I had ATG last week

[Lbrown]

I'm finally out of hospital and nearing the end of my flagyl for the C diff. This morning I finally did not throw up. I'd been barfing like clockwork every morning despite not feeling sick, I think it was the flagyl.

They abruptly stopped the pred in hospital and I gained about 15 kgs of water. Am taking a diuretic now and it's finally starting to get better. What a pain.

I am going back to work Monday.

Yesterday I walked a mile in the woods. Today I am going to trail ride my horse with a couple friends, nothing strenuous. Just getting on will be a challenge.

I think I am past the worst of it and finally on the mend. I am down to 15mg prednisone and will continue to taper. I saw the dr yesterday.

I think my big mistake was going to the hospital when my fever spiked. If they hadn't have given me those abx, I probably wouldn't have gotten C diff. But I didn't really know. Oh well. I really hope I don't have to go through this again.

Deb

[Neil Cuadra]

Deb,

I'm glad things are looking up for you. Have a good ride, and be sure to thank your horse for the ATG!

[Susan L]

Hi - I am glad you are doing better. Sounds like the worse is over for you. Thanking you horse was a good idea!! Hope you have a wonderful time and take care. I have not been doing well and hope to call the doctor in the morning, take care

[SNichols]

I was released from hospital on Aug 2, my first ATG therapy. I to had what was called a mild reaction. I was neutropenic when the hospital sent me home with lots of precautions and meds. for two days.
Husband bought a thermometer and we checked often. I think the hospital did a good job of preparing me to not get sick.

I wasn't prepared for how tired I would feel. A week later I am not neutropenic any more, but still tired.

I have a concern about platelets. When I left hospital I had a level 29, high for me sense being diagnosed in June. I have had 3 platelets infusions since Aug 2 highest level is 18. Is this happening to other people?

Cancer Center where I get infusions is two hours away, which makes for a long day but that is ok.

I think I am getting better, except for platelets.Suzie

[Lbrown]

Lots of different reactions to ATG from different people.

Today I am down to 5mg prednisone, in a couple days I will be off it.
I am waiting for my prescription for tacrolimus.
I took diuretics this week for all the water retention and now am almost back to normal, have been at work this week.

I rode my horse Sat & Wed. Yes he has gotten lots of big hugs and kisses!
I took my dog to agility Thurs. I managed to run a little bit. My dog was SO happy!

My counts yesterday were:

HGB 84 Retics 9.6 WBC 2.7 Platelets 146,000

It looks like my platelets have recovered, they had not been a problem before the ATG. My WBC is the highest in years, I am wondering if it is partly due to the prednisone.

I am disappointed with my HGB and reticulocytes. But I guess it is early days. A couple of weeks ago I had a retic count of 48, which was very encouraging.

How can people have a response to ATG so long after treatment? I was told the ATG would pretty much be gone in a couple months, as your immune system clears it out.

Personally, I have no intention of ever having SCT or BMT. Another treatment I would consider is CAMPATH. I might consider ATG again, but not anytime soon. My plan / hope is to induce a remission from the transfusions so I can work through the Marshall Protocol. I'm still not convinced medicine knows what is causing these bone marrow failure diseases, and I have a philosophical problem with needing to stay on immune suppressing drugs long term. But anyway, I digress!

Well, I made it through my first week back at work and I did a few of my normal activities. I am still tired and still need that transfusion on Saturday. Hopefully that will soon change!

Deb

[Susan L]

Hi - Well it was encouraging to hear that you are getting better. Going to work and resuming your normal activities to some extent. I have not been doing well. I have sores in my mouth, been getting short of breath with mild exertion. Very frustrated. I have had a vascular scan (normal) ct/angio of the chest - waiting for results. I am happy for you that you get to ride your horse too! When I had my ATG treatment - I was also on cyclosporin for 6 months. I remember it took awhile for me to get to a normal activity. It actually sounds like you are recovering quickly. Take care. Keep in touch.

[Lbrown]

Sorry to hear you're not feeling well Susan. I hope that changes soon.

