Hey Everyone! I am new to this forum. I just want to ask for advice on what to expect or do when we get home? My husband just had his unrelated allogeneic SCT last May 16th. He is 41 years old. We are on day +15 now. He was diagnosed with ALL PH+ last 5/23/2011. It has been a year already. The doctor said his count is coming up which is good. Hopefully we can go home soon. I am worried about his skin rash. They are on his palms and on his legs. I think it is getting worse esp on his palms. I know one of the signs of GVHD is skin rash. I am afraid about it because we are on day +15 and he already has symptoms for GVHD. He doesn't feel good lately and he is depress. I am worried when we get home. At least in the hospital, we have nurses that can give him anything if he needs something. He also has fever on and off.
Sometimes I can't help not to be scared just thinking about what might happen. He is my world and I don't want anything bad happen to him. I want him to always stay positive. I know he tries to stay positive but sometimes he can't help it esp when he doesn't feel good.
God bless everyone! Thank you in advance!
Hi Aiga!. My 21 yr old son had his transplant 7 mos ago...he also had some rash pretty early on..but it actually got better!
Attitude is everything so pull in the troops...if he is social bring on the friends..or if its music play it always.! Take it day by daya...BJ was very fatigued when he first got home and his appetite was our biggest battle...Keep your faith and remember to let others help and do for you too! Keep writing in here...you will get invaluable advise!
After my sct I couldn't wait to get out of the hospital! Everything went well and I was able to go home on day +13. If he still has a fever they probably won't let him leave until they are sure he is ready and that's under control. I was extremely fatigued and really just wanted to rest. For the first couple of weeks I slept a lot and went back and forth to the clinic for follow ups. I also struggled with having zero appetite and did not each much at all nothing tasted good.
I know it can be a scary time for both of you being away from immediate treatment but you will see the doctors very often at first which should help you feel a little safer. It just takes some time to feel better and as days go by without incident it gets easier. Iif you have someone who can give you a break when you first come home that will help too because you will probably not want to leave him alone and that can be very difficult on you.
I was a grumpy patient when I got home sometimes too which is not unusual. When you weak, tired and just feel bad all the time it can cause you to be less sensitive and maybe even a downrite jerk to the ones you love the most. If that happens know he is not himself and doesn't mean to be "mean". I did that some and didn't even remember it when I felt better.
Being a caregiver is a tough job but you sound like your up to the challenge! Hang in there and Iif will get easier.
May God bless you both.
I had my allo some 10 months ago. The first month is is particularly rough. I also doubt that he will be released if he has fever, that is one of the indicators and warning signs that is tracked closely.
On the skin rash, some is actually good (at least that is what my doctors told me) as it meant the strategy to control my MCL through effectively a new immune system was working. I had some mainly on my arms and legs and it settled down after a few months - they gave me some cream to deal with the itching and irritation.
I was much happier at home than at the hospital, no matter how nice and caring the staff were.
Everyone gets a little bit of a rash, I think, whether it's GVH or just irritation from something in the environment like. say detergent on the sheets. It's not much to worry about at this point. In fact, if it is GVH it's a sign that his new immune system is going online and he's actually getting better.
I don't want to downplay the significance of GVH but it's not necessarily a bad thing, It means the immune system can eat up any residual cancer.
I imagine all caregivers are scared. It's a tremendous responsibility to have another person so dependent on you. But every other caregiver I know of has shined in their job and so will you.
Sometimes I can't help not to be scared just thinking about what might happen. He is my world and I don't want anything bad happen to him. I want him to always stay positive. I know he tries to stay positive but sometimes he can't help it esp when he doesn't feel good.
Don't worry so much about him being positive all the time. It can't be done. Around here we've kind of figured that determination is what's important. I might have a very negative attitude and use that to make me even madder and fight harder.
Please keep us informed. Things will go just fine.
There are different grades of GVH. The lower and medium levels are ok. As Tex said, it's a sign that his body is fighting any residual disease. The key is to have it treated early by his med team.
