my journey, crazy Emily

Melinda wrote:

EmilyK wrote: Platelets down to 40,000. We leave for England on Friday, March 27 so I also need to talk to the doctor about making sure I have enough Platelets for the plane ride.

I don't know if I was in LaLa Land or what but I never questioned if I could fly with whatever my count was - we moved to Tokyo while I was on 60mg of prednisone, later to Hong Kong & I can't remember what my count was then but still on prednisone, flew on vacations to Thailand & China & Singapore, also on home leave via Egypt & Italy & London - I just went and never asked.

Good luck on your trip!

I flew with counts in the single digits back in August. Granted, I didn't know it at the time (I was diagnosed within a couple days after returning). Make sure you have your prescriptions with you, relevant medical info and possible medical ID of some sort, and make a point of knowing where medical facilities are in the area you're going to. Outside of stuff like that, I was never told not to fly and don't recall ever reading anywhere that you shouldn't.

Thank you. We are going to have the indium scan so i will actually be at the hospital monday, tuesday and wednesday so i feel pretty safe once we get there. I just wasn't sure if the cabin pressure changes during flight put me at some medical risk during the flight if my numbers are low. Sounds like that isn't an issue.

This article says 40k. It's for cancer, but rules should be the same:
www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-practically/travel/when-not-to-travel
This sounds overly cautious to me.

Various other sources recommended: carrying[strike] methotrexate[/strike] [tranexamic acid???] (Rx from your doctor) to help stop any bleeding. Be sure to keep seatbelt fastened in case of turbulence. But not too tightly because it can cause bruising. If you fly against doctor's orders any travel insurance might be voided. Nose bleeds can be a problem due to low pressure and dry air, so be prepared. If you show up with lots of visible bruises you may be denied boarding.

On a positive note: You are at decreased risk for deep vein thrombosis. You might arrive with higher platelets than when you departed, as low cabin pressure stimulates platelet production.

Edited to delete incorrect reference to methotrexate

Whoa, what the heck is that? Methotrexate doesn't stop bleeding....it's a chemotherapy drug. Plus, cancer patients do have a much greater bleeding risk since they have fewer large platelets than ITP patients. A count of 20k can be very serious for a cancer patient but not necessarily for an ITP patient.

Couple of other flying with low platelets things. Be extra super careful that you don't get a suitcase dropped on your head as people clumsily take them in and out of the overhead bins. Watch out too for getting clunked with heavy bags as people go down the aisles. Keep your seatbelt on all the time, turbulence could bang your head sideways or up above.

I also read here a while back that you could get a little ear bleeding due to pressure changes and tiny blood vessels in your ears but that wasn't portrayed as serious.
Erica

My husband accidentally dropped a very heavy bag on an old lady's head. He felt horrible about it. Yes, it does happen even to those who are careful!

Thanks Sandy regarding the incorrect methotrexate reference. That's the last time I will use information from a bulletin board without double checking! I think they meant tranexamic acid. Does that sound right? The two sound just enough similar that I missed it.

I think cancer is a whole 'nother subject - agree with Sandi!

Like I said - I must have been in LaLa Land as I never dreamed that I would have to get permission to fly or to ask if my count was ok to fly - I just went, period! I'm thankful for LaLa Land because I would have missed out on a lot!

The things Erica mentioned are common sense "dos" for anyone who is on an airplane. Never did see the bit about not flying because of bleeding in the ear. Did one heck of a lot of long distance flying those years we lived overseas and never asked - never had a problem either - there were times I knew my count was decent, times I didn't even know what my count was and on the plane we went.

(Granted I'm not telling anyone to do what I did - but I'm glad I did what I did!)

Yes Rob, tranexamic acid is right.

Count went up today, from 41,000 to 52,000. I know its just one count but it is one count going up after going down down down. However i have more symptoms now. Blood blister in my mouth and new spot under my eye. I cannot interpret anything on my body. I was feeling some sense of positive movement and not 30 minutes later out pop these symptoms. The ups and downs and weird sometimes unrelated symptoms is really hard.

