SCT talk

[ryersongirl]

Well, I went to the doctor today and from the reports she's seen including the liver ultrasound...she thinks I've relapsed. Of course, she says they have to wait for the PET and CAT scans to be done next week, but she's already talking SCT. I mentioned Rituxan, but she doesn't seem to be too keen on it. She will have somebody speak to me regarding the SCT. She tells me that the longer I wait to have the SCT the harder it is. This is not what I wanted to hear today. I've always been afraid of the SCT and I've put all my hope on the Rituxan...now, I'm just so depressed. I can't even enjoy the holidays. Is the SCT really that bad? What is the procedure? Do I have to be in the hospital for a whole month? Any input will help.

[AMD45]

I had mentioned Rituxin to my onc as a possible treatment and -- although I can't remember what it was -- there was something about my HD or some of my test results that made me a non-candidate for Rituxin so you might want to find out why she's so against it for you.

As for the SCT, I will say that it's certainly not something I would choose to do just for kicks but it is more than doable. I had two -- a mild one followed by the "heavy duty" one most people on this board have a month later -- and there were times I hated (and I asked for LOTS of drugs during those time) and I got away without any mouth sores but I was a fanatic about doing the mouth regimine. I totally understand not wanting to have an SCT but don't let your fear of it get in the way your treatment. You, like most of us I'm sure, have found that you are stronger than you ever thought yourself to be. You can do an SCT -- it won't be a cake walk -- but you can do it more easily than you think.

[ag2006]

I know how you feel as I've been there. However, after the shock wears off, you cry, you get angry then you become strong again. My SCT was doable, it was a challenge, there were good days and bad days and half the time I was out of it thanks to the drugs they gave me, but I did it. In retrospect, I had expected worse because the word "transplant" conjers up some major negative visuals for me. It's no picnic, but if your life depends on it, you find the strength to go with it and fight again with all your might. When I relapsed in April, I thought I did not have any fighting spirit left in me, but I found that I was strong and that I did not want to let this bastard beat me because I have too much to live for.

I truly hope that your scans will show the opposite, but if you do relapse, know that as tough as SCTs can be, they are doable and many of us do well. Let us know if you have any questions, keep us updated and most of all, keep the faith.

Best Wishes,

Anne

[SarahSmile]

Oh, Olga, sweetie...I sure hope this is a false alarm. If you are facing a relapse, however, I want you to know that you absolutely CAN get through an SCT. None of us ever wanted to, God knows, but if we can do it, you can, too. I promise.

Click here for a link to the relapse thread. (I'll also bump it up for anyone else facing a scare or a reality.)

I've written a lot here about my SCT experience, so if you do a search on "SCT" with my username, going back to June, you'll find a LOT about my whole experience. You can also check out my blog by clicking here. I blogged my experience also -- as did some others here (like Anne and Cliff, off the top of my head.)

I spent 3 weeks in the hospital, including 8 days before the transplant (7 days of chemo and one day of fluids.) You have to be prepared to spend a full month, but a lot of us get out early for good behavior! (Walking while you're in there really helps a LOT.) There have been a couple of folks here who have had it performed outpatient, but most of us had it done inpatient and didn't regret it. There was a discussion in a thread by Jeanetta (that's her username also) about inpatient vs. outpatient, if you want to do a search for it. I wouldn't do it outpatient, but it was a positive experience for some who did it.

The SCT process, in short, is this, cut and pasted from a post I made elsewhere on this board:

The star of the show with an autologous SCT is the high dose chemo they give you in the hospital. The first step is to try to get you back into remission -- or close to it -- with "salvage chemo" (they're trying to salvage a remission state.) They're really looking for what they call "chemo responsiveness" here -- that is, a 50% or more reduction in the tumor and hopefully a NED status on a PET. Then, after they've identified that the cancer isn't present in your bone marrow (the place from which they're collecting your stem cells) you take growth factor shots to put your bone marrow into hyper stem cell production (stem cells are the baby cells your body produces, that grow up to become WBCs, RBC, platelets, etc.) in the hopes that they can collect enough stem cells to give you the means to recuperate from the killing high dose chemo they'll give you in the hospital. They want to slam your body with all this chemo so that they can kill off any microscopic cancer cells that are not identifiable via scans. Then they reinfuse you with the stem cells to give you the ability to recover from the chemo from which you could NOT recover had they not collected, saved and frozen the stem cells your bone marrow could not produce after the high dose. It takes about 12 days for the body to "engraft" (assimilate and make use of) the stem cells, and most folks have this procedure inpatient, but some do it outpatient. (Mine was performed inpatient and I thank God for it. I actually switched from an outpatient facility to an inpatient one in the middle of my salvage chemo so that I could be assured of round-the-clock care.)

Most people also get radiation at some point in the protocol. In my case, my SCT was performed at Emory Hospital in Atlanta, and they follow exactly the treatment protocols of Sloan-Kettering, so I had radiation to my tumor site BEFORE my SCT -- between collection and going into the hospital for high dose and the transplant. A lot of people get radiation a couple of months after the SCT, though.

It's like the ultimate immune system "Do-Over!" I was in remission for 14 months after having responded ideally to 6 months of chemo for my Hodgkins. When I relapsed, it was in one site only, so there was a brief, initial thought that we'd radiate the site and that would do it, but after consulting with one of America's top Lymphoma experts, Dr. James Armitage, I learned that this would only be a temporary fix. He said that my only hope for a lasting cure would be an SCT.

To anyone reading this: I hope you never need one, but if you do, know that it's something you can get through. It's hard as hell, but when the element of choice is removed, it sort of simplifies things, you know? Your sense of purpose is clarified and you just get through it....just as you got through the first-line treatment. We are all of us stronger than we know.