When he gets releases, keep an eye on him and note anything that's out of the ordinary. Your center will probably provide you with a 24-hour number that you can call. His body will be going through changes as he adjusts to his new system. If anything makes you uncomforable, check it out with the med team.
He'll be fatigued most of the time. Encourage him to exercise as it will help with the overall healing. If he has trouble eating, small portions are ok. He can eat as many meals as he wants or is able to. Brain exercises are good as well - crosswords, number puzzles, etc. The key is to do them - not to complete them or get them right. You just want him to exercise his brain.
You will probably need to help with a number of things depending on his weaknesses. Watch for small improvements and gradually encourage him to do things on his own.
Hey everyone! Thank you so much for your reply. I really appreciate it. We are already at home since June 7th. He is still very weak. The rashes I mentioned in the first post wasn't GVHD and they were already gone. But he has new rashes now and it is GVHD He needs to take 60mg of prednisone... I am really worried about this GVHD thing... Can you suggest anything that might help on the rashes? Doctor gave him cream to put on the affected areas. By the way, he complains his lower back. It hurts. I really need to insist to his doctor that it is not the way he's been sleeping coz he always try to get up and walk a little... We are still far from 100days and it already shows those GVHD...
God bless us all! Thank you again!
The Prednisone ought to do a pretty good job of clearing up the rash. As for mine, I found that a cream high in lanolin did a great job of relieving my pain. But a lot of folks prefer a steroid cream. Just stay with the doc on it.
I can't think of what could be causing his back pain, unless it's just the fact he's sitting and lying down a lot more than he probably ever has. Sometimes we get in bad positions. If he'd been on Prednisone a good, long while, I might think it was osteoporosis but that couldn't be it...or at least that couldn't be the cause. Probably the best thing is to ask for an x-ray.
Do be aware that 60mg of Prednisone can have a strong affect on his personality and it can make a lot of people very touchy and easily enraged. So, if he turns into a jerk, well, it's the meds. Probably a good idea for you to do the driving as 'roid rage can lead to road rage. But just keep an eye on things to start. I guess not everyone turns with the Prednisone. As for me, I'm just lucky my wife didn't leave me in Seattle.
It actually sounds as if he's doing very well. Please keep us informed.
Hey Tex! Thank you so much for your quick reply! I really appreciate it. We just got home from Doc's visit early this morning. The doctor said everything is fine... Eventhough the rashes got worse but Doc said that it means, transplant is working. They did not increase the prednisone. Our cream is called Triamcinolone Acitonide Cream USP, 0.5%. I started applying the cream since Monday night.
Thank you for mentioning about the effect of prednisone. Because lately, he is grumpy. I know he doesn't feel too good and I understand but just lately he easily gets mad. About his back pain, I mentioned it to the Doc and looked at it. It is a tight muscle so Doc encouraged him to lay face down and elevate his upper body to stretch his muscles. I will let him do that often.
By the way, I am worried about his weight. Last Monday, he weighed 150lbs but this morning it went down to 147. He has been eating pretty good compare when we were at the hospital. He always have breakfast, lunch, snacks and good amount of dinner. I'm wondering why he lost weight.
Thank you once again! God bless us all!
Some weight loss is normal. I lost a fair amount the first month or so, as part of the GvHD, even mild, is in the gut and our digestion tends to be less efficient. My doctors, while concerned, were ok with this for a while as long as I was eating and drinking reasonable quantities. After a while they gave me Entecort to help but given that he is on Prednisone (both are steroids, Entecort only works on the digestive system, unlike the broader effects of Prednisone), do not see need to question approach. And try not to get too fussed over day to day fluctuations in body weight - look at the weekly trend line and flag to your doctors.
Hell, three pounds fluctuation is my daily routine. Given everything that can go on with our bodies in the hospital, I don't think it would be surprising if he did so.
If he's on Prednisone, there could have been some water retention and that could account for a few pounds gained or lost. I wouldn't worry but I would keep an eye on it and be prepared to get the docs moving on it if it worsens.
I seems like no matter how much you drink, they want you to drink more. Ask how much he should be drinking. I'll bet it's higher than what he's getting.
