22 Weeks Home (Day +168)- Acid Reflux Returns & HSCT Failure Rates

I’ve decided that once I hit the 6 month mark, +180 days that I’ll stop blogging weekly and switch to blogging each month, unless I feel the need to blog more often if something comes up.  The reasoning is that I really don’t have much new to discuss each week and as with most HSCT blogs, not many people care to read the after posts, it’s just the way it is.  I can see how many people read each post and while many of my actual HSCT posts done in Russia still get numerous views each day, the post-HSCT ones aren’t super popular, I think most people reading them are those that are also in the recovery stage and are just curious at what all to expect.  That being said, I’ll discuss my week as well as discuss HSCT failure rates, always a hot topic on the groups.

So this post is being posted a few days later that I normally do and that is because the last few days haven’t been the best for me.  Acid reflux returned with a vengeance on Wednesday.  It started Tuesday afternoon and then got crazy on Wednesday.  It was so bad that it made me horribly nauseous to the point I could hardly function and spent a fair bit of time in the bathroom dry heaving, a wonderful sight I’m sure. After popping several generic prilosec pills throughout the day it finally subsided more that evening, and then hasn’t been quite as bad the next couple days. Acid reflux is one of those things that many HSCT veterans experience in the first year or so of recovery.  For some people it is constant throughout, for others it is off and on, and then for some it can come on crazy insane and last a couple of days.  Most veterans end up taking some sort of acid reflux medication once or twice a day for the first 3-6 months, many for up to a year, and some have to continue on it afterwards.  Mainly it’s because the chemo damages your stomach lining and then goes crazy on producing acid and it takes a while for your body to get back to normal. Many people claim to have good luck with solving that issue after adding high dose probiotics back into their system on a daily basis after they hit the 6 month mark.  This also seems to be a bigger problem for those that stay on antibiotics for several months after treatment.

So my diet really went to hell this past week because of that.  Because when you are nauseous, nothing foodwise seems appealing, and trying to actually stomach super healthy food is impossible. I’m gradually starting to eat healthier food again and it appears the acid problem is decreasing again for a while.  I’m going to start taking more potent probiotics soon to try to boost my gut health.

And then with that anxiety levels have increased as well.  Which anxiety issues seem to be quite prevalent after HSCT.  I think that is caused by a number of things.  Chemo, expectations, side-effects, stress, pondering did it work, was it worth it, the list can go on forever.  Mine isn’t too bad and I’m dealing with it via meditation and trying to reduce stress.  Many people however do turn to medication for that.  Depression is not something that I am dealing with, but that is another issue that is super prevalent after HSCT.  I think these are the two most overlooked side-effects that nobody ever talks about. But there are numerous side-effects that are really downplayed in regular groups because veteran’s don’t want to scare people away from doing the procedure or those posts are deleted by moderators.  I do eventually plan to do a blog post listing all the side-effects that I’ve seen people discuss in the veteran’s group, because unlike others, I feel people have a right to know what they can expect afterwards.  Recovery is downright brutal for many people and probably half of everyone who undergoes HSCT ends up questioning whether or not they should have done it the first year afterwards because side-effects and the roller-coaster really can be just that horrible for them.  But that’ll be another post at a later date.

Now onto the topic of HSCT failure rates.  I decided to discuss this in this blog post given I seen that a member of the Russia HSCT group started a new group for people to join that HSCT failed for.  This is another taboo topic on the groups, and I know that in several groups people are deleted from the group if they say treatment failed for them and in other groups if anyone dares bring up the topic of treatment failure the post gets deleted.  But failure can happen and it does and everyone should acknowledge that before undergoing treatment because you can be the person it fails for.  It could happen to me, it could happen to anyone treated with me, it could happen to anyone, or it could not.  MS itself is a fucking mystery and for some people the treatment just doesn’t work.  Why? It’s hard to say, but most failures do seem to occur in older patients that have had MS a long time and then of course that also happens more in patients that are SPMS or PPMS.

