Take heart, it will be ok. Do you have someone who can be with you 24/7 for a month? I'll admit sometimes my sister and sister in law really got on my nerves. Where are you having it done? Do you live close to the hospital?

Oh, the best part?? You qualify for a disabled parking permit for 6 months. With winter coming, you'll appreciate it. I did have to stay away from my cats and that was very difficult.

If you want to talk, pm me your phone number.
I will hope to hear from you soon!

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Oh, yes! It's a butt kicker alright! Fatigue like I've never known. I figure a "Food Chewing Factor" into my meals now. Yes, I did make that up so no need to google it! The FCF is the amount of energy it will take me to chew the food. Rice Krispies has a much lower factor than a hamburger! I seriously do not always have the energy needed to chew a bagel, over toast for instance!

My next fun time is the shower. They want me to cover my line insertion site. Why? Just cause you can die from infection, especially at the port site. And if that isn't enough, I have well water. This fact alone can push me over the edge! I can't be the local septic tank police woman too! Oh, then to actually get in the shower with low red blood cell counts. My goodness. Is there a way I can move my bed into my upstairs walk in? Don't forget, this handy-dandy tri port needs to be flushed daily by.....me! I got two units of red cells today so I'm saving my energy for a shower and as a special treat for those who will be near my personal space on Thursday for lab draw, a shampoo! A real spa treatment!

I'm teasing. This is very tough but I am tougher! The things, the simple things that we take for granted can be very complex and involved when in the midst of treatment. But, over the alternative, I'll opt for continuing my treatment plan.

Hugs and prayers to all! Love, Kellie

Beth, when will I need someone to be with me for a month, 24/7? I'm treated at University Hospital, in Syracuse, NY. The Onco units are great. The 6 bed transplant unit looks to be state of the art with negative pressure rooms.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hey buddy...I feel the same way. I can't put my finger on it, but feeling "OFF" is exactly how I feel. Sometimes for no reason I'll get a bit dizzy when I stand up and then at times (not always)I get shortness of breath and my heart races from simply walking out to the mail box or coming up the stairs from the laundry room. Not to mention the achey joints and just the overall lack of energy. It will be a year Dec 14th since my last chemo(CVP-R) and of course I get the Rituxan infusion every other month, but others here that are on the Rituxan maint don't seem to be having the stuff going on that I have, so I'm always wondering if the cancers slowly growing again. I just HATE this feeling of being "OFF". Well..I guess time will tell. I get my next scan in April, so I guess I'll just have to wait it out until then. Hang in there and be sure to let us know if anything changes with you. Keeping my fingers crossed that all will be good for both of us and hopefully this "off" feeling is nothing. Love,Sue
(FNHL-2-3a-6/10)

truckingalong
Posts: 444
Joined: Aug 2010

Kellie, my thoughts are with you and am in awe of your fighting spirit...

Love,
Liz
HL4Bcell,8/10-Remission-2/2011

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
I don't get dizzy but I had my last chemo treatment in Sept. last year and I am still not 100% energy wise either. I do not think anybody is. I get R every 6 months and I really think that has something to do with it all. John

truckingalong
Posts: 444
Joined: Aug 2010

Yeah, I had off days every month too and it sure is scary. It is like no warning - suddenly I felt a wave of rush or something and/or shortness of breath and fast heartbeat - that is why I slowed down and then I realized I should be doing more. But every time I go to the gym to do weight training even though it's only few pounds, I feel better and stronger - doing this 2 times a week. Hope to go there more often as my work schedule allows it. But I keep putting off to schedule a visit to my primary doctor - don't remember when the last time I saw him so I gotta kick myself to do that. I am tired of medical visits!!

But anyway, I still wonder what is going on in my body when I have off days...

Positive thoughts everyone,
Liz

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I also can say that I have experienced all the above issues from time to time. I worry about it at the time, but it soon passes. I don't know if our previous poison sessions have anything to do with it, but I can't help but think it does. Is this our new normal, I think so.

Sometimes I think all the treatments did so much, but I seem to forget occasionally that without them I wouldn't be here now. Is it worth it? Absolutely. A few tired days, a couple dizzy spells, yep I can handle it.

