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girliefighter's picture
girliefighter
Posts: 194
Joined: Mar 2013

First and foremost, my apologies for being M.I.A for almost a month now

I thought it would be kinda cool to have a link open to any and all that can update us on where you are with your diagnosis, treatments or remission< this is partly due to laziness or lack of time to research my LYMPHOMA family on here.

So any and all patients and caregivers please add your updates, so myself and others can keep track of you

XXXOOO

Carie

girliefighter's picture
girliefighter
Posts: 194
Joined: Mar 2013

I am back to work and school full time after 6 treatments of CVP-R, last treatment August 1st, 2013

Had little to no side effects while undergoing the treatment, just sleepy and weight gain(30lbs)

After my treatments ended I  got symptoms of neuropathy, that were relieved by 600 mg of Alpha Lipoic Acid-Thanks Rocquie for the suggestion. Laughing

I have also been losing alot of my long hair, it has thinnned to about half of what I had pre-chemo..No explanation for this other than I finally put down my fighting gloves probably a bit too soon. I have contemplated getting clip in hair extensions, just to make it seem thick again....Hey Vanity saved my life, so don't judge meWink..lol

I will have my first Rituxan maintenance treatment in about a month and truly am not looking forward to it, I have kinda enjoyed no weekly visits and blood draws for the last month- I have finally felt free

on Sept 21st, 2013 my friends have arranged a party or Cancer Funeral as I like to call it, to mourn that part of my life and celebrate it's "passing"<----basically get together and get "chocolate wasted"

allmost60's picture
allmost60
Posts: 3151
Joined: Jul 2010

Hi Carie,

 What a good idea! I had a physical with my PCP about a month ago and everything checked out fine. I had a sinus infection at the time, but we finally got that taken care of with 3 different kinds of antibiotics. I didn't think I was ever going to kick it! All is good now and I'm feeling great. We have been on vacation since Sept 6th and won't be home until the 29th. The fishing is fantastic, catching our limit of King salmon every day..(2 each). Weather is gorgeous and the view is outstanding from our cottage on the mountain. I've tried to post pictures, but can't get any to show up...don't know what I'm doing wrong...was always able to post pics before???   Anyways...I will check in as time allows. My love and best wishes to all of you.  Sue Cool

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 62) In remission

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Carie,

As I'm sure you know, hair normally returns to approximately it prior thickness after chemo, but it can take months.  Occasionally, the color will change a bit, and sometimes the texture also.  My hair used to be extremely coarse and frizzy (like my personality), but since chemo ended four years ago, it has been like baby hair .   Neuropathy usually clears with time also, although some cases, like mine, never do.  

Fortunately, Rituxan never affects hair, that I am aware of, or neuropathy either. 

max

NANCYL1
Posts: 225
Joined: Jun 2012

 

Girlie:

My diagnosis was last year re B cell Lymphoma.  Have had Rituxan infusions every six months since then.  Nothing else.  Will have the last set in Nov. of this year.  My oncologist told me that I would not lose my hair, and I haven't.  My side effects were not too bad, mainly tiredness, but not overwhelming.  Some loss of appetite, not including appetite for chocolate.  

If all goes well, I will be checked every six months in the future.  Fingers crossed.   Had a scare several weeks ago; doctor was worried and sent me out for a PT-Scan.  Had to wait for an entire week for a response.  Everything was OK, so I will soldier on.

Think I will go out and buy some chocolate!

Nancy

 

 

 

Shoopy
Posts: 210
Joined: Jul 2013

Carie,

Love the Cancer Funeral idea!

I just finished my 3rd salvage/rescue treatment of R-DHAC last week.  We found out just before the treatment my PET scan showed that I am "95% cancer free" according to the doctor.  If all goes well, I should be heading into Stem Cell Transplant in late October.

I was suppose to get 6 treatments of R-CHOP but the DLBCL continued after two treatments so they switched me.  I haven't had any sickness or huge issues with any of the treatments.  A little 'chemo fog', fatigue, etc.  I'm sure the STC will change that...but I'm ready!

Karl

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

"Hang on S[l]oopy, Sloopy hang on !" -- Refrain from 60's rock ballad.

