Ocrevus round 8

[NanaCC]

Sitting in the infusion center starting my treatment. Second time I’m getting O at 5 month intervals definitely seeing the benefit no crap gap. I was starting to see a few gap blips but nothing bad. Hate I have to do this DMT. Woke up angry and having a really bad dose of poor mes. How many people here fighting cancer, will O give me cancer. Place is run by angels I should feel blessed. Depression in high gear, on new meds hope they help

[rjoneslaw]

I'm on O no I dont have cancer. I was told if I wanted I could do every 5 months if I wanted but I haven't had any crap gap issues so Im just staying with the 6 month

I have to keep in mind a lot of meds tell u there is a risk of cancer or something else but we still take that risk

[wolfmom21fl in reply to rjoneslaw]

this is very true. Some are much worse than others. I think anything that suppress the immune system is going to subject you to some risk, and then again it depends on the type of immune suppression as well. Mavenclad is one of the worst for cancer risk. You have to go thru all sorts of tests to even get approved to start on that one. I forget now which part of the immune system it suppresses but the risk is a lot higher for cancer to the point that you must go and have mammograms and other screenings done before you can even be considered for that one

[rjoneslaw in reply to wolfmom21fl]

that is a lot for that drug.

[wolfmom21fl]

scary stuff for sure

[BlanketTime1]

when i am sad, i let myself feel it and don't judge myself for experiencing the emotion. sometimes it's just a lot😢🤗. as you mentioned, you have a lifelong illness and even fighting back means you are exposed to other problems, so it's ok to be sad and/or angry.

this may sound silly to some, but the other day i almost cried b/c i wanted a chocolate fairy cake and couldn't find a gluten free/soy free/vegan one anywhere (i have coeliac and developed a soy and egg allergy in recent years). it seems like such a small thing, but for me it was about something bigger: my body betraying me.

so cry if you need to, when you need to, perhaps allow yourself to really sit in that moment before pulling yourself up again. it's hard.🤗❤️

[NanaCC in reply to BlanketTime1]

Thank you

[BlanketTime1 in reply to NanaCC]

🤗

[Elizt3]

I’d rather not have an infusion twice a year, but it’s a whole lot better than giving myself a shot every other day and then feeling lousy from the side effects of that shot every other day of the year. I am grateful that there are treatments that are more effective, compared to what we had 20 years ago.

[kwhompus]

No worries, You got this!!

[mrsmike9]

Prayers for you.

[Amore55]

Sending hugs your way!

[twooldcrows]

so sorry..have you talked to the doctor about all of this ...of course it has a different affect on everyone ...i have been really lucky for no problems ...feel so much better being on it ...take care and be safe ...love and happiness hopefully soon ...

[Spirit67]

Wish I could get my O every 5 months. That gap is killing me right now! Aside from the usual MS fatigue, I've been awake for the last 4 nights sitting in a chair at a Hospice House watching the love of my slowly slip away from me. And it's still 17 more days before my next infusion. 😭

[NanaCC in reply to Spirit67]

Tell your doctors, maybe they will put you on 5 month intervals. I’m so sorry about the love of your life, stress as you know can make MS symptoms worse. Peace

[Spirit67]

I know. At this point, I'm barely standing. But my husband had been suffering in one way or another for over a year. I am at peace that he is at peace. I will miss him dearly. 😢

[Raingrrl in reply to Spirit67]

I’m so sorry for your loss Spirit67 ! I can’t imagine how surreal it must feel when you thought he’d be the one to push you around in a wheelchair. Life sure throws us some nasty curveballs sometimes. Now is the time to take care of you, let yourself grieve your loss for however long you need and to find a way forward.

[Spirit67 in reply to Raingrrl]

Thank you. It's going to be hard getting used to being by myself. Now that the service is over and the family has left, I don't know what to do with myself. On a normal day, I would be finishing up with my husband's breakfast and rolling him in front of the TV to watch Gunsmoke - his favorite! I miss him so much 🥰

[pamgarner]

i know,you come out of the infusion center feelng very blessed.i have seen chemo patients,people taking anti-rejection drugs for a transplant.or for meds getting ready for a heavy duty treatment coming up for them.makes me sad that I complain.......