Chemo and Sjogrens

I am halfway through my chemo treatment. Lots of side effects. Sometimes I wonder whether the drugs make the sjogrens flare.
It seems no one in my medical team has much experience with it.
I have neuropathy, reunauds, tinnitus, fatigue and sensitivity. But they can’t tell what the source is.
I am on Folfox6.
Any experience out there?
Thank you.

Hi iabarbosa

A lot of the time they do not know what the source is. I hope the side effects are better soon.

Hi,

I do not have any experience with this at all, but I just wanted you to know that I am thinking of you and I hope you find some answers soon. I took a friend to many chemo treatments, and it is sure no picnic and I feel for you!

I’m not on chemo but I do suffer from all of the symptoms you mentioned. I’ve had tinnitus for several years with it slowly getting worse. I’ve been diagnosed with Sjogrens, Reynauds, Fibromyalgia and Lupus just recently. I struggle with fatigue daily. If I do the most simple things life taking a shower and getting dressed I have to rest for awhile. I will occasionally get bursts of energy and end up doing too much and pay for it later with total exhaustion. I know chemo will do some of the symptoms as well so hard to say what is causing what. Good luck with your treatments.

Folfox6 will do all of that to you and more not to mention what the disease you are treating can do.. Fatigue of course is the biggest side effect of chemo. I assume you are in close contact with your oncology team over bloodwork anemia etc, Given the nature of the type cancer treated by Folfox6, nutrition especially protein is critical. You should check with your centers nutritionist to make sure you are getting enough and are taking necessary supplements. 0.5 - 0.6 grams of protein per pound of body weight are necessary Thats a lot of protein.

Generally speaking, iabarbosa, autoimmune diseases such as SS tend to take some time off during a major event as you are experiencing. They don't necessarily go away, but they generally don't flare much.

This is one of my favorite resources: http://chemocare.com/default.aspx The call line to Clevland Clinic is good too.

Hello angel, my AL friend. I am sorry you are having a hard time.
I suffer from the same auto immune conditions you do, but also have RA and degenerative disc disease. Though not familiar with chemo (thank God), all of the symptoms you speak of, I suffer too. I am sure chemo symptoms are horrible, but just commenting to let you know they could be from our shared conditions.
May need to check out your MD in B’ham as my symptoms very rarely subside. Take care!

Hi. I had chemo 17 years ago. I'm very suspicious that the chemo started up my AI diseases because I was healthy up until that point. A year or two after chemo, my thyroid enlarged and I found out I had Hashimoto's. I went into early menopause because of the chemo and I noticed about 5 years after chemo, that my mouth and other areas were drying up. And so now I finally know that was Sjogren's. I hope your chemo regimen will not last too much longer?

Thank you for the kind words and good advice. I am working with a Palliative care group and I am focusing on overall wellness: diet, physical therapy and trying acupuncture. It is supposed to help with the neuropathy.

I have visited this website and it does have good advice.



tj1 said:

Folfox6 will do all of that to you and more not to mention what the disease you are treating can do.. Fatigue of course is the biggest side effect of chemo. I assume you are in close contact with your oncology team over bloodwork anemia etc, Given the nature of the type cancer treated by Folfox6, nutrition especially protein is critical. You should check with your centers nutritionist to make sure you are getting enough and are taking necessary supplements. 0.5 - 0.6 grams of protein per pound of body weight are necessary Thats a lot of protein.

Generally speaking, iabarbosa, autoimmune diseases such as SS tend to take some time off during a major event as you are experiencing. They don't necessarily go away, but they generally don't flare much.

This is one of my favorite resources: http://chemocare.com/default.aspx The call line to Clevland Clinic is good too.

Thank you for all your kind words and support. It helps a lot.

I have not seen any research on how chemo affects Sjogrens and vice versa. As you have pointed out the side effects are very similar to Sjogrens. Sometimes I do not know the cause.

Next treatment tomorrow #7 of 12. I hope to do better than last time.

Thank you again.

Sending positive energy for all of you.

What is your question actually?

I had the SS several years before the CA.

I don't take meds for my SS as I think the side effects make matters worse

but the Sjogrens symptoms are worse than the cancer (stage 4) ever dreamed of being.

However, the chemo is cumulative which is the whole point of it.

So I went off the chemo after 4 rounds in a year and a half. I couldn't function

never mind fussing about individual symptoms.

Life takes on what we call in my CA support group a "new normal"

Good for you, iabarbosa!! Go towards HEALTH!



iabarbosa said:

Thank you for all your kind words and support. It helps a lot.

I have not seen any research on how chemo affects Sjogrens and vice versa. As you have pointed out the side effects are very similar to Sjogrens. Sometimes I do not know the cause.

Next treatment tomorrow #7 of 12. I hope to do better than last time.

Thank you again.

Sending positive energy for all of you.

That PT will really pay off after you are done with the chemo. Sounds like a great group. Do any of you do chemo together? My daughter-in-law's group a regular hen party all 30 somethings. I don't know whether the infusion nurses are happy to see them come or happier to see them go LOL. Every once in a while I'm allowed to hang out with them.....

iabarbosa said:

......I am working with a Palliative care group and I am focusing on overall wellness: diet, physical therapy and trying acupuncture. It is supposed to help with the neuropathy.




btw

Acupuncture just about eliminated my neuropathy from the chemo.

Thank you for your reply.

I am doing the best I can to stay ahead of the side effects but I keep wondering whether the Sjogrens has anything to do with it.