We are 144,813 members in 73 forums discussing 114,653 topics.

Help with Abbreviations

All TopicsForum: Radiation Therapy - Before, During and After → Topic: Sjogrens Syndrome/Radiation

Topic: Sjogrens Syndrome/Radiation

Forum: Radiation Therapy - Before, During and After — What to expect from treatment and ways to cope with side effects.

Posted on: May 2, 2010 03:41AM

2ladybugs wrote:

Hello,

I just had surgery for ductal carcinoma in situ.  I am very fortunate because it was caught early, and surgery went well.  Soon I will be going to radiation treatments.  I am concerned because I have Sjogrens Syndrome which is an auto-immune disorder.  I have read these treatments damage the salivary glands in your throat/mouth, and cause dry skin.  My glands and skin are already having problems due to my disease.  Anyone have any insights or experiences?  Your thoughts and comments would be very much appreciated. I am a little nervous and I don't know where to turn for answers.

Thanks so much!

2ladybugs

Log in to post a reply

Posts 1 - 16 (16 total)

Log in to post a reply

May 2, 2010 05:04AM, edited May 2, 2010 05:05AM by LisaSDCA

Hi 2ladybugs, and welcome to the boards!

The field of exposure should be well below your major (and minor) salivary glands, even if they do the axilla (armpit). Dry skin is another problem altogether. We Sjogies need extra moisture, both inside and out, so stay hydrated. Dryness, itching, peeling, or even burning is very individual and prevention is the wisest route. Do you have a routine for when you get out of the tub or shower - slather it on thick. If you need some suggestions in addition to what you now use, do a search (hint: limit it to this forum) on itchy, burn or similar. Do your routine at least a couple of times a day, and if it's convenient, you might want to wear no bra, loose-fitting cotton or linen tops, or go nekkid. :)

Good luck!

Lisa  (Reg. dental hygienist for 20+yrs so I know spit!)

Stage IV mets to brain 11/2008 BRCA-1 positive

Dx 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2-
Log in to post a reply

May 5, 2010 01:56AM cocojo wrote:

Hi 2ladybugs!

I also have Sjogrens Syndrome. My case was quite mild with really only dry eyes and slightly dry mouth as symptoms...however, I was diagnosed with breast cancer and because of lymph node involvement (4/12), after surgery I needed chemo prior to the radiation. In my case the chemo agravated my symptoms of sjogrens. My eyes are much worse now, I use eyedrops nearly on the hour and my mouth became so dry it was intolerable! I think my salivary glands nearly shut down completely. My rheumatologist started me on "Salagen" 3 times a day and then 4 times a day after a month till it finally kicked in. Now, it is not ideal but much better. So I must stay on Salagen for the rest of my life I guess! To make a long story short, the radiation didn't worsen my condition, it was the chemo. You should be fine! I had some burns on my skin due to the rads, but not worse than anyone else I was told. Now I am 2 months post treatment (25 rads) and my skin is all healed. Just has a brownish taint to it. Good luck...let us know how it goes and it would be nice to keep in touch...not many of us "sjogrens" around!

 Jo  :)

Dx 6/2009, IDC, 1cm, Stage IIIa, Grade 2, 4/12 nodes, ER+/PR+, HER2-Surgery 06/29/2009 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)Chemotherapy 08/03/2009 fluorouracil, TaxotereHormonal Therapy 12/26/2009 TamoxifenRadiation Therapy 01/15/2010 External
Log in to post a reply

Feb 27, 2012 11:29PM mkmware wrote:

Anyone like me have Sjogrens Disease and DCIS Breast cancer that had lumpectomy, completed radiation therapy and on SERMs (Selective Estrogen Receptor Modulators) Tamoxifen: Please share your experiences-symptom flares? How have others coped and what did you do?

Be faithful in small things because it is in them that your strength lies.

Dx 9/16/2011, DCIS, 3cm, Stage I, Grade 1, 0/0 nodes, ER+/PR+, HER2-
Log in to post a reply

Feb 28, 2012 02:38AM, edited Feb 28, 2012 02:40AM by Corrie

Hi,

I too have Sjogrens Syndrome.  I had a double mastectomy, chemo and radiation.  None of this really aggrevated my Sjogrens, except for the dry skin in the radiated area.  I used a ton of aquafor.  Every night before bed I would just cover my chest and put on an old shirt.  It was messy but I think it helped.  I finished rads last may and my skin is pretty much back to normal, it just looks a little darker.  Good luck to you!

I forgot to mention I'm on tamoxifen now too.  The side effects suck but they're tolerable.