I guess I am really impatient to get better, while at the same time, almost afraid to think that I will get better. I would like to have enough energy that I actually enjoy doing my normal activities, instead of having to force myself to do them. I would also like to take over doing things around the house, so my husband doesn't have to do everything.

I am 46 and I want my life back. I guess everyone else probably feels the same way.

I'm taking it easy tonight. A couple friends are coming over to cook dinner for me. Tomorrow I will get my transfusion, and then decide if I want to go see my horse or rest.

Deb

[Susan L]

Hi - I received my results from the CT/Angio - showing some emphysema in the right upper lobe, but they say that shouldnt be causing the shortness of breath when walking. I am having an Echo and Ekg on Monday and that should show if there is something with my heart going on. I totally understand wanting your life back. I do too. I am 55, and still have alot I want to do instead of just sittig being out of breath. Good luck with the transfusion and hope you get to see your horse. Talk to you next week.

[Lbrown]

A strange thing happened at my transfusion. They did a CBC and then started the tfx. Later, they came by to say my HGB was 93. It was 84 on Thursday.

My retics are only around 9 though, which is a bit worrying. I got printouts of my results from July 2 on and I had my WBC go up to 5 during the C diff. They didn't always do a retic count. Why not?

Yesterday was my last day of prednisone. I feel terrible today, but I think it is due to that. I'm still not having normal bowel movements. I got some probiotic fermented milk and some kefir, the milk helped a lot just after I finished the flagyl for the C diff. I am drinking water, eating tiny amounts of salt and some orange juice. Otherwise I am eating and drinking ok, but I think I overdid some cookies and ice cream yesterday. If I stick to fruit, rice, salad and protein I seem to do better.

I start the tacrolimus tomorrow. I hope there's not too many side effects, especially fatigue. I also need to get back on the exjade, which also causes diarrhea.

Deb

[Lbrown]

Last Tuesday I had a return of the C diff (confirmed by tests). So back on the flagyl I went. I am currently on 2mg of tacrolimus 2x a day (will be adjusting), 500mg flagyl 3x a day (for 10 days). I feel really tired and slightly queasy all the time. I wonder if it is the C diff / flagyl or the tacrolimus? I hope it's not the tacrolimus.

My WBC and platelets are doing my fine but my HGB is still dropping. My hematologist said I am doing fine and ATG can take 2-3 months to kick in. I wish it would hurry up already. I'm tired of feeling like a wet sock.

Deb

[Laura]

I have been having issues with CDiff...using Flaggyl/Vanco. And I feel sick most days too. So maybe that is why?

For repeat Cdiffs it is normal to add oral vanco in addition to Flagyl. Or at least in my institution. After I had a repeat of Cdiff...I was on Flagyl for a month and will be on Vanco long term. Currently four times a day (for 6 weeks total) but will go down to two times a day after that.

However, I am still having issues with nausea and GI problems. And since then my Cdiff has come back negative (rechecked today along with many other viruses). They are unsure what the issue is but say I could possibly still have shedding of the virus even though it comes back negative.

[Lbrown]

She told me 20% of people need a 2nd course of flagyl. During the first course I was vomiting a lot so maybe I lost some of it. She said if it reoccurs then I will have to take vancomycin and something else that I think starts with 'a'. I will probably also have to see an infectious disease specialist. C Difficile is the bacterium Clostridium Difficile, not a virus. It sure is not fun. And how are you supposed to fight these things with a suppressed immune system? I wish I had never gone to ER after my ATG, that's for sure.

Oh well, hopefully this will be it. At least my WBC and neutrophils were close to the normal range last week (3.3 and 2.5).

Deb

[Laura]

Yes, I am aware it is not a virus. I just slipped, but thanks for the information.

Are you on any long term antibiotics?

[Lbrown]

No, no long term antibiotics, unless I guess I need yet another round for the C diff, which I hope not.

