ROLL CALL 2016 - UPDATED June 27, 2016 (CLOSED)

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CivilMatt
CivilMatt Member Posts: 4,723 Member
edited September 2016 in Head and Neck Cancer #1

 ROLL CALL 2016

Updated June 27, 2016

All H&N members are welcome!

 

Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Forum inspired him to start and run this thread (2008 thru 2014).  Thank You.

First off, please feel free to Enroll (name, town, state, dx) or Check-In whenever you see the ROLL CALL thread.  I will update periodically throughout the year.  Also, if you see edits which deserve attention please let me know and if I missed you, I am sorry. 

With the third update of ROLL CALL 2016 we have had (as of June 27, 2016) 195 members who enrolled since 2008.  There has been 47 members either checking in or enrolled, so far. Which leaves a number of MIA’s I am still hoping will check in.  Come on gang! Pop-ins are cherished.  Let’s try to hit 100 or more!  H&N members are the greatest!

As always the ROLL CALL thread is completely voluntary and just for the enjoyment and information it provides.  Leave your mark, share your stories, you matter.

 

H&N MEMBERS

 

 Adventurebob, Marin County, California, joined forum June 2010, enrolled August 21, 2010. DX’d NPC, stage IV with mets to lots of bone. in May 2010. Checked in January 20, 2011. MIA in 2012, checked back in March 2013. Lots of chemo/radiation in 2010, more in August 2011 for bone mets in right hip, more chemo/radiation Sep 2012-Jan2013. Married in bottom of Grand Canyon October 9, 2012 and now doing well.

 

AJW1966, outside Annapolis, Maryland, joined forum November 2012, enrolled March 7, 2013, DX’d August 12, 2012 w/SCC left side HNC. Treatment completed November 30 and still have difficulties with after effects, but slowly improving.

 

Akotke, Alabama, joined forum March 2011, enrolled August 12, 2011. DX’d Stage IV, right tonsil in November 2010. Was MIA until checked back in February 12, 2013. Still NED, working full time and attending school for Nuclear Medicine. Still w/constant pain from radical neck dissection, dry mouth and some trouble swallowing.

 

AndrewP16nose (Andrew) New Zealand.   Enrolled July 19, 2015, Diagnosed Sept 2014. Invasive SCC nasal septum extending into maxilla. Incomplete excision Oct 2014. Radio and chemo for 35 days. PET scan April 2015- NED. Facial reconstruction surgery with fibula free flap June 2015. Recovering prior to tidy up surgeries.

 

Arndog64, state unk, joined forum March 2011, enrolled husband in April 18, 2011. DX’d left tongue base tumor w/lymph node invasion on January 28, 2011. After MIA, reported back on February 5, 2013. Husband doing well but still has throat pain and teeth starting to deteriorate.

 

 Avisemi (Majose)  caregiver.  Washington, DC. Enrolled July 15, 2015.  My husband Dmitri was diagnosed with nasopharyngeal squamous cell carcinoma stage 3 or 4 depending on doc on Sept 2014.  Finished treatment in Feb this year. First post treatment scans were NED. Next ones are next month.  Pone of the favorite tips I learned here: "if Jeff can do it, Dmitri can do it"

 

Backachedp, Minnesota, joined forum October 2009, enrolled July 24-2010. Husband Bob DX’d unk on September 29, 2009. NED May 23, 2010. MIA in 2012 and checked back in March 13, 2013. Was doing OK but with swallowing problems. Having lung issues due to aspiration.. Dr recommending feeding tube.

Chked back June 22, 2013. Surgery on May 20 and swallowing/coughing gotten worse. Also have back problems. God bless and saying a prayer for him.

 

Barbaraek (Barbara, caregiver to husband Boris, age 55). Joined Sep 4, 2015.   Diagnosed 5/26/15, NPC stage IVa T4N1M0, 35 radiation tx with 2 concurrent Cisplatin, currently attempting adjuvant chemo Cisplatin + 5FU. Finished treatment September 2015 - was only able to tolerate one round of adjuvant chemotherapy. Great news was NED on October 2015 PET scan. Will now receive regular scans.