As Tex said, many of us get fevers that have no explanation. We just chalk it up to another one of those weird recovery issues. However, do not ignore them. Always make sure that they're checked. If the doc wants him to go to the ER when his temp hits a certain number, do it.
Thank you Tex and Lymphomajourney! My husband has running high fever since friday morning... Just every morning. They gave him antibiotics and fluids too. Blood culture didn't show any infection, chest xray is clear. Counts were good. They could not figure out what causes the fever again. Fever was the reason why we stayed longer at the hospital and at that time, they weren't able to find what caused it. And now they are still looking for the cause again. Do you have any idea what causes fever with the transplant patient? Or anything that might be the cause? Also, he has been dehydrated too.. I know fever causes dehydration but before he started getting fever again, he is always dehydrated eventhough he has been drinking a lot of fluids and he has been eating good too. That is why everytime we have clinic visit, I always ask if he could get fluids. Have y'all experienced what my husband experienced? I am totally lost right now. No causes of fever and dehydration..
by the way, Happy Father's Day to all Fathers out there! God bless us all!
Hard for me to say what the cause may be when your medical team seems to be doing all the necessary tests etc to try to determine what it may be and am treating him with antibiotics and fluids. He is at around the month mark so hopefully things will settle down soon. So the only suggestion I have is to keep him closely monitored, hydrated etc (and good sign that he is drinking a lot and eating well) and hopefully these will work themselves out. Tex may have some good suggestions as well.
All the best to both of you.
When you say he's drinking a lot of water, how much is it a day? They wanted me doing three liters/day. I never quite made that but I did pretty well. Dehydration can cause fevers, too, I think.
We still can't comment too much as we don't know the range of the fevers. That would be helpful information.
Basically any number of things can cause fevers. But some things cause fevers in the 100-102 range and others can go much higher. During my first induction I ran fevers as high as 106. They had an ID doc watching me like a hawk and they never figured out what was the cause. I think it was a long-term reaction to Leukine, a cell growth stimulator, although I can't figure out how it continued for days after I stopped receiving the injections. But that's what I think.
Still, the bottom line is a lot of us wind up with fevers that never do get explained. It's just another weird part of this journey.
I do agree with Andrew that it seems like they're making all of the right calls on checking into it. I think you'd do well to get more fluids into the man and just keep an eye on him. Try to not worry about too many things or you will be insane by the end of the first year. Watch him and see what happens. If it gets bad, get him to the ER.
Keep us updated, please.
Thank you y'all for your reply! He hasn't had fever since Monday. Thank God! But I still keep checking his temp every now and then. His rashes seems to get worse so they increased the prednisone to 60mg twice a day. He started taking it twice a day last Tuesday. Hope and pray it will start to fade away. His fever went as high to 103. We used ear thermometer. It was always high compared to mouth thermometer. I have a new question but I will post it to a new thread. Hope you can still comment about it.
Thank you once again! God bless us all!
Okay, a nurse's aid and I played around with the ear thermometers one day and we got readings from 98.x to over 102. Those things have to be used precisely, For awhile, I wouldn't even let them use the ear things on me. That might explain the discrepancy between the oral thermometer and the one for the ear.
Then again, you're probably using it right. Just be sure. They have to fit flat into the ear canal to work right.
I do not envy you having him on 120 mg of the Pred per day. That is probably going to make him absolutely nuts. Just remember it's the meds talking and not him. That stuff can make you crazy. How much does he weigh?
Hang in there.
Hey everyone! I am worried about my husband's current condition. He has been super fatigue and weak for a few weeks now. It is just different now because the first month from transplant, he felt fine and he even walked on the treadmill.
We are on day +74. First week of July, blood work showed he is CMV positive so he started taking valcyte. Everything went fine and he had energy but on July 7th, he felt bad and he had a syncope episode at home. We called 911 and went to ER. On this day, he was really shaking badly and feeling discomfort. He was admitted from July 7-12. They did a lot of tests and found out nothing. At first they thought that he had a cyclosporine toxicity but brain MRI didn't show anything. So they ruled out that it was because of prednisone. He had been taking 120mg prednisone for 3weeks prior to that day. They said the discomfort and shakiness was caused by the prednisone. During the hospital stay, they gave him gancyclovir for his CMV. When we got home, I noticed he was super weak and fatigue and still stays that way until now. All his blood work went down. Docs said it is because of valcyte and CMV. He also taking cellcept for his skin rashes.
