Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Kira on May 20, 2014, 12:12:09 PM

Title: Sjorgrens and Cancer
Post by: Kira on May 20, 2014, 12:12:09 PM
Hi Everyone,

My name is Kira and I'm new to the forum. I live in South Africa and have had Sjogrens for many years. I have recently been diagnosed with breast cancer, on my right side.  The first op I will be having is a Sentinel lymph node biopsy, this week.

Can anyone help with advice/suggestions on how best to cope pre- and post-surgery & with healing, while having to cope with Sjogrens as well?  My throat and mouth are extremely dry & have recently become worse, as my tongue seems to burn most of the time.   I am not on medication for Sjogrens. There are no Sjogrens support groups around here.

Thanks in advance. Any help or advice will be really appreciated. :)

Title: Re: Sjorgrens and Cancer
Post by: ohiolady on May 20, 2014, 07:52:20 PM
Mira, is the medication Evoxac available to you?  This will help greatly with the dryness.  I had kidney cancer and was very nervous about my dryness and surgery.  I got through it better than I imagined.

Wishing you the best!

Anna
Title: Re: Sjorgrens and Cancer
Post by: angeldancer on May 20, 2014, 09:26:51 PM
Hi Kira.  Wishing you the best.  I am happy that you found this forum.  The people here will become your overseas friends.  Having gone through surgery in January and undergoing my cancer chemo, I  can say I have learned alot from this forum and they have been such an encouragement to fight on.  I have a different cancer than you.  I don't know much information you can have on the surgeon but make sure it is a specialist that knows every inuendo for your type of surgery.  Arm yourself with our support and we will be in your presence in spirit.

Praying for you
Angeldancer
Title: Re: Sjorgrens and Cancer
Post by: Dolly Dimples on May 21, 2014, 01:24:51 PM
Welcome Kira. if you look at some of the back postings, you will find lots of helpful advice that will help with the dryness, and most other problems that we Sjoggies endure.
 I am most surprised to see that you are on no meds at all, if you have had SS for years.  Your Doctors should be able to help you on this. I have had very dry symptoms a long time ,
   I try everything and anything that is for dryness.           
     You will cope you know,   you have to!
             The two previous posts will show you just how much goes on in our group, and they are great examples to follow.
                              My best wishes to you and Angeldancer and Ohiolady.
                                                                                            Good luck, Dolly x
                                       
Title: Re: Sjorgrens and Cancer
Post by: Kira on June 19, 2014, 11:22:55 AM
Thank you Anna, for your good wishes. I have purposely avoided meds and I want to refrain for as long as possible. Thus far, while my dryness has increased over the years, I have adapted to the changes & am coping. Because I am not on medication, I can listen to what my body is telling me. I realised many years ago that tap water (even from a simple filter) was not as quench thirsting, so I compromised, to reduce costs & alternate between filtered tap water & bottled spring water - which contains no chlorine/a fraction of fluoride.  Eventually I want to get an expensive but more effective home filtration system. You are in my prayers, Anna.

Thank you, Angeldancer, for your lovely message: I am glad I have found this forum & I look forward to making friends here. I am seeing a breast cancer specialist. I am praying for you, too, Angeldancer and I wish you all the best with your treatment. Being a spiritual person myself, I find this also helps me through all this.

Thank you, Dolly, for your good wishes. I will ask my daughter to help with looking at some of the back postings to find helpful advice for the operation. I am thankful that thus far I have coped without meds. There are no Sjogrens specialists here & its not very well known. Yes very true, I did cope for this op but was lucky to have the op early morning, which of course helped.  With best wishes to you.
Title: Re: Sjorgrens and Cancer
Post by: machenza on June 19, 2014, 05:25:48 PM
Hi Kira,

Welcome to the board. I am sending prayers and best wishes your way.

You are a brave lady to be able to cope with Sjo without any medications. I caved in to the dryness and am taking a pilocarpine (rendered essential drug by the WHO, so it should be available to you), and might be starting Evoxac due to deepening dryness, but declined anything else for now.

Many hugs,

Nellie
Title: Re: Sjorgrens and Cancer
Post by: Tivia on June 19, 2014, 05:50:27 PM
try to get on evoxac or salagen to help with the dryness, as for the rest caring for the cancer is of the utmost importance. If you have a breast cancer clinic anywhere near you I would go through them for information and contacts. I was lucky to have one of the best breast cancer surgeons in the country in my old town. And one of the best breast cancer treatment facilities. I was lucky in that it was early and was all removed in one sweep. Do talk to your doctors about meds for sjogrens dryness, and get all the information on your type of breast cancer, the best way to treat it, and who should be doing the surgery. Do you have family to help you through all this, it can be overwhelming on your own.
Title: Re: Sjorgrens and Cancer
Post by: grammad97 on June 19, 2014, 06:06:47 PM
 Hello Kira-
While I want to welcome you to the group I also want to tell you I admire your strength and courage dealing with multiple health issues.
Do you have access to a humidifier? Humidifiers help with eye and mouth dryness by keeping the room you are in moister air.
Biotene products are great for helping the mouth/teeth maintain some moisture.
Prior to your surgery will you meet with your doctors to discuss whet you need to alleviate the dryness as much as possible?
I would also ask each nurse to be aware of your sjogrens and have them help keep you comfortable also.
Evoxac or salagen would help for sure with the mouth dryness. . There is also pilocarpine eye drops which can be used as a swish and spit regimen for hour mouth.
Biotene products are over the counter supplies( meaning you do not need a prescription to get them.
Definitely read the old posts who have already