 

BartT, Staten Island, NY, joined 03-2013, enrolled 12-31-2013, DX’d 03-2012 w/tongue cancer. Hemiglossectomy, radiation & chemo. All clear at time of enrollment and back to 100% on activities and life style, but with minor but annoying side effects.

 

Bebo12249  Enrolled Oct 29, 2015 SCC HPV+ of the tonsil with positive lymph nodes July 2015. Tonsillectomy followed by seven weeks rads and Cisplatin. Completed treatment on 10-22-15. Thanks to everyone for their comments, support and knowledge.

 

Billie67, Torrance, California, joined forum July 2012, enrolled October 24, 2012. DX’d stage IV laryngeal SCC with few lymph nodes. PET/CT NED on September 28, 2012. Checked in January 3, 2013. Updated 01-01-2013

 

Bjohn, Chicago, Illinois, joined forum October 2011, enrolled January 22, 2013. Husband DX’d w/olfactory neuroblastoma in May 2011. Recurrence in neck in May 2012. Good response and feeling well at time of enrollment. Updated 01/22/2013

 

Boardwalkgirl, Indiana, joined forum June 2012, enrolled February 10, 2013, DX’d April 26, 2012 with SCC in lymph node on side of neck. Treatment completed and clear PET scan on October 27, 2012, Still struggling with lack of saliva and taste buds.

 

Bunnymom, Chicago, IL  checking in May 22, 20114 Tongue cancer. Starting chemo & rads June 8th. 12 week treatment plan. Thanks to everyone for their support!

 

CajunEagle, (Larry), Louisiana, 2009, joined forum October 2009, enrolled February 3, 2010, DX’d Stage 4, left tonsilar cancer in 2009. Enrolled on February 3, 2010. Reported back in March 7, 2013 and still doing well. Checked in January 6, 2013.  Checking in Jan 14, 2014 and doing quite well. Thanks to all.  Checking in Aug 17, 2015  After 6 years post treatment………I’m still around.  Thank you. Checking in Jan 2, 2016,  Coming up on my 7th year since dx and treatment for stage 4 Left Tonsillar cancer.  Doing well in that regard.  Underwent 3 full-blown surgeries for intermediate Melanoma on my right ear (between lobe and sideburn) in February, 2015.  After reconstruction of ear area, all is well except for numbness in that ear area.  Currently undergoing 30 dives of Hyperbaric Oxygen treatment for removal of a molar on my left lower side.  20 prior to extraction, and 10 after.  Extraction was 8 days ago with absolutely no pain, and I have only 3 dives remaining.  All this due to radiation from 7 years ago.  Each session of HBO has a duration of two hours per day.  Takes one heck of a commitment.

 

Cardoza33 (Tony) California.  Enrolled June 26, 2016.  Age 45.  Diagnosed Nov. 23, 2015 w/ SCC Tonsil stage 4. 2 cisplatin and 6 weeks of rads.  Finished treatment Feb. 3, 16.  May I had first NED scan. Feeling good.  Eating is a chore, ringing in my ears and some nerve issues, but otherwise feeling good and happy.

 

Carolinagal4, Apex, North Carolina.  Enrolled July 26, 2015  diagnosed stage 4 SCC of the tongue (side of tongue) with lymph node involvement in April 2015. Finishing up 35 radiation treatments with concurrent chemo (Cisplatin) now--one more week to go!  The cancer has shrunk considerably so far and I am hopeful that it will continue to shrink (if so, I may avoid surgery).  This site has so much great info and people on it--I feel lucky to have found it!  thanks so much to everyone who takes the time to reply--You make a difference!  Checking in Jan 18, 2016, Unfortunately, PET scan revealed that my cancer was the aggressive type that had grown back.  I had sub-total glossectomy and selective neck dissection in November 2015. Currently dealing with dry mouth, sore throat--hopefully these will be temporary. Since I lost my entire oral tongue (the part that moves) and was only left with the base of tongue, I have very limited mobility with the flap that replaced my tongue (from my arm).  Some days, I can speak well enough to be understood although it always sounds like I have a mouth full of something, other days my voice is so hoarse that I can barely make a sound--this seems to be related to the dry mouth and sore throat issues.  I have not been able to resume eating and survive on a peg tube.  I am also having difficulty drinking, although this seems to be improving and I am in swallow therapy. I do have lymphedema in neck and massage is helping.