Then on July 25th, we had our clinic visit. Still his counts are down. WBC - 1.7, hematocrit - 26, palelets - 37. We told our docs that he is still weak and fatigue and he is still shaking. So they decided to give him fluids and potassium. While we were waiting, he was so pale and I called help. That was when he passed out for 2mins. I was really scared. We were just sitting down and he was resting but he passed out. He was admitted on that day. They did a lot of tests again but still they could not find anything that causing him to passed out. All the tests were negative. He had a blood transfusion in our hospital stay. His count still down up to now. WBC-1.3, hematocrit - 28.5, platelets - 33. His CMV level went from 670 to 360 which is good.
Up to now, he is still super weak and fatigue. Just by moving around the house or going to the bathroom wear him out. I forgot to mention his heart rate is really high. They also checked his heart and it is fine. They said his heart rhythm is normal evenhough his rate is above normal.
I am really worried esp when we have clinic visits. When we got out from the hospital the first time after his transplant, he wasn't this weak. He was moving around, we walked around the house, and he used treadmill. I know weak and fatigue is normal after SCT but I think this is not normal. Everything was checked and results were all negative. Does anyone can explain what is wrong? Why is he super weak and fatigued? Why his heart rate so why when he moves around? What causes his count to drop so low? They always say that it is valcyte and other drugs. He was admitted twice this month and it is really frustrating why all of those happened. They could not find an answer. Please help me understand. He haven't gain much weight either eventhough his appetite is back. I want him to move around to get his energy back but I am afraid he might pass out. sigh. Also, how bad CMV can affect on his body? I was thinking this all started when he was CMV positive and when he was started taking valcyte...
Thank you so much! God bless everyone!
Sorry to hear that your husband going through a rough time. I did have a few bumps in the road later on in the transplant recovery period so some of this is to be expected, but it sounds as if he (and you) are going through a particularly rough time. I cannot second guess your doctors but it might be helpful at the next visit to ask them for an overall assessment of how they think he is doing, the combined effects of the drugs etc (like Tex, I wonder a bit about the high Prednisone does but expect the medical team has its reasons).
So unfortunately, nothing particular to suggest but just wanted to share my thoughts are with the both of you. Tex I expect will have something more helpful.
Valcyte can, indeed, hammer a patient's counts. It really messed up my PLT and WBC but it was better than letting the CMV run amok.
For some reason I keep wondering how much water he's getting into him. I know hydration can affect blood pressure but it seems my heart rate is lower when I'm well watered. If he's not getting much water, that could probably account for any number of ills.
How is his BP anyway? Also, is he still on Prednisone and, if so, how much?
CMV can kill him and that's why low counts are worth it, if necessary. However, if he's just showing copies, that doesn't mean that he's got an active infection. CMV is usually the culprit behind things like CMV pneumonia and CMV conjunctivitis (or is it retinitis? It's been awhile). One can get active CMV in their organs. But that's what the Valcyte is for; the idea is to keep those diseases away from him and never allowing them to set root.
You know, there are a lot of possibilities. Coming back the the water, it can affect so much. We've got to have a lot, they wanted me to drink three liters a day (and still want me to...they're kind of fanatic about it at the Hutch).
Still, if the docs can't find anything, I doubt we're going to be able to come up with any ideas they're missing. Maybe, who knows? Probably not, though.
Fatigues is also a major issue for a long time after a transplant. I have good days and bad days and I'm eight years out. It's impossible to predict how any one person will be affected by it.
I'm sorry to hear that he's going through this. I'm not sure what to offer that the doctors haven't checked. Prednisone can lead to fatigue when we get off it. Passing out sounds like it's more that that though. Hopefully they're looking at all of his meds and making sure it's not a chemical imbalance. Tex's comment about hydration is true - make sure he's drinking enough. It's also critical that he stays on schedule with his meds. Make sure that the docs are aware of the times that he takes his meds each day. There may be a combination at a certain time a day that causes a problem.