You have the same fighter-spirit as Carie, Karl, and are a winner as well.  The one who eats the most chocolate wins !

max

Shoopy
Posts: 210
Joined: Jul 2013

I thought it was "Hang on Snoopy"...all these years!  And if all it takes is eating chocolate...I'll win!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

http://www.youtube.com/watch?v=DO2Y2sGZ1dk

World's worst-ever lip-sync music video.  They all look like they have a chocolate buzz to me .

max

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Hi Carrie, great idea, this sort of roll call to get updates from everyone. And you are just the person to drum up enthusiasm for it.

I just completed my 3rd Rituxan maintenance, which I go for every 2 months for 2 years. In between, I go for a port flush. Like you, I would just as soon not have the reminders but if it keeps the lymphoma at bay, then worth it.

It is exactly one year since I first became sick and began my discovery of what was wrong with me. A year ago, I was waking up at night with drenching night sweats, running almost constant fevers, having a terrible cough and difficulty breathing. I was getting weaker and weaker. I would take my temp at 5 AM, record 102 degrees, then shower and go to work. I kept going to my family doctor and taking more and more antibiotics. Finally, she ordered a chest xray, and that started the ball rolling fast. I can barely believe what happened to me in one year's time.

I recently went to a kidney specialist due to continuing low electrolyes. Tests show that my kidneys are working just fine. I have "reset osmostat" meaning I now have a "new normal" (that term again) level of sodium in my blood that is of no clinical significance.

I also recently went to a Naturopathic Physician I hadn't seen in several years. He recommended various supplementation to help in my quest to bring my health back to my baseline. He approached my goal in several ways, addressing energy, mood, detoxing my body from medications and radiation from scans.

Last but not least, I have hair!  It seems to be taking forever to grow back but I no longer worry about head coverings. I think I have less gray than before, but honestly, I had colored my hair for so many years, I don't really know. It is becoming very, very thick. And it is starting to get wavy. I look like I have a hip short haircut. I call it Chemo Chic. I have bought a few new items of clothing because this time last year I weighed 40 pounds more than I do now.

I look forward to hearing from some of our other members. And as always, it is wonderful to hear from you, Carie

Hugs to all,

Rocquie

 

 

MChantal's picture
MChantal
Posts: 94
Joined: Apr 2013

Rocquie, I adore your "Chemo Chic" term! I can guarantee your are rockin' that new short hip haircut. You go!

It is quite strange to think about, from the start of your symptoms to present day. Did all of that really happen within 1 year? I know I think about that constantly, just 9 months ago from the first onset of symptoms did we realize something what wrong... Looking back now, I could keep myself in the butt! Because those drenching night sweats that Kyle exhibited were horrific and yet, we were so nieve. However, no one expects to hear that cancer is in your body or that it is even possible.

Interesting journey, God sets out for all.

You sound like you are doing well though and I am so happy for you. You deserve the best and so much more!

Love,

Michelle

onlytoday's picture
onlytoday
Posts: 585
Joined: Jun 2010

Carie,

What a great idea!  Nice to hear everyone's updates.

I am in a Partial Remission since October 2012.  Had 4 tx of Rituxan in Oct 2010.  Then had 6 tx of Bendamustine/Ofatumumab ending last October.  Have a scan and blood work in October. Get results October 15, expecting a GREAT report.  Feel good, hair finally thick again.  It thinned a lot with treatment.  Neuropathy is improved.  Memory is still an issue. Doing what I can for that, puzzles, games and online courses.  I also can't seem to fight infection very well. Had cellulitis 4 times this summer from simple bug bites - it was awful.  Everyone is blaming it on my immune system.

All in all doing great, expecting my first grandchild (It's a boy!!!) in March!!  Best medicine in the world- the love of family.  I just don't have time to be sick anymore that's all there is to it!

Gotta run.  Time for a piece of mid day dark chocolate !  Smile

Hugs,

Donna

Dx 05/2010  Nodal Marginal Zone NHL, Stage IV    PR 10/2012.

 

GKH
Posts: 288
Joined: Jul 2012

I was worried about you during your absence! Glad to hear things are well!

Physically i am doing pretty well. I have been on a Rituxan monotherapy since being diagnosed with Stage IV Grade 3A FNHL in October 2011. I had 8 weekly infusions and then began maintenance once every 8 weeks for 2 years. My last scan was in March and showed "two small but potentially viable tumors" in my retroperitoneal area. I also have a tiny "spot" on my thyroid and another on my left lung. Then there are the vision problems which the opthalmologist looks at every three months. I will be having another scan, probably in October. My next infusion is in early October then one in December and hopefully the last one in February (20 something total. I lost count). My main symptoms are severe fatigue, swollen salivary glands, severe leg pains (chronic - come and go) headaches and restless legs. i am trying the lipoic Acid supplement.