 

catfish_58, Waco, TX, joined forum February 2013, enrolled July 30, 2013. DX’d SCC left tonsil, HPV+ Stage III.  33rads and 7 weekly chemo's of Cisplatin,Started treatment in 2-25-2013. Treatment completed April 20, 2013 and scheduled for PET on July 31st.  Am 9 months post now, Saliva very little ,taste almost back to normal.  Check in Jan 13, 2014.  Checking in May 20, 2016.   just checking in and doing pretty good, Thanks to all members of CSN for the words of encouragement and all info.

 

Catluver96 (Viki) Jan 15, 2014, Diagnosed July 2012. Tongue cancer stage 3. Radical neck dissection. 1/3 of tongue removed. Skin graft from thigh for side of tongue. Chemo (Cisplatin) and 33 rads started October 1, 2012 finished November 15, 2012.  Doing well. Eating good, have most of taste back. Read forum often. Best wishes to all.

 

CathyHorner, Johnson City, TN, joined 11-2013, enrolled 12-29-2013. DX’d Stage III, Laryngeal cancer in June 2013. Clear pet scan in 11-2013. Need trache for breathing and difficulty speaking.

 

CherieLW, Lancaster, Ohio, joined forum May 2010, enrolled dad (Steve) on June 4, 2013. DX’d cancer of sinus w/one affected lymph node. Undergoing treatment at time of enrollment.

 

Christmas, California, joined forum May 2005, enrolled July 8, 2008. DX’d NPC Nasopharyngeal in 2004. had been absent but back in. Last check in July 14, 2013 and life has beeen good. Dealing w/problems and completed 10 years from DX.  Checking in May 21, 2014 Sorry I missed the roll call.  I have been very busy with work.  Lots of demands and deadlines requiring 12 hour days.  Can't complain except that I don't have much time for anything else.  Good news to share - I have a new grandson who is now four month old.  Unfortunately, he lives a six hour drive away.  It's been nearly eleven years since my diagnosis.  I feel very fortunate.  Very minor complaint - dry mouth an issue because people have difficulty understanding my speech.  Still no other meds aside from a low dosage of synthroid.  Lots of infections - eye, bladder.  Lots of dental problems.  Other than that life is GOOD!  Just getting older.

 

Chucka21, Vine Grive, Kentucky, joined forum April 2013, enrolled May 21, 2013. DX’d February 21, 2013 w/SCC unknown primary. Modified neck dissection March 5, 2013. Tonsillectomy April 14, 2013. Undergoing radiation at time of enrollment.

 

cid817,  Fredericksburg, Virginia Enrolled July 24, 2015 Husband was diagnosed August 2013 – SCC of epiglottis with 2 lymph nodes, Stage 4b - HPV negative.  Completed treatment end of November 2013 – 35 rads, weekly cisplatin (6 total), no surgery.  Did our research and 3 consults before treatment.  Walter Reed suggested surgery to remove epiglottis along with the tumor and put in a temporary trach tube, then chemo and rads.  Was told that the rads would destroy epiglottis and that is why they would remove it.  Local ENT suggested chemo and rads, no surgery.  Local radiologist was furious that we were told rads would destroy epiglottis; said they were trying to save it, not destroy it.  Went with local ENT, radiologist and oncologist.  Were shocked with the differing opinions of treatment!  Here we are, almost 2 years later, NED.  Second PET scan will be in November.  Issues with dry mouth and taste, some swallowing/slight choking issues, occasional flair ups of the radiation site.  Every day is a gift.