I cannot talk for other locations, only for Russia, but in Russia Dr. F tells everyone when he accepts them for treatment how effective he feels the treatment will be for them. Numerous things are taken into account during this time, how long you’ve had MS, what type of MS you have, how old you are, EDSS score, how aggressive the MS is, etc. For RRMS the typical success rates are 80-90% depending on how long a person has had the disease.  For those recently diagnosed Dr. F feels the success rate is around 95%, it’s just what he has seen from his own experience. That is why so many people say that you should receive HSCT as early as you can in your diagnosis, the earlier you get HSCT, the better chance you have at stopping it.  Now  everyone knows that in all the clinical trials for HSCT around the world, they will not treat SPMS or PPMS because they feel it isn’t effective, although other doctors believe that it can work for those types, just your chances for success are not as high.  And that is why I assume they don’t treat those types in the clinical trials because if you don’t have a certain percent of success, you will not gain approval to have this as an actual MS treatment.

As for actual failure rates however, the data out of the clinical trials does put that between 10-20% for RRMS, so a 80-90% success rate.  Clinical trial data is probably the most accurate because they follow strict criteria.  Dr. F and the Russia facility have published papers on their past results as well that you can look up for more information and then of course Dr. Burt out of Northwestern has published papers as well. What are the success rates for other facilities around the world?  That is really hard to say when it comes to facilities around the world because none of them can actually track the results of their international patients.  Most facilities have only been treating international patients for the past 3-4 years, Mexico only about 18 months, so not really enough time to track success/failure rate.  I know Russia does send out emails to veterans every so often to track their progress for their own records, but it is up to the patients to actually respond.  And then when it comes to SPMS the success rate falls, it’s hard to say exactly what it is, but I’ve heard the success rate being between 60-80% for SPMS depending on a lot of factors.  Then when it comes to PPMS I’ve heard rates as low as 40-50% success rates, to up to 70%. Most patients treated for SPMS and PPMS have been treated in the past several years, so I don’t think there will be exact answers for that for another couple of years, given the 5 year mark is normally considered the point where HSCT succeeded or failed.

In the end what it comes down to, is that HSCT is not a cure and it does not work for everyone.  HSCT halts disease progression and it basically is like a cancer treatment where your MS is in remission, and you hope that it stays in remission for life, but you never know if something can make it come back.  Many people who have new lesions or progression after HSCT do opt to have chemo top-offs to try to put the MS back into remission.  This works for some people, it doesn’t work for many others. Some people feel the follow-up Rituximab infusions recommended by Mexico guarantee that the procedure will work for them, but that type of chemo only works on B cells and MS also affects T cells, so usually when top-off chemo is recommended when new lesions are found, it is usually a type that kills off the T cells. I do however find it sad and sickening that people are deleted from certain HSCT groups when they discuss that the procedure failed for them and it’s ridiculous that the topic cannot even be discussed on many groups without the posts being deleted, or at least heavily moderated to the point where it makes it look like HSCT is a miracle cure and the procedure rarely fails. But then again, god forbid anyone mention certain bad side-effects on groups, that can also get you banned from the group and posts deleted.

Okay enough of that, now back to me, how am I doing otherwise?  At this stage in recovery I think I’m doing pretty good. My oldest kiddo has a viral stomach bug and has puked numerous times today, so I’m hoping that I don’t catch that.  I’ve been avoiding stores during busy times to try to avoid catching anything since I’ve determined that most people are disgusting and really don’t cover their mouths when they cough and then wipe their face with their hands and then wipe their nasty hands all over everything. Hand sanitizer is my friend.