I can't hardly make myself make an appointment to see my reg doctor anymore as my onc does things so much better lol. Maybe it's a relationship thing, I don't know.

Liz, question for you my dear. Did your hair come back curly? Mine did and I actually went yesterday and had them all cut off. Amazing huh? I wanted my hair to come back and it felt so good to get it chopped off again LOL.

truckingalong
Posts: 444
Joined: Aug 2010

Hi dear Beth,

I will have to have someone take a pic of me to update the look of my hair!

My hair grew 3 inches and it seems to go from really straight to slightly wavy or soft wave. I was hoping for more curly for the fun of it - oh well. Hair Cuttery suggested using shampoo and conditioner that thickens hair and that helped. Always had hair close to my shoulder and now it is short and everyone loves it so I will keep it short. Only that I want hair to grow is over my ears because of the cold weather - huh!

I feel like I am one year old and that feels good, grins. Hope your recovery continues to treat u well.

Hugs
Liz

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hi! I also hate the "new" me, but I keep telling myself, it's a lot better then being in treatment!!!!! lol Have a Great Thanksgiving!!!!!!!!! Vinny

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

It took me 2 years to feel normal again. I still am a little off balance. I actually think people think I always have been:) The 150,000 IU's of Vitamin D a week really help. My oncologist want my Vitamin D level to be 60. 30 is low normal. Much love, Joanie

onlytoday's picture
onlytoday
Posts: 601
Joined: Jun 2010

Hi all,

Kellie, my prayers are with you. I am sorry you are facing this battle but I know you'll be okay. Will be waiting to hear that you kicked this to the curb!!

In regard to Sue's and your comments about feeling off- me too. My primary care and oncologist put me back on disability. I was trying to work 3 days a week but it didn't work out as I have yet another infection ( *upper respiratory ) that is not responding to antibiotics. They thought I had pneumonia but it isn't- thank goodness.

Generally I haven't felt the same since my dx in May 2010 with tx in September 2010. At that time I had not felt right since Dec 09 and thank GOD for my primary care doc who listened and was a bit like a bulldog - not giving up until she got to the bottom of things. She again is on the case with my oncologist so I feel comfortable with that anyway.

I HATE CANCER. I pray for a cure to this dreaded disease. What a life changer. There, had to get that out one more time. :)

Love and prayers to all,
Thanks for the support,
Donna

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

I really appreciate all of the prayers and good thoughts that you are sending my way!

Sue, I don't mind that you bumped my post up. It may sound strange, but it was difficult for me to post my relapse. It may be that posting my relapse makes a relapse more real for others. Maybe it was kinda like I was feeling that I let all of you down too. I know that sounds strange. Generally I like to be the bearer of Good Tidings!

My labs are low and I go in for two units tomorrow morning.

I promise to write more later this week!

Please keep praying for me. Kellie

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Kellie,
I'm really sorry to hear about your relapse, I really haven't started myself with any treatment so I can't really imagine how you're feeling. I'm keeping you in my prayers, please take care of yourself. xoxo

Sincerely,
Liz

Danco_man's picture
Danco_man
Posts: 14
Joined: Nov 2011

Been following this and other posts about SCT for relapsed Lymphoma patients. I am one myself.

First diagnosed with DLBC in 2007. It was aggressive stage IV-so they used R-CHOP and I stayed in remission until Sept. of this year when I relapsed. This time they couldn't tell whether it was agressive or not because it was in my spleen and no biopsy was able to be done-but after one round of chemo the spleen returned to normal and after the 2nd round I was in total remission.

Normally in these circumstances (aggressive B-cell) the oncs opt for SCT-but since I'm now somewhere "in the middle" (not aggressive...not indolent)I've been told by several specialists that I am a good candidate for Retuxan maintenance instead. I'm having a stem cell collection tomorrow -just in case- but pretty much have decided (I think) to NOT have the SCT NOW. Instead will have them frozen and do maintenance for 2 years instead.

Was wondering if anyone has gone down this road? Please let me know what your experiences have been since I can still make the choice to do the FULL transplant- but quite honestly would prefer not to if there is a better option. Unfortunately there are NEVER any guarantees that come with these choices.

Thanks. Looking forward to hearing back from someone w/ some good advice.

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