 

CivilMatt (Matt) Albany, Oregon, enrolled October 22, 2012. DX December 23, 2011 w/Stage Iva, SCC, BOT, HPV+ & l lymph node on left side of neck (surgery, radiation & Erbitux).  660 days post, lost 43 lbs, gained 20 lbs, saliva, dry mouth and taste challenged.  I am on the standard H&N plan seeking maximum recovery.   I see life differently now, wonder and tragedy are but a heartbeat away.  My H&N friends help keep me grounded.  You are all special in your own way.  Time is precious.  Checked in January 19, 2013. Check in January 12, 2014,  Check in July 13, 2015.  Checking in Jan 1. 2016  All is nice in my new-normal world, eating is a cautious and very enjoyable.   Trying very hard to maintain a strong immune system.  Lots to do

 

CLRRN (Mike) partner Chris, Maryland, joined forum June 2010, enrolled July 13, 2010. Reporting for partner Mike. DX’d SCC left tonsillar basloid. Checked in August 7, 2011. MIA and checked back in June 3, 2013. Reported good news…some ailments but NED.  Checking in Jan 8, 2016, I joined when my partner Mike was dx w/Stage 4 SCC tonsil in 2010. He remaind NED and doing great. He had all his teeth extracted (what he had left) in 2014 and got full dentures. Aside from his hoarseness and has no complaints.  Forever grateful to everyone for the support to me and all the helpful hints/suggestions to allow me to be a better caretaker.

 

Connieprice1 (Connie & Homer) Enrolled Nov 8, 2015 Connie Price Stage IV BOT with 2 lymph nodes involved HPV+  Completed Chemo & 35 Radiation treatment 4/2011. So far so good! Please add Connie to survivor list. I was sorry to read that some of my good friends had not survived. Some I communicated with directly and some I always read their posts. To: Barefoot Bob, Delnative (Jim), Jim and I (survived by Debbie), luv4lacrosse (Mike), To be Golden, Wolfen (Ron) and Charlie Trinks (survived by Jan) May you All Rest in Peace and that Heaven is Everything we dream it to be. To Everyone that has lost a loved one here, I pray for the caretakers and families.

 

Corleone, Mississauga, Ontario, Canada, joine forum July 2012, enrolled February 1, 2013. DX’d NPC Stage III on June 14, 2012. Treatment completed December 1, 2012. Check-in July 10, 2015 Toronto, ON, Canada joined forum 21-July-2012.  Diagnosed with Nasopharyngeal carcinoma, stage III, on 14-Jun-2012 ,Last checkup May 2015, complete remission.   Corleone: I made Cancer an offer it can’t refuse

 

Crazymom (Ann)  Checking in Sep 8, 2015 I had left tonsil and two left lymph notes.  I have been cancer free for 3.5 years.  I am doing well and enjoying life.

 

Cureitall66 (Cris & Kreg), Michigan, joined 12-2012 enrolled loved one on October 23, 2012. DX’d on August 21, 2012 w/Stage IV, SCC, BOT, HPV=, 1 lymph node n left side of nect.   Still undergoing treatment at time of enrollment.   Tx ended Nov 2012 No surgery, Chemo (Carboplatin & Paclitaxel) once wk for 7 wks, Radiation 5 days wk for 7 wks Reported back 12-30-2013 that NED after treatment. Doing well w/minor issues.  Checking in July 20,2015  Latest check up 07/16/2015 – NED.  Back to Golfing and riding his Harley! Enjoying Life! 

 

Cwcad, joined forum November 2009, enrolled January 31, 2010, state unknown, checked in 01-31-2010, DX’d Stage IV BOT in February 2007. MIA list and checked back in on February 10, 2013. Neck spasms irritating, but not bothersome. Had heart bypass surgery. Doing well.

 

6Cyn  (Caregiver for Husband) Enrolled Aug 7, 2015 He was diagnosed in August 2013 with stage IV Head and Neck cancer, left tonsil and three lymph nodes on same side. 35 rad treatments and 3 cisplatins did the trick. This site is a wonderful support and full of information. Thanks to all  His words, "Hold on tight and do the fight!"

 

DarcyS Michigan, enrolled January 29, 2016.  joined 2015. Diagnosed in June 2012 with Piriform sinus cancer with 2 lymphnodes, stage iv.  6 weeks chemotherapy with taxol, cisplatin and cetexamaub.  Clinical study with everolimous.  50 radiation treatments with imrt, inpatient with concurrent chemo, 5fu, taxol and hydrea.  3+ year NED.  