I’ve been staying pretty steady with the improvements I have had, nothing new.  Keep having setbacks with being sick or acid reflux, but such is life.  Recovery is a roller-coaster so you just gotta take it one day at a time. Then had my period yet again this past week, a bit earlier than its new normal schedule, so that brings back the hot flashes, chills, night sweats, all those fun things.  Hoping to feel better this upcoming week and get back to my healthier eating and exercise.  I guess all the ups and downs keep life interesting.  Then a couple of pics from this past week just for fun.  A sunset pic and then a pic of 3 BASE jumpers about to land after jumping off the Perrine Bridge.

 

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About Cat

I'm an outdoorsy gal, wife, mom of 2 and MS Warrior. I underwent HSCT in Russia in April/May 2016 to halt my MS and documented my entire journey while I was there in my blog and am now continuing to blog through my recovery.
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4 Responses to 22 Weeks Home (Day +168)- Acid Reflux Returns & HSCT Failure Rates

  1. agirlwithms says:

    Thank you for sharing this info, Cat. I am currently fundraising for hsct and some of the stuff I see going on that you have mentioned has got me questioning my decision. I’ve put a lot of work into this already and the news wants to do a story on me.. Worried about saying yes to them and then changing my mind before my date 😕 I am in my 20’s with rrms, so I think I might take the chemo well, but worry about the what ifs.. 😔

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    • Cat says:

      I think everyone is worried going into HSCT. But as of now HSCT is the only treatment out there than can halt progression. The chemo itself isn’t that bad for most people and younger people with lower EDSS scores tend to handle the treatment better than older people or people with higher EDSS scores. But I think a lot also depends on attitude. Chemo does make some people sick and tired, but it’s only 4 days and not too bad. The recovery really is worse than the treatment and it can be a rocky road. It’s typically not bad at all for those with lower EDSS scores, you gave the typical issues related to the chemo but overall it isn’t bad, but there is a very long list of side effects that can happen that people need to consider. I’ll be doing a post on that in a week or two with the real list of side effects, compiled off the veteran’s group. The list everyone posts is alright, but doesn’t list everything and it downplays a lot of things. I personally feel HSCT is the best option and it is something that I would do again in a heartbeat, but there is a lot to consider ahead of time.

      Like I commented to the poster below, the thing that really concerns me the most right now is that many people being treated in Mexico are not reaching neutropenia at all, which almost all doctors say has to happen for the treatment to be a success, but the doctors in Mexico say that it isn’t a big deal. This is being horribly downplayed on the groups and anyone who speaks up about it gets banned from groups or their posts get deleted. I think that is something that everyone considering HSCT needs to know about to take into consideration on where they want to be treated. I am concerned that if one location is not doing a correct HSCT procedure it will give all the international facilities a bad name and people will think the whole treatment is another scam.

      I think in the end with HSCT though you have to go with your gut. HSCT is really the only real hope to stop MS progression, but it’s also not for everyone. I think if you for sure decide to do the treatment, then you should do the news story and help raise awareness about HSCT in general and also help with your fundraising. Many HSCT vets are trying to raise awareness about HSCT, but the MS community in general is not very open to it. Good luck with your treatment if you decide to do it. I’m 100% glad I did it.

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  2. vanessa aguilar says:

    Hi Cat, your blog is exactly what we need to hear! We need all of the information whether good or bad as hsct will affect us for the rest of our lives. I have always felt that we should have access to the veterans site to hear the real life stories. It’s a shame that we are blocked. We are spending our life savings believing that it can help us and that the chemo etc is the worst part. It seems that afterwards, can be just as bad as the procedure. We need to realise whether we can cope with the after effects, for long periods afterwards. Sorry to hear you are feeling sick and sore. Have you tried Gaviscon Advance medicine. It helps neutralise the acid and lines the stomach. Also, Check with your doctor if and when you are able to take a probiotic called VSL#3. It has 45billion good bacteria in each sachet. Here it costs about $3 a sachet. I took it once a day for a month. I found it useful. It was recommended by my husbands consultant for him as he has Colitis. It’s the best one that I’ve seen. It’s not one of those ones that are out on the counter. You have to ask the pharmacist and it needs to be kept refrigerated. I have SPMS and diagnosed for 18 years and am 69 so from what you’ve said, my chance of stopping the disease is lower than many other younger members. There’s no other option to halt the illness and all my arrangements are now in place to go to Moscow for the medical assessment on 28th November. I’m sure that if Dr F feels it’s not viable for me, he will say so. I have an email saying 50-60% chance of improvement based on my medical records that I sent to him, but when they carry out the medical, they can give me the real odds. I think it’s actually better to read the veterans blogs as the other ones give facts but some people sail through the procedure and others struggle but know it’s only for a month. The later problems can go on for months or years. Keep well and hope you’re feeling better soon. xx