Thank you Andrew, Tex and Kelly! We had our clinic visit this morning. It went fine. I am glad his count is coming up. WBC-2.2, hematocrit-33.2, and platelets-44. He was really tired when he woke up and I was afraid
He used to have a normal BP but after the transplant, BP has been high and for last 3 weeks his heart rate is really high. He is really good in hydrating himself. He drinks a lot of fluids everyday. He was 100mg of prednisone until July 24th. Started taking 80mg on July 25th. His rash is getting better and hopefully they will lower it down on our next clinic visit.
He had his CMV count taken today, so we will know the count on Wednesday. His last count was 360, hope and pray it will continue to drop. Our docs decided to give him something to help the heart rate and high BP. They prescribed Metoprolol 12.5mg twice a day. He started taking it this morning when we got home. He just took the 2nd pill after dinner. Then he walked around the house while talking to his sister on the phone. He felt tired but not as tired as yesterday. I think the new pill helps. He has a heart rate monitor watch and we've already seen the difference from yesterday and today after taking Metoprolol. Hopefully it will continue to do his job.
We are on day +75 today. I will keep you updated and thank you so much for your responses!
God bless us everyone! Take care!
Hey Everyone! We had our clinic visit yesterday and it went well... The CMV is now negative... YEY! Thank God! Our docs will wait for another negative result before decreasing the dosage... My husband is doing ok. The metoprolol helps a lot eventhough sometimes his BP is still high but at least his heart rate is not as elevated as before. He still weak and fatigue which is normal.
I have read about 60day slump here and I looked at my husbands count, at day +63, his count went down from 4 to 2.7 in just 2days and his WBC still very low until now, 1.5 from yesterday's visit. But he was taking valcyte though so I was thinking it was because of the valcyte. When can we see an improvement on his WBC? We are on day +78 today. His WBC is fluctuating. Our next appointment is on Monday, Aug. 6th. Hope and pray that we will have a good visit on that day!
Thank you everyone! God bless us all! Take care!
Glad the CMV went off the map. Are they intending to keep him on Valcyte? It might not be a bad idea until he's off his immune suppressants.
Valcyte can affect WBC. Is he on Bactrim, too? That can really hit the ol' WBC counts. Getting both of those out of him might really help his counts head upwards. But be patient, they're doing some pretty important jobs at the moment and he seems to be doing okay.
At any rate, I wouldn't worry. A little flux is present in almost all blood samples. They could draw two tubes for a CBC without removing the needle and they'd probably show some differences.
Hi Tex! Thank you for your response! I think he is still gonna take valcyte until his off his immune supressants. He is on Bactrim too. He started taking bactrim on June 23rd (saturday). He only takes the bactrim twice a day on Saturdays and Sundays only. Thank you so much for this info.
I just can't help it to be a worrywart... We are just taking one day at a time. Thank you so much!
Have a wonderful weekend everyone! God bless us all! Take care!
I was on Bactrim daily. I think I only took it once a day but can't really remember now. My counts were so suppressed by it that they took me off of it and put me on penicillin and dapsone (an anti-parasitic developed for leprosy). That gave my WBC whatever it needed to climb back up. But they were really concerned about my WBC at the time. They were pretty low (can't remember the numbers).
I was part of a study that demonstrated that staying on Valcyte prophylactically did help keep the CMV from reactivating. So I hope they keep him on it. But that could very well affect his counts, so be ready for that.
Hope all else is well.
Hey Everyone! Hey Tex! My husband is doing OK so far. We had a call from our nurse today and they decreased the Valcyte to 1pill twice a day. CMV still negative. Thank God! He will be on Valcyte until he is off on immuno suppressant. He is down to 60mg of prednisone too. Yey! Hope and pray that rashes will heal. He still weak and fatigue. Having a little uneasiness after taking his tons of pills in the morning. Our clinic visit went down to once a week which is every Monday morning. Scary though because we don't know his counts for a week but hopefully he will be fine. His WBC went up from 1.5 to 1.7. His other counts look good too. We are on day +84 today.