I spent 10 weeks at my cabin in the mountains over the summer, mostly just relaxing with my dogs. My mother died in April and I am dealing with her meager estate. The last thing I expected was boundary disputes with the neighbors! Its a mess but almost settled.

I have never had a port. Rituxan is a breeze during the infusion but the side effects really slow me down. I feel really bad for a few days after each infusion then slowly improve till its time for the next one. I don't look sick most of the time and most people think I am much younger than my age. Then sometimes I turn pale and can't walk well. Thats the nature of my illness.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

What kind of eye problems are you having? John

GKH
Posts: 288
Joined: Jul 2012

I was worried about you during your absence! Glad to hear things are well!

Physically i am doing pretty well. I have been on a Rituxan monotherapy since being diagnosed with Stage IV Grade 3A FNHL in October 2011. I had 8 weekly infusions and then began maintenance once every 8 weeks for 2 years. My last scan was in March and showed "two small but potentially viable tumors" in my retroperitoneal area. I also have a tiny "spot" on my thyroid and another on my left lung. Then there are the vision problems which the opthalmologist looks at every three months. I will be having another scan, probably in October. My next infusion is in early October then one in December and hopefully the last one in February (20 something total. I lost count). My main symptoms are severe fatigue, swollen salivary glands, severe leg pains (chronic - come and go) headaches and restless legs. i am trying the lipoic Acid supplement.

I spent 10 weeks at my cabin in the mountains over the summer, mostly just relaxing with my dogs. My mother died in April and I am dealing with her meager estate. The last thing I expected was boundary disputes with the neighbors! Its a mess but almost settled.

I have never had a port. Rituxan is a breeze during the infusion but the side effects really slow me down. I feel really bad for a few days after each infusion then slowly improve till its time for the next one. I don't look sick most of the time and most people think I am much younger than my age. Then sometimes I turn pale and can't walk well. Thats the nature of my illness.

illead's picture
illead
Posts: 484
Joined: Aug 2012

Yes, I think this is a great idea too.  Bill was diagnosed with Mantle Cell Lymphoma July '11.  His chemo was Bendumustine/Rituxan.  He is now on Rit maint every 2 months.  He has 3 left which will end in Feb.  He was "officially" in remission Feb '12, but we believe it was sooner than that as Feb was his first CT scan since his dx.  He remains in complete remission and feels and looks great.  No side effects.  The doctor is very happy and encouraging.  He says MCL is not as ominous as it was a short time ago, and even says "if" it comes back, we have a lot of ways and new meds to try.   So we remain very optimistic, but................it's still cancer, once it touches your life, it never goes away.  We just keep it on the back burner hoping it stays unlit. Laughing  Congrats Donna on your new grand baby "the best medicine"

       Our best to you all, Bill & Becky & Gracie too

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

Still kicking. I'm done with chemo and had a pet scan about a week ago. Should talk to my onc next week about the scan. I'm back at work full time. only side effects so far are my hands and feed go numb and still tired. Almost forgot I put on 40lb still working that off I was so sure weight would be lost ha ha. 

jonathan

girliefighter's picture
girliefighter
Posts: 194
Joined: Mar 2013

Jonathan,

Glad to hear you are done and back to work, that is amazing! I too have 30 lbs of awesomeness to get rid of, I was eating like it was an olympic sport thinking at some point I wouldn't be able to eat nd would lose all my weight...hahahaha..not the case..As far as the hands and feet, get yourself some Alpha Lipoic Acid 600mg from GNC, it is a miracle...made mine stop in about two weeks...Praying the scan results are nothing short of SUPERIOR

jessica melanie
Posts: 2
Joined: Sep 2013

Good Evening all. I hope Ive found the right place to join in.  I am 43 years old. I am married and have 2 teens!  I was diagnosed with Hodgkins Lymphoma  nodular scleroris Oct 2012. i have completed 6 rounds of ABVD and 15 radiotherapy sessions.  PET shows Im clear.  I'm struggling a bit with.. whats next for me. I feel like there is more to life than the path I've been on. I think Im seeking more spirituality. How we are all connected.  Looking for good books to read. I also feel like my friends and family dont get me at times. While I have great support systems their advice isnt resonating with what Ithink I need...does this makes sense?  Thanks for your time. 

