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It's back, so I am too

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

You know how you should take your own advice?  Well guess who didn't? That's right - ME! (Yes, I use a lot of sarcasm - anger cloaked in humor).

Original diagnosis in 2009, watch & wait until 2010.  I started Rituxin only treatments, once a week for 4 weeks every 6 months for 2 years.  I was clean! 

Fast forward Feb 2016, I started experiencing pain in my hip where I had a spot of NHL previously, RAN my butt to Onc.  Didn't see doc, saw P.A. - muscle spasms. Really? just muscle spasms? I've never experienced them before so I thought OK good news! Right? 

One month later, muscle relaxers aren't working back I go to see the P.A. again (mistake #1).  She orders an X-Ray.  An X-Ray??  What is an X-Ray going to show I thought to myself (mistake #2), well they are the doctor they must know what they are looking for - Right? (mistake #3)

X-Ray showed nothing.  So on I go, limping, cringing, popping Advil and Aleve thinking it must be Sciatica (mistake #4), the pain is radiating down my leg to my knee.  Nov 2016 I go for my check-up with Onc, blood work is clean (and always was even after inititial diagnosis). She dosn't like that I have been having pain for 10 months (ya think?!) sends me for a CT scan - gee, something shows up in CT scan.

MRI and PET Scan confirm, 13mm tumor in hip. Will be going for biopsy in the next week. Well - Merry Christmas to me!

Lesson:  QUESTION QUESTION QUESTION!!  YES TAKE YOUR OWN ADVICE.  I didn't question it out loud.  That little voice in my head tried to tell me, but I had the Ostrich Syndrome (head in the sand).  I was "clean" - what a false sense of security.  I had history - it should never have gone this far, but I didn't push it (PUSH IT!!) because I thought they knew what they were doing.  (Total faith in the Onc, will never be seen by the P.A. again). I did the ole "self-diagnosis" - Sciatica - of course, that's what it has to be there was nothing on the X-Ray. 

At this point - it is, what it is. Pretty sure I won't get off so easily with just Rituxin this time.  Chemo here I come!

(I love this website, I so needed to vent and not worry my family.) Thanks for listening!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

Sorry about the need to revisit the Board catwink . I too was first diagnosed in 2009, but did not join here until a few years later.

What strain was your initial lymphoma ? Lymphoma usually returns as the same strain, but not always: it can reoccur as virtually any one of the roughly 50 forms of the disease.  Only a biopsy cam determine this. If you have only one 13mm node visible on PET, then if there is any good news in this, it is that the disease of very incipient -- not yet spread about. It might even be treatable with radiation, perhaps with some adjuvant chemo, but that would be determined by strain. Few people are ever diagnosed with only one node involved. Of course it is not confirmed as lymphoma yet; a PET cannot do that.

Please let us know what you learn from the pending tests. I know the timing is not the best a few weeks before Christmas.   Pulling for you,

max

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi Max,

I was initially diagnosed with Follicular, stage 4, grade 1.  The biopsy is scheduled for tomorrow so answers are coming. Sometimes the waiting is the hardest part! 

Thanks for your support!

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

Hi catwink22,

Thank you for your warning!

Yes, we have to go on questioning if we experience something strange. It might be the disease returning.

Good luck now with your treatment!

Sten

 

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Thanks Sten!

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

Catwink22, sorry to hear your cancer is back. Especially finding out so close to Christmas. Being clear for like 4 years I think I would be like you. Have a problem and told it is not related to the cancer. Go on your merry way.  As you said "Lesson learned".  Now move forward and fight the monster. 

Two years ago my Dr found a lump in my abdomen. About a week later I heard the word "cancer" for the first time. I decided to not tell my family until all the test were back and I had more details. That happened the day after Christmas. 

It stinks anytime a person finds out they have cancer. Finding out around the holidays always seems to make it worse. All you can do is celebrate the holiday and focus on being with family and friends. The gear up to battle cancer again.  

