Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Cytoxan


  • Please log in to reply
10 replies to this topic

#1 djr16489

djr16489

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 06 September 2009 - 04:42 PM

Hi everyone, I am new to this site and am looking for some comfort I guess. I am 51 and have Scleroderma, Raynaud's and have Pulmonary Fibrosis. I live in North Dakota and am seeing specialists in Boston. The fibrosis is in the early stage of alveolitis, although there already is the start of scarring. I started Cytoxan in August and am getting my next dose on Thursday. I don't think I have had so much pain in my entire life as what I have had this month from the chemo. Is anyone going through the Cytoxan or already have? I have tons of questions and concerns and frankly am scared of what I have started. But if this is my only hope to stop the fibrosis I have no choice. Thanks.

Deb

#2 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 06 September 2009 - 05:33 PM

Deb,
Welcome to the ISN forums. I'm so sorry you are here due to scleroderma and now your treatment of Cytoxan. I do know that have been a few of our members that have been treated with IV cytoxan. I'm assuming that is what you are getting. I was on oral cytoxan for about a month, but didn't handle it very well. We do have a page on Cytoxan and Pulmonary Fibrosis. If you haven't checked it out, please click on the link I provided. You might find some information that will help you.

I'm not doctor, so please verify all comments with your doctor. You mentioned that you are experiencing a lot of pain. I do know that scleroderma causes many people a tremendous amount of pain, so your pain may be due as much if not more to the disease than the treatment.

Please discuss your concerns with your doctor. Cytoxan has been found to be effective for scleroderma lung disease, so because it has helped some, it could help you. Just be aware of how you feel at all times and discuss any concerns with your doctors. Please let us know how things go and how you are doing.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 djr16489

djr16489

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts

Posted 06 September 2009 - 09:02 PM

Thanks much for your answer. I am thankful to have joined this site. Deb

#4 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 07 September 2009 - 10:49 AM

Hello Deb

Welcome to the forum although I am sorry it's because you're having a difficult time of it.

I have no experience of cytoxan but would agree with Janey's comments about the pain. Scleroderma can cause lots of pain a lot of the time, now that I do have experience of! :(

It's always difficult to know whether it's the illness or the treatment when we feel worse or have more pain, I am having this very dilemma myself. I guess our doctors should be able to guide us on this one but then again I think there are times when it's too close to call.

No doubt others will chime in about their cytoxan experiences, in the meatime take care and keep posting.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#5 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 07 September 2009 - 01:41 PM

I started on cytoxan as my first form of treatment. I did the oral cytoxan for about 4 or 5 months until I developed cystitis of the kidneys so had to quit it. I am now on Cellcept and the injection of Methotrexate. I too have terrible muscle pain and terrible fatigue. The methotrexate is my last hope and if it doesn't work (and it isn't) then there's not much else available to me. I go to the doctor on October 1st and I'm anxious to see what he says. If your pain is in your muscles then it's the sclero. I don't know if mine is from the sclero or the polymyositis, which I also have. All I know is that if I didn't have the pain patch and the pain meds I don't know what I'd do. I live in Minnesota and also see a doctor who used to practice at John Hopkins and is now at the University of Minnesota. He is one of the best and I know I'm in good hands. I wish you good luck and all you can do is keep trying whatever they can to help you. It's an ongoing battle that's for sure.

All the best to you.

Warm hug,
Peggy

#6 Gidget

Gidget

    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 08 September 2009 - 02:55 AM

Hi Deb,
I am not sure if you are on the oral or IV cytoxan. I did 6 monthly doses of the IV cytoxan and here are is what I think helps.

First drink lots of water -- you want to flush the drug out of your system. By lots of water, I mean an 8oz glass every 2 hours. And try to do this for most of the month. I used to do it for 2 weeks and then got lazy the last 2 weeks. The other thing is to make sure you do absolutely Nothing the day of the treatment and the day after. If you do this, by the 2nd day you will start to feel better. If you don't, then the cytoxan will knock you on your butt for most of the month. That is why most people schedule the treatment for Friday, so they have the weekend to do nothing and are feeling better by Monday. Once, I had the cytoxan and then caught a plane the following day for a doctors appointment and I just could not get my energy back up again for the whole month. So, I think it is very important to get your treatment and then plan to lay around the house literally for the next 2 days. It will make a big difference if you just take this little bit of time.