jessica melanie
Posts: 2
Joined: Sep 2013

Good Evening all. I hope Ive found the right place to join in.  I am 43 years old. I am married and have 2 teens!  I was diagnosed with Hodgkins Lymphoma  nodular scleroris Oct 2012. i have completed 6 rounds of ABVD and 15 radiotherapy sessions.  PET shows Im clear.  I'm struggling a bit with.. whats next for me. I feel like there is more to life than the path I've been on. I think Im seeking more spirituality. How we are all connected.  Looking for good books to read. I also feel like my friends and family dont get me at times. While I have great support systems their advice isnt resonating with what Ithink I need...does this makes sense?  Thanks for your time. 

girliefighter's picture
girliefighter
Posts: 194
Joined: Mar 2013

Jessica,

Welcome...you are in the right place and what you say does make sense. People that have not actually went through what we all have went through have no idea what we are truly feeling and thinking. I too gained some great sprituality and a sense of knowing that my journey has changed my course and put me on a different path. Congrats on the clean PET!! Surviving cancer is a full time job within itself, but gaining knowledge and faith along the way makes it that much better.

xxxooo

Carie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1008
Joined: May 2012

Several of you have heard me mention an older friend (he was 72) who has been fighting prostate cancer for 13 years for whom I have been (with a few others) providing transportation and some amature care.  This seems like as good a place as any to mention that he died this afternoon in Hospice.  I do not see the need to start a whole new thread, since most of what I write about him has been at the Prostate site. 

Gary was a trooper !  Thirteen years in the battle ! (Have we been in Afghanastan that long ?)  

He had mostly good years. He has been in late stage 4 for about the last two years, but only the last six months or so were what I would describe as "horrible."  He went thorugh a list of new, pallative drugs.  There is a lot of new stuff in the fight against Prostate, so anyone newly-diagnosed has much cause for hope .  He is a poster child for why a cancer patient can look with promise to the future.  I would take thirteen years verses zero years any day !

Bless his soul.  St Paul wrote:  "I make up in my own body what is lacking in the sufferings of Christ."   May Gary look down upon us all with love.

max

Shoopy
Posts: 210
Joined: Jul 2013

Max,

I am very sorry that Gary passed.  Gary, you, and the rest of his support network will be in my prayers.

Karl

MChantal's picture
MChantal
Posts: 94
Joined: Apr 2013

Hello everyone,

I feel as though I have been extremely M.I.A as well. Jeez! Haha.

I will post a little update and would love to hear how everyone else is doing.

We are currently in Denver, CO Blood Cancer Institute. As we speak or rather, type, Kyle's stem cells are being collected! Woo-hoo!

(Apheresis machine aka Big Bertha!)

(Early morning has us being silly!)

I last mentioned in a post that Kyle has no evidence of cancer within his body! Which is the best possible thing we could wish and want for the SCT. Smile

He gets admitted next Monday (Sept 30th, 2013) for his 6 days of high dose chemo (BEAM). His transplant day and new birthday is October 7th (one day after my birthday) how awesome is that! So we get to celebrate our birthday's together!

 

Hope everyone is doing beyond amazing. I want nothing but the best for you ALL!

Love,

Michelle

 

Shoopy
Posts: 210
Joined: Jul 2013

Kyle and Michelle,

Great news!  Keep going and plugging away.  I'm about a month behind you as they plan to collect my stem cells around the 22nd of Oct.  First week of November is when I go in for the high dose chemo!

Keeping you in my prayers!

Karl

MChantal's picture
MChantal
Posts: 94
Joined: Apr 2013

Hello Karl,

You are just around the corner as well. It will be here before you know it and then, it will be even faster until it's all done. Please keep in touch with us and ask any questions you may have, as we will try our best to answer them. You are more than welcomed to post it here, message here or email Kyle/myself directly.

Where are you having your SCT done at?

You as well, are in our prayers!

Michelle

Shoopy
Posts: 210
Joined: Jul 2013

I'm having it done at Roswell Park Cancer Institute...or Area 51 (as someone here referred to it).  Luckily its only 20 minutes from my house.

MChantal's picture
MChantal
Posts: 94
Joined: Apr 2013

That is so nice that you are only 20 mins away. Unfortunately, Kyle is 5 hours away. It's okay tho, I am not going to complain because it is only a 50 min flight. So I have been flying back and forth every weekend. Not too shabby! Laughing

Shoopy
Posts: 210
Joined: Jul 2013

It's a small price to pay for spending the rest of your lives together, right?

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