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    • Cat says:

      I can honestly say that I feel that people should be able to read at least some of what is on the veteran’s site. Even fellow HSCT veterans that I am friends with have said the same. It is nice to have a place to vent about things without having random people questioning everything and getting off topic, but at the same time, people should be able to see what all can happen afterwards. A lot of people really struggle with recovery. Anxiety and depression are rampant and that is a serious issue and it is downplayed as that it is a rare side effect and it is probably the most common side effect out there after dry skin and a couple other minor things. Also many people have halted their disease progression but some of their old symptoms got much worse, there are a fair number of people who are on a lot of pain meds that they weren’t on prior. This is also downplayed.

      My biggest concern however right now is that in Mexico many patients are not reaching neutropenia, this has been brought up numerous times on the veteran’s group and the “expert” on there claims that doesn’t matter and their treatment will still be a success, my doctor and neuro as well as numerous other peoples’ doctors have said that you need to reach neutropenia and get your numbers below a certain number to truly wipe out the bad B and T cells. Some people’s leukocyte counts have not gotten lower than 1.3, some never got lower than 3.0, my lowest was 0.05. Most people there also had their lymphocyte get back to normal within a month, mine is still around 0.45, normal is over 1.0, that shouldn’t get back to normal at least 6-24 months after treatment. Either all of these doctors are wrong and have no idea what they are talking about, or people are being misled and are not getting the proper chemo dose there. If the proper chemo dose is given 95-98% of people should lose their hair and all will reach neutropenia, splitting chemo doses by a couple days won’t matter in that at all. Like I said on the Russia group, I really don’t care where people get treated, but the whole not reaching neutropenia thing is very concerning. Of course most people will still see results for at least a year or two just because the chemo halts progression briefly, it’s why progressive patients see some improvements with rituximab infusions every few months, but I’m kinda concerned to see the success rates out of Mexico after a couple years, I don’t think it’ll look good. And the sad thing with that is, at the beginning in Mexico everyone was losing their hair and numbers got super low, it’s only the past 6 months or so that a lot of people aren’t reaching neutropenia. Many are, but many aren’t. This topic can’t even be discussed on the regular groups for HSCT because the moderators delete the posts or ban group members who dare speak up. It’s not fair to those considering the treatment to not have all this information in front of them to make a decision.

      I will be doing a post of all the side effects from the veteran’s group in another week or two. I’m sure I’ll get a ton of hate mail for that as I typically do, god forbid I tell people things that they don’t want out there. HSCT though is the only chance at halting progression, even for SPMS or PPMS, that’s why I think so many people will do it no matter what. If I had SPMS with a higher EDSS score I’d still go for HSCT, it’s the only hope to stop progression. The two in my group with higher scores, one 6.5 the other 7.0 with SPMS both have had improvements in the past almost 6 months since being home. I think the key to success is positive attitude like Dr. F says, a supportive family and friends, and then you really have to try and push yourself to make improvements. So many people mope around and refuse to push themselves and they make very little progress, the ones that really push the therapy and rehab are the ones that make the most progress, at least that is what the veteran’s group seems to show.

      Good luck with your treatment, as we are facebook friends, I will be following your journey as well! Dr. F truly is an amazing doctor and you are in the best hands possible there. And as a plus, tongue is no longer on the menu, hahaha.

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