Dx 9/14/2010, IDC, 2cm, Grade 2, 2/17 nodes, ER+/PR+, HER2-
Log in to post a reply

Feb 28, 2012 05:15AM Ruby- wrote:

Hi ladies, how was your Sjogren's diagnosed ? blood work ?  I have had my cornea scraped and lasered because of extremely dry eyes.  My mouth, especially during the night, is so dry, I wake up choking.  Yet, the ophtalmologist says there's no point confirming dx, as it would not change his treatment ....?  Should I follow-up with a rheumatologist - that would add yet another specialist to my list, now at 10.....!  What can be done about Sjogren's ?

Thanks your input, blessings 

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D

Dx 2010, IDC, 2cm, Stage IIb, Grade 1, 3/5 nodes, ER+/PR+, HER2-
Log in to post a reply

Feb 28, 2012 08:39AM msmouse wrote:

Maud, although I personally do not have Sjogren's my sister does. She has started seeing a rheumatologist & has her on drug therapy that has really turned down the severity of her disease. No  one likes having yet another specialist to see but in her case, it has really improved her quality of life. She isn't on one of the new bio drugs; she is using an old (aka cheap) therapy & it is working great for her. Very low SE's.

Neuroendocrine

Dx 4/13/2012, 6cm+, Stage IV, mets, ER+/PR-, HER2-Chemotherapy 07/05/2011 Adriamycin, Cytoxan, TaxotereSurgery 12/02/2011 Lumpectomy (Left)Radiation Therapy 01/16/2012 ExternalHormonal Therapy 04/01/2012 ArimidexChemotherapy 05/16/2012 carboplatinChemotherapy 08/17/2012 Gemzar
Log in to post a reply

Feb 28, 2012 10:02AM cocojo wrote:

Hi everyone,

As I posted nearly 2 years ago now...wow, time really flies by!! I have Sjogrens Syndrome and was diagnosed with Breast Cancer in June, 2009. After a partail mastectomy, chemo and radiation (I had 4/12 nodes affected) and now two years into Tamoxifen, it was the chemo that affected my Sjogrens, not the radiation. It really reduced my saliva...it was intolerable :( I take salagen three times a day and it has really helped with my salivary glands and even my eyes! I have also been on Plaquenil for more than 4 years now and it helps prevent imflammation. It's alot of medication, but I feel great.

So Maud, I would definitely consult with a rheumatologist and opthamologist...you need yearly follow-ups if only to make sure your condition is stable. 

P.S. I will be celebrating 2 years post treatment and cancer free March 3rd!! Life is GREAT!!!

Jo :)

Dx 6/2009, IDC, 1cm, Stage IIIa, Grade 2, 4/12 nodes, ER+/PR+, HER2-Surgery 06/29/2009 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)Chemotherapy 08/03/2009 fluorouracil, TaxotereHormonal Therapy 12/26/2009 TamoxifenRadiation Therapy 01/15/2010 External
Log in to post a reply

Feb 28, 2012 02:25PM Ruby- wrote:

Thank you Msmouse and Cocojo !  Before I moved years ago, I was seeing a rhumatologist who gave me Flexeril (muscle relaxant) for fibromyalgia but he never ever mentioned Sjogrens even though I was complaining about extremely dry eyes, even had to have laser surgery.  I stopped the Flexeril on my own thinking that was the culprit, but it was not. The ophthalmo has me using the Muro drops at night, if I don't, big trouble, and lubricate so many times a day, I lose count.  I drink gallons of water, always soo thirsty.  So, I guess, I better ask to be referred (to a new one this time) and ask to be tested for Sjorgren's.  I find that disease scary...and wonder if BC could be related somehow...Thanks again ladies 

Congrats Jo !!!! Cheers !!  I'm almost two years out, in a few more months 

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D

Dx 2010, IDC, 2cm, Stage IIb, Grade 1, 3/5 nodes, ER+/PR+, HER2-
Log in to post a reply

Oct 9, 2012 01:10AM DanaS wrote:

For Ruby:  I am an optometrist and my mother has Sjogrens.  I definitely would recommend seeing a rheumatologist.  There are other systemic issues in addition to dry eye and mouth that need to be addressed with Sjogrens.  Mom is on Plaquenil and feeling much better.  Her eyes are still dry, but Restasis helps.  She was recently diagnosed with infiltrative ductal breast cancer.  We are seeing the radiation oncologist today.  I will be curious to see what she says about her Sjogrens and radiation.