In any event, I liked being on the cytoxan once I knew how to use it. It will make your skin softer and your breathing will feel better -- I mean, you can take a deep breath and it won't hurt. I wanted to stay on it in quarterly doses but nobody would Rx it. I am happy that you have found a specialist even if you need to travel. I fly lots of places to see specialists that I am happy with. Good luck. Gidget

#7 susieq40

susieq40

    Silver Member

  • Members
  • PipPipPipPip
  • 129 posts
  • Location:Montana, USA

Posted 11 September 2009 - 01:08 PM

Hey, I too am newly diagnosed and starting on cytoxan. I am scared but think it is the best option. My lung disease part is the most important part to get treated at the moment, so here I go! Next Friday. I agree with Gidget, I am getting the cytoxan on a Friday and resting the whole weekend next week. This has been quite the adjustment in my life. I have a house full of kids and this is knocking me on my BUTT! I look forward to hopefully feeling some better. I hope we can keep in touch and let each other know how we are doing, cause it's good to have support and a friend to experience this thing with..I totally love this site, and am so glad for the support of those who know exactly what I'm going through. Good luck and my sincere wishes of better health are with you!

Susieq40

#8 Lauriejill

Lauriejill

    Senior Bronze Member

  • Members
  • PipPipPip
  • 31 posts
  • Location:Encinitas, California

Posted 15 September 2009 - 06:24 AM



Hi, I completed six months of IV Cytoxan last December. I have everything you do and I have to say the Cytoxan really helped my lungs. I had developed fibrosis, my Pulmonary Function Tests were not good (down to 47% of normal) and I had shortness of breath. After the treatment my lungs sound clear, my PFT's are normal and no shortness of breath. I hated having to do the Cytoxan and put it off for several months after it was recommended.....but I have to say it was great for me. I was extremely tired during the treatments and slowly my energy has been getting better. The Nurse Practioner for my rheumatologist said it takes several months after you are finished with the treatment to feel really better. It worked for me and breathing is a great thing!!!

I really hated the idea of having "chemo" (I still take methotrexate shots weekly) and worried about the side effects and the stigma and the feeling that I am sicker than I want to be ..... I was soooo tired......but endurance paid off for me so I am sharing the experience of having gone through it with positive results.

Hope this helps.
Lauriejill

#9 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 15 September 2009 - 07:48 AM

Hi Deb

I'm sorry to hear that you've had such a problem with the Cytoxan. I also have interstitial lung disease & am having 6 months of IV Cyclophosphamide (Cytoxan) & although I'm not exactly ecstatic about having the treatment I haven't really found much of a problem with it.

I go for my third treatment tomorrow & as Gidget says it is absolutely imperative that you drink throughout the infusion & afterwards in order to flush the toxic chemical through (one of the nastier side effects is causing bladder infections & worse!!).

I had a far more awful reaction to the anti sickness drug the first time; dreadful constipation which I'm sure was caused by the anti sickness pills the nurses insisted I kept popping at the slightest sign of nausea. :rolleyes: Last month I simply put up with the slightly sicky feeling by going off & doing something else but at least I wasn't constipated.......a great result in my opinion!!! ;)

For a couple of days afterwards I feel as if I have a hangover; I suspect my poor liver wonders what I have done to it & was trying to expel the CYC from my system but then I've been back to normal after a couple of days. When I was first told about going on CYC I was most worried about my hair falling out ( I have long naturally curly hair & I don't do hair loss!! ;) ) but so far thankfully my hair seems to be unaffected.

I do, however, feel that my breathing has improved........however I was extremely fortunate in that I was very fit anyway & so although my Pulmonary Function tests were down to 48% I've never needed to use oxygen as I'm probably fitter than 80% of the population with sound lungs due to my spending almost my entire life at the gym (I probably need to get out more & get a life!!! :lol: )

I do hope you will have a better reaction to the Cytoxan next time you have to have a treatment & that you will soon feel better & will see an improvement in your breathing.

Kind regards x

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#10 newbec09

newbec09

    Newbie

  • Members
  • Pip
  • 1 posts

Posted 20 September 2009 - 07:27 AM

Hi Deb,

I am 52 and have the same symptoms after the cytoxan treatments. You are the first person that I can relate to with these treatments. I started in July and was surprised at how painful it was. I could did not find anyone else describe it this way. I do have pain from the scleroderma however, it seems to be amplied by the treatments. It starts about six hours after treatment. It is intense for the first three to four days and then begins to reduce in intensity.

I am so relieved to find out that someone else is going through it too (not that I wish anyone else this pain :( , I just thought I was alone in feeling this way). I travel to Boston for my treatments as well. I will be having treatment number four in a couple of weeks.

I, like you, wanted to know if anyone else has been through this. I am on oxygen because of the damage to my lungs and I am hoping these treatments will be worth it. I have read many positive things about them and hope that my body holds up to them.

Please know that you are not alone in the process :).

K


#11 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 20 September 2009 - 10:36 AM

Hello K

Welcome to the forum I am glad you've joined us!

I hope that the cytoxan works for you and that the side effects eventually become minimal. Hopefully the results will be worth it for you.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)