Watchful Waiting

My current count as of last week was 23K in agreement with my hemo I am currently Watchful Waiting .I have been in remission for 9 years and have just come out of it...my count was 16K at its lowest 3 weeks ago .I am hoping it will reboot itself although I will treat if I need to, he has suggested dapsone or the 4 day dex....

My question is how do you keep sane whilst Watchful Waiting !!I keep checking my legs as when I was 16 k I had lots of bruising and petechiae. I currently have one bruise on my arm and a couple of petechiae. I have no wet purpura or active bleeding!!I get a CBC next week and see the hemo again.

Thanks in advance

My trick was to pretend that my count stayed the same until I had it checked again the next time. It was a mind game, but it worked. I made a point to only check my body in the mornings after my shower. Most of the time, I was too busy to think about it much anyway....

It was a little stressful for me (as the mom) initially. My daughter has a decent amount fo small to mod bruises and some petechiae. I honestly do not think that apsect of it bothers her that much. As time has gone on without other problems it has gotten somewhat easier and we don't think about it on a day to day basis. But I still get stressed when she has her blood work done, even though rationally her counts are low but stable. I hope that as time goes on if you don't have problems it will be less stressful for you.

thanks Sandi and Terri C I appreciate the advice....and I will try and not let it freak me out too much because the hemo gave me the choice and I took it as I really want to see if my body will just sort it self out as it did in the past...I am not sure if it gets easier or harder with each episode!!
I do feel like the goal posts have changed in that in 1999 and 2002 it was all about getting normal counts where it now seems to be much more about getting safe counts...

Thank you for the advice and suggestions .

Sandi I like your style...you as good as your last count he he and Teri I hope your daughter is doing well

You hit it. Things have changed a lot since back then. I was diagnosed in 1998 and you had to have normal counts. Doctors and patients were not happy with less. I'll admit it, I was the same way. After being on Prednisone a few times though I began to change my thinking personally and wanted to avoid treatment, so I would sit on counts in the 20's for months at a time. After doing that and realizing that I was fine, I stopped being afraid. I even stopped fearing single digits because I knew that if that happened, I'd just do the darn Prednisone and they would go up. It's just a matter of accepting what is and letting it go.

Thats so true Sandi and I am keen to avoid treatment unless I really really have to,,,,it's ironic though my new hemo is very much based on symptoms not counts hence my current watch and wait ,although he says if it goes to 5 I must treat and now it's me that is obsessing about the fact they are only 23k which I know for some people would be a good count and certainly is compared to the initial 16K!!!,

I am a pediatric nurse - throughout my career I have treated ITP, mostly acute (post viral). Counts under 30 were always treated, low counts (like the 7-8 where my daughter seems to be) were emergencies. Since I have not done acute care in several years when I first heard the low counts it was scary and I was expecting immediate intervention. The hematologists have said it has only been the last 7-10 years they are not treating based on numbers. I was a little worried about the idea at first, but the more I am reading and researching I am convinced that this is the best approach for us based on our individual situation and circumstances. If her symptoms change then options are available. The doctors said they have one 18 yo who has had a count of 2 for about a year but other than really heavy periods which they are treating with birth control patches she is not having symptoms which are altering her lifestyle so she is also watchful waiting. Personally I worry about the side effects of all the medication, both immediate or over time. If it is needed for symptoms then it is necessary but personally I am not sure I would want to risk it to treat a number.

Terri:

It's a tough decision and like I keep saying, patients react to what they are told by their doctors. If a doctor still believes that 5k is a medical emergency and treats it as such, the patient will believe that also. If the doctor talks to the patient like they spoke to you, the patient sees it differently. It's true, they don't treat the numbers as much as they used to and having gone through the medications for many years, I can tell you that they do take a toll. My body was wrecked by the meds and everything just spiraled from there. 2014 is a good time to be diagnosed with ITP if you're going to get it....better than 10 or 15 years ago!

I went back to work yesterday and I have to say that whilst I am tired it goes take my mind off my ITP !! I. Get my count done on Thursday and then the hemo on Friday so fingers crossed that it has not dropped further.I will let you know how. I go and appreciate the forum and support.

Katie

Platelets 65k yesterday,thrilled !

I am happy for you. Yesterday I was at 25k. I keep going with the watchful waiting, no treatment, no drugs.
Carl

Hi Carl wishing you lots of platelets and that you get an increase soon.