Thank you Tex for always replying my post! And Thank you also to everyone who replied my posts. We are just watching olympics everyday...
Have a great week to all of us! God bless us all! Take care and be safe always!
Good to see all of the smiley faces. I'm glad he's doing better.
It is a bit scary to be "free" from all of the doctors visits. We begin to depend on the doc for support and reassurance. But the docs are actually giving us a long time reassurance when they don't need to see us quite so often. They take away our safety blanket and we've got to fend for ourselves.
But that's what we took on the fight for anyway. We want to be independent of our docs. That's the whole point. It's just a little shaky when it first happens.
You'll both do fine.
Glad to hear things are going "OK" From what i read, it sounds like your husband is pretty much par for the course. My son was 20 when transplanted and when we left the transplant center he told me he was not prepared for the fatigue of transplant. He spent alot of time on the couch and at one point he said it took every bit of energy to reach down off the couch and pick up a book.
My son was not on valcyte (allergic reaction to it) so i had to give him gancyclovir iv (IV form of valcyte) for about 6 mos. It suppressed his bonemarrow and i had to give him GCSF a couple of times a week to maintain a white count. Once we stopped the gancyclovir his counts recovered nicely. Between decreasing the prednisone dose and the valcyte, dont be too shocked if the counts drop a tad or continue to be low.
Slow and steady, keep going.
Hey everyone! Thank you for all your reply! We had our Doc's visit yesterday. It went fine. His count went up a little bit. He is OK but as usual tired and fatigue. We survived the first once a week schedule. We are on day +90... Thank God! Hope and pray the recovery will continue to get better day by day...
I have a question to all of you, did you experience discomfort esp after eating? My husband is feeling the discomfort after eating. He also feels bloated and has heart burn. He is now taking protonix twice a day. We don't know maybe the foods he eats? Can you give me suggestions on what to do to help his discomfort? He takes ativan to help it. It usually happens at dinner time.
Thank you everyone! God bless us all! Take care!
Nate had a good bit of heartburn for quite some time after his transplant; probably a combo of meds and his tummy adjusting. He took prilosec every day and it seemed to help. He also dealt with a lot of nausea. His was pretty mild GVHD. Mention it to the docs though; there might be something they can do to help out. Nate would drink a mixture of corn oil and beclomethasone 4x a day to coat his stomach with the steroid and help handle the GVH of the gut. The cells in the GI are pretty sensitive I guess. Nate also took a combo of both ativan and zofran. Ativan to deal with nausea that he currently had, and zofran to attempt to prevent.
My main GvHD and other post-transplant reactions revolved around my stomach and gut. So yes, feeling bloated, lots of gas and heartburn at times. At various stages I had Entocort (a steroid for the stomach) which helped for a while, and then Prednisone when I hit a bump in the road (now phasing out). In terms of foods, experiment what works best for him. While for the first month or so I could not eat much, having some salty broth helped the transition towards normal eating.
I've been following your posts for a while. I'm at day 34 of my allo, unrelated donor transplant. Just last week I started having stomach aches after eating. I didn't think I ate anything in particular to cause it. Until then my stomach upsets (which at worst are more like cramps) came about only after taking cyclosporine and cellcept.
I am also taking Protonix. Protonix is specifically for heartburn/acid reflux. It's definitely stronger than Prilosec for example. It also doesn't work right away. Your husband's bloating also sounds like gas. If it is, you might find out if he can take something or an OTC product specifically for gas. My BMT program has a nutrition guide suggesting easy to digest foods as a way to eliminate discomfort after eating. I don't feel I have had heartburn or acid reflux symptoms. I have a separate esophagus problem that the docs believe is triggered by excess acid. So I'm still trying to find out what's really causing my various stomach upsets and what will really work.
That sounds like it might be GVH of the gut. If the doc hasn't put a camera down his throat, you might want to ask them about that.