Log in to post a reply

May 15, 2013 01:06AM Didebo wrote:

I had the DCIS diagnosis bomb dropped on me yesterday, 5/14/2013. I had an immediate consultation with the surgeon and was told that because I also have Sjogrens that I was not a candidate for lumpectomy and radiation. My only option offered was mastectomy. I inquired about reconstruction but was also told that I most likely would not be a candidate for reconstruction either because the Sjogrens would impede the healing and increase the likelyhood of my body rejecting the prosthesis. I also carry the diagnses of MS, HBP, narcolepsy, and I had gastric bypass a few years ago. My overall nutritional status is excellent, though. Any guidance regarding the DCIS, mastectomy and reconstruction potential would be greatly appreciated.

Log in to post a reply

May 15, 2013 01:44AM Lily55 wrote:

The advice to you makes no sense, please get a second opinion.....

Dx 4/2012, ILC, 5cm, Stage IIIa, Grade 2, 7/14 nodes, ER+/PR+, HER2-Surgery 05/03/2012 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)Radiation Therapy 08/15/2012 ExternalHormonal Therapy 07/20/2013 Aromasin
Log in to post a reply

May 15, 2013 02:01AM cocojo wrote:

I agree with Lily55...get a second opinion. As you most likely read above, plenty of us have had lumpectomies or partial mastectomies with chemo and radiation. The side effects are not worse than for anyone else in the long run. Having Sjogrens might mean having to adapt your treatment post chemo/radiation...I had to start taking salagen for my salivary glands which were most likely further damaged by the chemo! As with any other chronic disease, you adapt and learn to live with it. I generally feel great and am enjoying life to the fullest!!
Good luck...with everything and think positive!

Dx 6/2009, IDC, 1cm, Stage IIIa, Grade 2, 4/12 nodes, ER+/PR+, HER2-Surgery 06/29/2009 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)Chemotherapy 08/03/2009 fluorouracil, TaxotereHormonal Therapy 12/26/2009 TamoxifenRadiation Therapy 01/15/2010 External
Log in to post a reply

May 15, 2013 03:05PM Didebo wrote:

Thank you Lily55 and cocojo. It didn't seem right to me either, so, I went with my gut instinct and I have a second opinion appointment 5/16/13. I'll post after that and maybe have a difference of opinion!

Log in to post a reply

Jan 31, 2014 04:20PM KMeade wrote:

Hello fellow Sjogren's Sydrome and BC survivors!

I was just diagnosed in the beginning of January with IDC, stage 1, and also DCIS stage 1. Based on my consult with my breast surgeon and with a reconstructive surgeon, I've decided to go with bi-lateral mastectomy and implants, with expanders first. My surg date is Feb. 14th - lovely, right?!  Oh well, the main thing I'm trying to stay focused on is that I'll be getting the cancer out and in the past, and moving forward to regain my health. I am also pretty scared about the whole surgical procedure, including how I'll feel with the anesthesia - how much nausea, dizziness, and will it really numb any awareness during the procedure and post-op. I sure hope so!  And, I also have low grade sjogren's with a very dry mouth, and I'm wondering how doing fasting and no liquids for 12 hours before will be with going into and coming out of surgery. Any input anyone could share from their experiences with the surgery, would be so appreciated - feeling just a bit anxious!

Log in to post a reply

Feb 1, 2014 04:37AM cocojo wrote:

Hi IKMeade!

I also have Sjogrens Syndrome and BC (diagnosed and treated 2009/2010) I had no problems pre op or post op. The trick is to sip on ice slivers....keeps your mouth hydrated! Make sure to tell your anesthesiste that you have SS. He or she should keep your ventilatory support durnhg tne surgery more humidified than is usual and tell them to put alot of lubricant in your eyes!! 

I don"t konw if your getting chemo and/or radiation post op, but the chemo did a number on my salivary glands :( Ever since my chemo, I have had to take Salagen to stimulate my saliva production. It's not the end of the world but it's a bit of a pain to take 3 to 4 pills a day, along with my Tamoxifen and Plaquenil! 

Good luck with your surgery and let us know how it goes.

Dx 6/2009, IDC, 1cm, Stage IIIa, Grade 2, 4/12 nodes, ER+/PR+, HER2-Surgery 06/29/2009 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)Chemotherapy 08/03/2009 fluorouracil, TaxotereHormonal Therapy 12/26/2009 TamoxifenRadiation Therapy 01/15/2010 External
Log in to post a reply

Feb 1, 2014 06:00AM KMeade wrote:

Hi CocoJo, Thanks so much for your warm and kind reply!  It helps to hear that you went through the surgery with having Sjogren's as well and didn't have any major problems - phew!!  Sucking on ice slivers sounds like a good plan - I'll definitely be sure to do that and tell my anesthesiologist about my dry mouth/sjogren's symptoms.  Having support from you and other women who had gone down this same path helps immensely!  Thank you SO much for sharing your experiences and advice!  :)

KMeade