Wow 65k Yeah!

Still watchful waiting was 51k now 43k.....still no treatment! Just been diagnosed with B12 deficiency and started B12 injections today.

Hi!

Do not consider a change from 65K to 41K as a real drop. The value is on the same range.
I am also in watchful waiting with values around 30K (sometimes 20K sometimes 35K).
I am much happier like this than with steroids. After 3 months of pred I had to deal
with side effects for at least 8 months.

ecarlon good luck too I agree if I can avoid the meds and stay safe I will be happy...normal would be great but hey a bit unlikely for me I think!

You are right about range I was disappointed that they were going down but not devastated as its around the same ball park!

Quick update last count was on Friday 41k so holding steady,so still no treatment.Taking high does vitamin c and started on vit b12 regime.Back to hemo in 3 months unless I am concerned and then I will get a test before that.

as ever thank you for your support.

Back for another blood test tomorrow fingers crossed they have held steady and I can dodge treatment again.

Hi folks

Just got my results back today, count is 43k so holding steady with no treatment yay.Hopefully another 3 months of watchful waiting.

How is everyone else going ?

Hi,
glad to hear that your counts stabilized. I am in the same watchful waiting since 1.5 years.
Counts are around 35k. No treatment for the time being, no signs of bleeding. Why do you take vit c?
Carl

Hi Carl

Some people, have found that high dose vitamin C can help with counts although the evidence is mixed..I take them as I have read that they can help strengthen capillaries .Each time I have gone into remission I have been taking them so I figure why not! For a control freak like me it at least makes me feel like I am doing some thing hehe

sounds like watchful waiting is working for you at the moment too.Great news that you have managed to dodge treatment.

As soon as I got my head round the fact that a safe count was what was needed rather than a normal count I felt better and I am not continually disappointed.!!


Katie

I'm just curious as to how many people on here have always been in watchful waiting since diagnosis and never had to treat? And for how long? I'm going on six months of ITP, with my counts in the 30s for a few months, then ranging from 30-122 with often fluctuating counts. The past few weeks, I've been around 50k. I hate the fluctuations, but am so glad I haven't had to treat. Hoping I never have to!

Hi Taz / All

I have been on continual watch / wait since I was diagnosed in 2012.

Last big flare was last June, went on Steriods and other drugs to assist with the side effects. Although I had no choice at the time, I have opted to try to refrain from treatment where possible. My counts go all over the place, rarely are normal, so have never been discharged from hospital follow up (outpatient). The frequency of bloods and other tests have been dependant on what counts are like. When I go low, they want to see me, more frequent.

The hardest thing I find is knowing when to go back in, in between. My ITP relapsed in March, after about 9 months remission after Which the doctors suggested splenectomy and alternative meds, but I have declined and opted to continue waiting.

I know my body and what has happened in the past, so try to hold back and not rush to the hospital at every sign. I currently get the nose bleeds, the rash, the spontaneous bruising, chronic fatigue and I hover almost like an expectant mother debating whether or not to go to the hospital. Controlling the anxiety around it all is tough, but I keep trying to put off hospital visits at the slightest thing.

I guess we all need to find our own way to settle into this condition, and I don't like any of the treatments I get offered (difficult patients). So sometimes think what's the point in going. I know the risks if my counts are low and somehow I make my informed choice on how I go about my life.

I learn by my mistakes, I rest when I see signs I might be low, drop strenuous / most activity that could involve risk and quietly try to sit things out. I appreciate this condition is individual, we all have different, yet shared experience so I would never advocate anyone follow anything I say. It's just my experience.

Until my relapse, my counts fluctuated like a roller coaster - since my relapse they have remained low with only slight shifts downwards and I have no way of equating any of it to my own past experience, because this time it's different again.

sorry I am rambling, I find this site useful, as after 3 years my friends are probably sick of it. As much as they try, I don't think anyone understands it unless they have it. Which is why I ramble on here every so often.
Sorry folks.
More rambling, I also have intermittent other low bloods, despite scanning every part of my body they have no definitive on any of that, I suffer intermittent neutropenia and chronic lymphtyopenia. So I figure I am autoimmune and it's clearly the badge of honour I wear. Enough said - see what my friends put up with. Over and out!