 

D Lewis (Deb), Sierra foothills, California, joined forum January 2010, enrolled February 5, 2010. DX SCC base on tongue, January, 2010, checked in July 23, 2010. . PET-CT NED in October 2011. No snot, no spit, no tears, but otherwise living life to the fullest and having a great time. Updated 02-01-2013.  Check in Jan  17, 2014   Still hanging in there.  It will be four years from end of treatment in

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Comments

  • osmotar
    osmotar Member Posts: 1,006
    edited July 2016 #2
    Options
    Update

    osmotar ( Linda) Buckeye , AZ 

    I'm at 182 days until I am out of treatment 5 yrs ,my onco when I saw her in April 2016 finally used the words cancer free ,  my health is still good, working full time  , " living the dream" as someone recently said . My next onco & ENT appointments are in Oct , hoping they both say seeeee yaaaaa in a year . 

     

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    update

    Linda,

    Thanks for checking in.  2016 has started out slow, there are a lot of MIA’s.

    Glad to hear you are coming up on 5 years,  I am right behind you.  It is hard to believe what H&N has done to each of us.

    Peace,

    Matt

  • CajunEagle
    CajunEagle Member Posts: 408
    Options
    Checking in.......7-11-2016

    After all the other stuff I've been through up to this point, on May,12th 2016, I was informed that I had a re-occurance of Melanoma in my right ear area.  Long story--short, I lost my entire right ear and ear canal.  I now have a flap over that area that was taken from my right thigh.  Surgery was 14 hours long with a team of 3 of the best on this earth.  Eight days in ICU.  SOBs tried to say I was aspirating and placed a feeding tube through my nasal passages to my stomach.  Wanted me to intake Jevity....which I did for 3 days at home.  They wouldn't release me till I agreed.  Surgeon from 09' stepped in and removed it and gave em hell.  New side effects...1)  Droopy right eye ( to be fixed Aug.12th).  2) Nerve damage to right side of mouth.  It "may" return to normal over time.  3) Very sore right lower jaw and burning around throat and former right ear area.  4)  And back to slow eating issues.  Only been a month and a half, but I'm ready to get this over.  Larry  

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options
    Alive and Kicking~

    Doing well.., recovered from the Whipple from Hell, LOL.., that in 2014.. All well clean and clear from STGIII Tonsils in January 2009.. It's been a long road with a few bumps, but it was a good reminder to get my priorities straight.


  • Barbaraek
    Barbaraek Member Posts: 626
    edited July 2016 #6
    Options
    Update 7-12-16

    scans today are NED! Monitoring will now be every 6 months. Dry mouth is still a big challenge, but eating is getting better, and energy is returning. Chemo port, PEG, and all pain meds are gone...and hair is back!

    Barbara - caregiver to husband Boris, diagnosed with stage 4 nasopharyngeal tumor 5/15.

  • CajunEagle
    CajunEagle Member Posts: 408
    Options
    Skiffin16 said:

    Alive and Kicking~

    Doing well.., recovered from the Whipple from Hell, LOL.., that in 2014.. All well clean and clear from STGIII Tonsils in January 2009.. It's been a long road with a few bumps, but it was a good reminder to get my priorities straight.


    Hey man.....

    While being bed ridden in ICU for the 3rd day.......throat sore as hell from having tube down my throat during surgery......I kept thinking, "What can I swallow that will give me some calories and keep these medicos off my ****."   Then I remembered.....CANNED PEACHES IN THAT SWEET LIQUID SYRUP.  Oh my goodness.  You saved me a whole lot of pain and bull jive.  Thank you so much, John.

    Larry

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options

    Hey man.....

    While being bed ridden in ICU for the 3rd day.......throat sore as hell from having tube down my throat during surgery......I kept thinking, "What can I swallow that will give me some calories and keep these medicos off my ****."   Then I remembered.....CANNED PEACHES IN THAT SWEET LIQUID SYRUP.  Oh my goodness.  You saved me a whole lot of pain and bull jive.  Thank you so much, John.

    Larry

    LOL...

    Awesome.., it sure did the trick for me.., "That yella whiskey runnin' down my throat like honey dew vine water"., umm as Jimmy Buffet would say..

    Glad you remembered, and even better that it gave you relief..