Gut GVH takes on a lot of forms. The bloating is the one symptom I had in common with the list you gave. I couldn't eat more than about three bites a meal for a few days before they got me on meds for it. Although, if he's already on 60 mg of Prednisone a day, that should be taking care of those symptoms.
It also sounds a bit like a hiatal hernia. I'd really want the docs to look at my belly and see if everything's okay in there.
Glad he continues to improve otherwise. Keep us posted.
Hey Everyone! Thanks for your reply! Today is my husband's 100th day! We thank God for reaching this day...
We had our doc's visit last Monday and it went fine. I think taking protonix twice a day helped him with heart burn and feeling bloated. But he still feels the stomach discomfort. He thinks that he is just full of crap. I asked our doctor about it and she didn't think it is GvH. His appetite is still really good. He hasn't have problem with his appetite since we got out from transplant. We thank God for that. His weight is going up now - 150.6lbs. He used to weigh around 170lbs pre-transplant, more pounds to go.
He will have his bone marrow biopsy on Aug. 28th. I am anxious with the result. I am praying that it will be fine. I think result will take weeks so we will wait. We are still taking it slow.. Spend most of the time on the bed watching tv and movies, just being a lazy bum.
Thank you so much everyone! God bless us all and have a great weekend!
Sounds like you have every reason to anticipate a great BMB result. He seems to be doing pretty well and if the doc was good on Day 100, then that's all I'd need or want at this point.
Congratulations on the first big milestone. I hope ya'll had a nice mini-celebration. If he felt up to it, that's even better.
Thank you everyone! We had our doc's visit last Monday and it went well. My husband had BMB the next day (Tuesday). First time he had sedation. Said that he should have done it before. He didn't feel a thing while they did it, just had a little pain on the area after a few hours. We might get the result on our next appointment on Wednesday next week because Monday is a holiday. Hoping and praying for a good one. He is feeling fine. Thank God. Still having the stomach discomfort but not as bad. He said that his stomach is tight. He poops good though. He is on 50mg of prednisone now. The rash is getting better. I just keep on using the steroid cream.
By the way, it is OK to drink coffee and soda? He started drinking coffee today and had coke the last couple of days. I just wanna make sure that it is fine..
Have a blessed weekend to all of us! God bless us all!
If his stomach can handle it, there's nothing I've ever heard of wrong with coffee and soda. They used to bring them to me all the time at UW, my guess is that my doc's didn't mind. At the same time, I don't think caffeine always works and plays well with our bellies. But he'll recognize that if it's an issue.
I can't promise anything but in virtually any case, you would have heard by Wednesday or Thursday is there was a relapse. Do, that's good. The rest will just be numbers, important numbers but numbers nonetheless.
They would have told you if he couldn't have coffee and soda. I had no desire for either while I went through chemo and the transplant. I still have no desire for soft drinks but once coffee sounded good, I was right back to drinking it. I didn't start until 5-6 months after my transplant though.
Hi Everyone! Wow, it's been 2 months since my last post here. Sorry about that. Hope y'all are doing fine. Been busy taking care of my husband and doing some things around the house. My husband is doing fine. They started tapering down his pills. But just a couple of weeks ago, he started having some stomach issue then threw up twice. Our docs said he has a stomach GvH so they increased the prednisone to 60mg. He was in 20mg for a few weeks. It did help and he didn't have same problem as before. He is a little constipated lately though but stomach seems to get better.
We just had our clinic visit today. His counts are fine but I am a little concerned about his WBC. I always keep track his blood counts every visit. Our doc said he is doing fine and his counts were good so we are happy. I didn't see the lab result until we were done talking to our doctor. Her nurse just handed me the result in the waiting area. When I looked at the result, I was concerned about his WBC. It went up to 7.9 today and just last Wednesday it was 2.9. I wasn't able to ask my concern because we were already done. We have another appointment on Wednesday though. I am just worried about it because in 4days it went up. His WBC did not jump like that before. Then yesterday he felt dizzy and today also. His result looks normal to me but it is just weird why his WBC is up today though it is in normal range. I am really worried about relapse. What he did different since Wednesday is that, he started taking Sprycell again in Nov 2nd, 20mg daily and posaconazole oral suspension (noxafil) - 5ml 3x/day on Nov 1st. Our doc did not mention about it his WBC today, she just said everything is fine. I am just worried about it why it jumped like that and normally his WBC is around 2 or 3 only since the first month after transplant. I will not know his count until Wednesday and I am freaking worried right now. Does anyone experience like this before?