Deb

[Lbrown]

Results today:

HGB 89
Retics 15
WBC 2.2
ANC 1.4
Platelets 380k

Disappointed with the HGB which has dropped 14 points in a week. The retics have gone up >65% from 9 to 15 though, so maybe there is progress being made. My dr did say it takes 2-3 months and I am at 6 weeks. Platelets are crazy.

I wonder if having an active C diff infection can affect HGB.

Deb

[Lbrown]

I saw my dr at Sunnybrook on Friday and he said it is an excellent sign that the platelets have recovered, and that the red cells should not be far behind. Of course, "not far" could mean 6 months. I still needed a transfusion on Saturday.

I finished up round 2 of abx for the C diff on Saturday. I think the C diff is returning. I will go get tested tomorrow. I feel so much better off the flagyl, no more nausea. It will be vancomycin the next time if I still have it.

Deb

[Laura]

I don't think Cdiff can affect your HGB levels. Hopefully because your retic is higher, that means your RBC's aren't far behind. Otherwise your counts don't look bad at all. Sorry to hear you think the CDiff is returning. If you are not on long term antibiotics, what do they think caused the CDiff? Or do they think you just picked it up from someone else? With this last infection I had, I was on Flagyl for one month and the same time Vanco. But I am still taking the Vanco at the full dose (four times a day) for two more weeks. Then hopefully will go down to twice a day for as long as I am on the antibiotics.

Laura

[Lbrown]

I caught C diff from the hospital, during a round of broad-spectrum antibiotics. I figured the diarrhea would go away when I stopped the abx, but it didn't and I just got sicker and sicker. Finally they tested for C diff when I showed up at the ER sick and dehydrated.

I never had C diff before, I can only guess I caught it at the hospital. According to wikipedia, 2-5% of the population already have C diff, but it is kept in check until everything else is wiped out by broad-spectrum abx. So I guess there's a possibility I already had it, but I don't think so. I think I caught it while in hospital.

I never went for the test today, I might go tomorrow. I feel like it could be returning. I'm not sure. I'm feeling way better off the flagyl, but still tired.

Deb

[Lbrown]

Counts yesterday: HGB 93, retics 8.8, WBC 2.6, Neuts 1.8, platelets 222

My c diff is back for a 3rd time. I am waiting for my new abx to arrive at the drugstore - they don't normally have vancomycin in stock. I will be on 2 but I forget the 2nd one. The vanco is supposed to be in at noon. Meanwhile, I've been up half the night with diarrhea. I hope this 3rd round finally kicks it.

I'm also now on 3mg tacrolimus 2x a day. I don't notice any effects from the tacrolimus so far. Hopefully it stays that way, so that when I'm over the c diff I won't feel too bad.

Deb

[Laura]

Sorry to hear the CDiff is back. Hopefully the Vanco can kick it's ugly butt. I am taking 125 four times a day. The pharmacy does not normally carry it here either. It's an expensive thing too!!

Counts looks great.

Laura

[Lbrown]

2 weeks of vancomycin (125mg x 4x a day) cost $485. Even with insurance I am paying > $100 for it, that added to everything else.

Well, I started to feel better after the first pill. I am also taking rifampicin 2x a day. The side effects are mild and nothing like the flagyl. I was getting my appetite back on the weekend, and did some cooking. Now if I could just get some red cells and some energy! I have a transfusion booked for Saturday.

Deb

[Lbrown]

Counts today:

HGB 77, Retics 16.3, WBC 1.1, ANC 0.6, platelets 228, creat 72

My HGB dropped 16 points since last Thurs.

Deb

[Laura]

Are you going to get a transfusion? Sorry about the drop!

Laura

[Lbrown]

Yes, I had a transfusion. Also they're still playing around with the tacrolimus levels. I'm now up to 5mg 2x a day, hopefully I won't have to increase it too much more. OTOH, I don't have any side effects other than a sharp headache when I first increase the dose. This lasts for a few days. Sometimes I take tylenol, sometimes it isn't that bad.

Deb

[Laura]

Wow that is pretty high! But hopefully it will keep things in check. I guess I either forgot or didn't know you were using Prograf. I liked that much more than CSA personally. How are things going now?

Laura