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi lindary,

Yes, you are right.  It's hard around the holidays, but actually for me it's a welcome diversion.  What better way to take your mind off things than shopping?! The harder part for me is my niece who I am very close to is getting married in the summer and I feel this will take away some of her joy on her big day.  But I know you can't pick when you're going to be sick (imagine if we could? - how convenient lol).

Just wish I knew NOW what monster I am fighting.

Thanks for your support!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

cat,

I had guessed Follicular, a very indolent (lazy) type.  Several regulars here at the Board have been on maintenance for Follicular for years.  Hopefully it has not morphed into something meaner.  Please share results when they come in, for as I noted, a lot of folks have done "the Follicular thing."

max

Parrishhome's picture
Parrishhome
Posts: 4
Joined: Oct 2015

I am so sorry to hear it's back.  I have Folliculsr stage 3.  8 rounds of R-CHOP and 2 years of Rituxin.  Just finished!  Diagnosed in 2014 with 9 areas and after all this treatmnt, I still have 2 areas in abdomen area (but they are smaller).  My Onc has said to flush port every 6 weeks, every 12 weeks bloodwork, and every 3 months a CAT scan.  I'm worried that I'm not having any treatment knowing it still is in my abdomen!  Any suggestions?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

Parishhome, 

Your experience is not uncommon here, actually fairly typical.  Your oncologist was describing what is called 'Active Surveillance,' or the older term 'Watchful Waiting.'  It is not really 'doing nothing,' but is better regarded as a sort of strategic timing. Two terms that have a lot of overlap and which are usually clinically related are AS and maintenance.  Often maintenance requires 'taking a break' for effectiveness.  When you received the two years of Rituxan, you were in maintenance, although the doctor may not have used the term with you. Your R-CHOP was your first-line therapy, when you entered partial remission (PR), which was followed with the maintenance protocol.  If a more aggressive treatment were required later, that is termed second-line or salvage treatment, which usually consists of a new chemo group or stem cell transplantation (SCT).   I have no medical training or credentials, and am basing this on the facts you presented in your post.

Linda shared her story regarding it above, and I hope others will also.  I have not ever been under A.S. or maintenance myself, but it was the first recommendation I received when I learned I had prostate cancer a few years ago. But in prostate cancer maintenance consists of hormonal therapy, not chemo.  A.S. is not unsafe or a situation I which your doctor is ignoring you, but the feeling of 'shouldn't we be doing something' is very common and understandable. Lots of regulars here have done well, symptom free, for years or decades on maintenance therapy.  What usually happens is as long as your modes do not grow, you will continue to be monitored.

PROBABLY (I have no way of knowing this) if the nodes do not expand for a year or so, the CTs will be given less frequently, maybe only once a year.  Follicular is highly indolent, or slow-moving, so it does not have to be looked at constantly.  I myself had the most indolent form of Hodgkin's, but it is very rare. Follicular is very common, about 30% of all new NHL cases, and doctor are very familiar with it and what is available to keep it in check.

For prostate cancer, I know a lot of men who have prospered and done well on hormonal therapy maintenance for a decade or longer before other tools were required. HT is used against breast and prostate cancers, but not lymphoma -- I am just illustrating that maintenance has a lot of success in fighting cancers generally.

I wrote this here because is is relevant to Catwink's initial post, but you may want to begin your own thread...They are free !

max 

Parrishhome's picture
Parrishhome
Posts: 4
Joined: Oct 2015

Thank you, Max.  I appreciate any info I can receive.  What do you mean "start my own thread?"  I wish all of you good luck and good health.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3499
Joined: May 2012

Parrish,

A "thread" is a discussion topic.  You can create your own topic that will remain focused on you and your issues. When you are logging in, after you select "LYMPHOMA," at the top of the topics, there will be an option to "Create New Forum Topic."  Of course topics and discussions reasonably overlap and wander a bit, but this is the best way to keep replies to you organized for your reference.

max

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