Thank you sooo much! God bless us all!
There are so many reasons that his WBC could be up it would be hard to assign any concern to one jump. He could have an infection, his marrow could have finally kicked into full gear and begun producing them in abundance or any number of other possibilities.
I know it's easy to stay on pins and needles when we're just out of treatment but it passes in time. Look for continued increases before you get concerned. The next CBC they could be down or stable. I'd bet it's down a bit.
Regarding the dizziness, is he getting enough water? He should be drinking about three liters a day, which is virtually impossible unless you're working in the hot sun. Still, if he's let himself get dehydrated, he could be dizzy quite often. Make sure he's drinking water and a lot of non-caffeinated drinks.
Try not to worry until there's some established history to indicate there's something to worry about. You're just learning what those things are but you'll have them figured out in a short while. Then you'll sleep a lot better.
Actually, things look like they're going pretty well. So that's good. Keep us posted.
Thank you so much Tex! I just can't help not to worry because it jumped a lot. I will wait until tomorrow. The doc wasn't concern about it and she didn't mention it either. He feels better now after they increased the prednisone to help his stomach. He is not as tired as before also. His preliminary neutrophils was 73% which is high. I computed his ANC and it was around 500. We will see his blood work tomorrow. About being hydrated, I always make sure he drinks a lot of water. I think I will let him drink more than I give him. He also dinks gatorade everyday. I will keep y'all posted.
Take care everyone! God bless us all!
About the only thing that can really relieve the worry is time. Each time we get a successful checkup under our belt, we become a little more confident the next checkup will be as good or better. Building up that history doesn't happen overnight. Other than that, it really helped me to just force myself to think of something else. Go see a funny movie. That always helps me, too.
I wouldn't worry about volume percentages, focus on the absolute counts. Right now he needs neutrophils a lot in order to get past neutropenia. I believe those are usually the leading form of WBC in recovery. They have been for me every time. But my percentages have never all been within range. Actual counts is what the docs will look at first and foremost. So, at an ANC of 500, he's not neutropenic and things should start moving along fairly well from here.
Gatorade is great as it also replaces electrolytes and other goodies we need.
Hey Everyone! Our clinic visit yesterday went well. His count went from 7.9 to 9.0 and his preliminary neutrophil is 85%. I asked her about it why it jumped like that and she just said because of prednisone... Does prednisone cause anything like that? She did not explain it well. But she said that everything looks good. His counts are going up except for the platelets from 114 (10/31) to 80 (11/5) to 66 (11/7). I asked her about it also and she said it is because of the GvH. Does GvH cause for the platelets to go down?
Anyways, my husband feels better now and he is back to work virtually since yesterday. I am grateful that his manager and the company is flexible about it. So hopefully this will help on his recovery so he can focus on other things.
I hope everyone is doing great! Have a great weekend! God bless us all!
I can't think I've ever heard GVH can cause a drop in PLT. But who knows? During these first few months, it seems anything can have an impact on anything.
I would think that the rise in ANC and the drop in PLT is just the type of fluctuation that can occur during the days after transplant. It can take a few years before our blood counts level off. I now have a norm of PLT of around 100. For awhile they were hanging strong at 160, then 130, then dropped into the 70s for awhile. It took over five years for them to finally stabilize. This is unusual but it does illustrate what I'm talking about.
Right now I'd try to set the focus on the fact he's doing well Keep an eye on other things but trust what you see in him daily and put the tests and records in the back of your mind. Keep it there but move it back a little.
Hey Everyone! Hope y'all had a wonderful Thanksgiving! Nothing much to say. My husband is doing good, Praise God! Had a clinic visit today and counts are looking good. Christmas is in the air and this is my most favorite time of the year.
Have a great week! God bless us all!