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    Skiffin16 said:

    Alive and Kicking~

    Doing well.., recovered from the Whipple from Hell, LOL.., that in 2014.. All well clean and clear from STGIII Tonsils in January 2009.. It's been a long road with a few bumps, but it was a good reminder to get my priorities straight.


    checking in

    Larry & John,

    Great to hear from both of you, a little scary, but nice.

    Matt

  • The arn man
    The arn man Member Posts: 9
    Options
    Cancer sucks

    I'm almost 4 years post treatment. I'm cancer free but all the radiation and chemo took its toll. I'm feeling old before my time but I'm still hoping I'll get stronger.

    Thats winning right? I still have hope.

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    Barbaraek said:

    Update 7-12-16

    scans today are NED! Monitoring will now be every 6 months. Dry mouth is still a big challenge, but eating is getting better, and energy is returning. Chemo port, PEG, and all pain meds are gone...and hair is back!

    Barbara - caregiver to husband Boris, diagnosed with stage 4 nasopharyngeal tumor 5/15.

    checking-in

    thanks for checking in and  NED to boot

  • Dazey
    Dazey Member Posts: 91
    Options
    July 2016 check in

    It has been seven years since diagnosis.   Wow, what a journey!   I am doing very well with no recurrences.   I do have annoying post treatment issues that are a constant reminder of this journey.   I completed my treatment the end of October 2009.   I am very grateful for all I have and can live with the post treatment issues.   I have major dental issues since tx.   - Full upper and we are working on the best pathway for lowers this month.   I occasionally have difficulty chewing and swallowing - absolutely nothing spicy!    Food is definitely not a highlight which is okay since I can no longer smell or taste.   The only thing I can actually smell is Pine Sol........my house is really clean!

    After testing, the neurologist was unable to find out a reason for these losses and told me I just have bad luck.   I prefer to think I have great luck and am very happy to have survived the dx and tx.  

    Good wishes for all who are starting this path and those that are looking back on the journey.

    Dazey

     

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options
    CivilMatt said:

    checking in

    Larry & John,

    Great to hear from both of you, a little scary, but nice.

    Matt

    Bawahahaaaa...

    I'ma lurkin you Matt..

  • wild willy
    wild willy Member Posts: 63 Member
    Options
    checking in

    still kicking and dealing with what we were delt.  Bill

  • Bart T
    Bart T Member Posts: 62 Member
    Options
    PRESENT

    I recently posted about 4 years since my last treatment, so now is as good a time as any to check in. The short story, 4 years out, no cancer, doing everything just like before cancer, but do have a batch of annoying side effects, mostly from the radiation. I complain a bit now and again, but very happy to be here. 

  • bebo12249
    bebo12249 Member Posts: 181 Member
    Options
    Had a 10 month post treatment

    Had a 10 month post treatment scan today - NED!!

  • Hondo
    Hondo Member Posts: 6,636 Member
    Options
    Forget me Not

     

    Still here and still alive, came down with some Pneumonia again but that is due to not being able to swallow. Feeling like crap but that is all part of live.

     

    Tim Hondo

     

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options

    Cancer sucks

    I'm almost 4 years post treatment. I'm cancer free but all the radiation and chemo took its toll. I'm feeling old before my time but I'm still hoping I'll get stronger.

    Thats winning right? I still have hope.

    welcome to RollCall

    The arn man

     

    Great to count you as registered for RollCall.  Wish I knew where you call home?

  • Raddude
    Raddude Member Posts: 84
    Options
    Checking In

    Diagnosed with Stage iV scc in October 2015. 7 rounds of erbitux and 35 rounds of radiation. Finished treatment 3/7/16. first PET was negative and now on a new normal life.

  • jeffw69
    jeffw69 Member Posts: 10
    edited August 2016 #20
    Options
    Checking In

    Diagnosed march 15 with BOT stage iv,went through 39 rads and 6 chemo,i finished my treatments june 19 of 2015,got my NED sep of 15.enjoying every day

  • robswife87
    robswife87 Member Posts: 209
    Options
    Checking in

    Rob is 3 years 3 months out and still NED. Suffers from myoclonus but Keppra keeps it under control. Had some muscle spasms for a couple months but seem to be gone.