I would strongly recommend that, should you find that you're moving forward with an SCT, you have it performed at the best, most expert and SCT/BMT-experienced hospital you possibly can. You deserve nothing but the best care available to you. This is a very sensitive, very serious procedure, and you want to be taken care of by seasoned, caring, and knowledgeable professionals who have the frame of reference and experience to anticipate and respond to any issues that can and will arise.

Just so you know, today is my Day +30 (30 days post-transplant) and yesterday I cooked literally everything for our Thanksgiving dinner (we had a few friends over) -- I was on my feet for about 8 hours and worked HARD, in addition to going on a few short walks around different points in our neighborhood. My counts are GREAT and I don't have to wear a mask in public. I have the green light to eat anything I want (except for raw meat or fish) so my diet is normal -- I just can't really eat much of anything yet. But that will pass!

I just want you to know that the SCT process seems scary, mysterious and complicated until you find out that it's not. Well, it's still scary of course -- but then so was chemo when we first got faced with that! I strongly urge you to read that relapse thread, and to spend some time doing some searches on my old posts -- not only to get info on my experience (because I detailed the treatment plan) but also because other SCT'ers generously reached out to me and gave me SOOOOO much information and support which could be helpful to you too! I got rediagnosed around June 19-21, so start looking around then. If you need any help or anything at all, feel free to contact me.

Be strong, see this as a means to an end and a temporary chapter, and break it up into manageable, time-specific goals -- that way it's less overwhelming. Celebrate your achievements along the way, and be kind and gentle to yourself. Ask for help when you need it, and let the people who love you step up -- they want to but might need help understanding what you need. Be present here and use all of us who've been through it to help you. Lean on the board here for support -- we all truly get exactly what you're going through. And if you're married or have someone, be sure to be open and honest with them about your feelings while being reassuring to them that you have it to get through this and on to the next chapter of healing afterwards. They're just as freaked out as you are, if not more so -- just go into it in step and then work to stay in step so neither of you feels alone in it.

I'm here for you, Olga -- I was so happy to see you back here posting, but then heartbroken to hear that you're facing a potential relapse. I sincerely hope it's just a false alarm.

Keep us posted, ok??? You're in my prayers, girl.

Big, squishy hugs,

[ag2006]

Sarah, perfectly written! This will help future SCT patients. Thank you!

Best Wishes,

Anne

[ryersongirl]

Thanks Sarah,

You are a sweetie for posting this. I just hope and pray that I have once ounce of your courage. I'm very nervous, but after reading the responses to this post I am assured that I will have plenty of support.

[maureenmcq]

Sarah! I'm so glad to see your post. Been haunting your blog, girl. Worrying a bit. And here you are cooking Thanksgiving! I'm so glad!

[MaryIN]

Olga - I just saw your post and I'm so sorry! If your are LPHD, and you're pathology report says you're CD20 positive, you're a candidate for Rituxan. The last time I saw my onc, he has just returned from a conference where they were deciding whether or not to make Rituxan a standard of care for CD20 positive NHL. They decided NOT to - even tho Rituxan has shown to prolong remission, they don't have conclusive studies that it improves survival stats. Bottom line, from him, is that it will be up to the patient to ASK for that treatment and plead their own cases on an individual basis. I guess it's a spendy little drug and they're not willing to hand it out without someone asking for it.

I know in my case, they wouldn't have just used Rituxan. It was an adjunct therapy to rads. And, like you, if this one doesn't do the trick, I'm headed for SCT as well.

I guess all I'm saying here is that Rituxan is worth investigating, but it may not be enough for a persistant cancer like our stupid subtype.

Please keep us posted and keep the faith!!!

Hugs,

Mary

[jeannetta]

Hi.. I have not read the replies yet but I am just starting my SCT right now. After they confirmed my relapse, they pretty much started me as soon as they got approval from insurance. They just said the sooner, the better. I thought I would be in the hospital for the holidays but my transplant doctor told me that he recommended I do it as an outpatient. So far I have had my Neostar line put in, had all the Neupogen shots & then had my stem cells collected. I start BEAM chemo this Tuesday & get my stem cells back on Dec 5th. Good Luck to you!!

[dtbruin83]

There has already been a great deal of very good advice shared on this topic by some very good posters.
I will add my own brief “two cents” worth.

If you lack confidence in your doctors, now is the time to start looking for others, or at least a second opinion. I worked with my insurer to find a doctor and hospital for a second opinion and, ultimately, the SCT procedure. My insurer was directing me to the top hospitals across the US for SCTs (in terms of numbers of procedures per year and rates of success). I ended up at Northwestern University Memorial (downtown Chicago and close to home). Many SCTs, however, are done far from home. The key here is that you have absolute confidence in your medical team.

During treatment, or the time leading up to an SCT procedure you should do your best to treat yourself well and avoid stress. I decreased my work schedule and responsibilities considerably. I kept enough to stay informed, but let others do much of the “heavy lifting” at the office. I used time away to read books, spend time with my kids and to generally relax as best I could. I treated myself to afternoon trips to the movie theatre, an activity I found to be very relaxing and enjoyable.

Eat well at every opportunity, but also eat wisely. During the SCT procedure, I found it difficult to eat much of anything. Afterwards, I had a terribly burned esophagus and struggled with even sips of water. Pills became a major challenge upon discharge from the hospital. Melt-in-the-mouth Zofran was a huge benefit!

Ordinary people with ordinary lives can do extraordinary things when called upon. You can too! Take this as opportunity to face a challenge and succeed! You will be a better person for the experience.

-Dave