Platelets were up again today (71,000)!! YAY!! I am hopeful that is a trend and not a blip. Doctor is very comfortable with me flying to England tomorrow. He was going to drop my Prednisone to 40mg from 50mg, but since I won't have any counts down for a week, he decided to keep things the same until I return. I hate the Prednisone, but I am ok being conservative and getting a count on Monday (April 6--my 51st birthday) and then hopefully dropping the dose.

I don't know if the rise in counts is a "normal" response to Rituxan or if most people end up with platelets going up more quickly. As long as they stop dropping, I am totally content, just wondered what others may have experienced.

I am looking forward to my spleen/liver scan and meeting Dr. Provan on Monday.
Hugs to all.

Good luck, Emily! Have a safe trip. I want a full report.

When i get back i will do a separate thread on just the details of the indium scan to make it easier for someone to find without my personal details. In the meantime, things have gone smoothly. I had the blood draw, re-insertion of the radiated platelets and first two scans on monday and the third scan today and blood draw. I have one more blood draw and scan on wednesday. Monday was a full day at the hospital. We got there at 9am and they did the first blood draw right away, but platelets did not go back in my vein until about noon. At 1 I had the first scan. They wanted me to wait until 4 for the next scan but i had my appointment set with dr provan at 4:30 on the other side of town so they did the second scan at 3:30 ish and then we took the subway across town to see dr provan. He is amazing!! It was worth coming to england just to get him to myself for an hour. He is kind and reassuring and calm.

We talked about my treatment and next steps if the rituxan turns out not to work or not work long term. He prefers promacta to nplate because he believes there are less drastic ups and downs. Because promacta is a daily pill rather than a once a week injection he thinks it protects from those swings. He was really concerned that I wanted to have my spleen out but I told him that all i want is information while there is no emergency. He was clear that getting off steroids is the goal and we talked about a tapering scheduling goal while my doctor monitors my counts.

I felt so much more hopeful in that one hour then i have felt since diagnosis in january. For those of you who live in the UK, you are so fortunate to have him and his expertise! I wish i could pack him up and bring him home with me.

And my platelets were up to 92,000 (from 71,000 on thursday) on monday! Hoping the rituxan is doing its thing and will last a long time. I know one count is one count but it is always good to see a trend up.

Thanks for listening.

Hey Emily, you can't call it the subway, it's the tube!

Glad it's going well. Look forward to hearing the result.

Emily! I am SO happy for you! I told you that he was the Man! I've never met him but I have known of him for years and I'd even put meeting him on my bucket list. I'm glad he helped.

Good news Emily x

I reduced my prednisone from 50 mg to 40 mg yesterday on dr provan's advice and approval from my US doctor (he actually responded to an email from me). I am exhausted. I am not sure if it was all the walking around london outside in the chilly air or the taper or probably a combination of both. Now we have two days in london now without any medical stuff!! I will be very anxious for my platelet count on monday when we are home. Here's to hoping for good numbers with less prednisone.

Thanks for listening and checking in. You guys are the best.

Platelets were up again today (that is a record three weeks in a row!!!). This Monday, currently 119,000 up from 92,000 last Monday. It is my birthday and that was a great present. Tomorrow I will drop from 40mg of Prednisone to 35mg. I wanted to go to 30mg, but doctor thought I should taper more slowly. Hoping for some light at the end of this prenisone nightmare along with some stability in numbers. I am way too scared to get my hopes too far up and be crushed, but it's hard to hold back some believe that life can normalize in the new "normal."
Hugs to you all.

Great news and happy birthday!

Life will be normal again. Promise!

Did I tell you today how much I adore you!!

Well, I was starting to have some sense of optomism, but that is starting to wane. Monday my count was up to 118,000, so I was having a nice rise in counts (41,000, 71,000, 92,000, 118,000 all on 50mg of Prednisone) and hoped that meant the Rituxan was working. Today I went down to 104,000. I am telling myself that isn't much of a difference, but other than the last three weeks, I have never had my count rise once it starts to drop. I did drop from 40mg to 35mg of Prednisone on Tuesday, but again, if the Rituxan was doing its job, I would not expect a drop from a 5mg drop of Prednisone. I think the scariest part is wondering WHAT IF NOTHING WORKS! I know that Promacta/NPlate works 80% of the time and that was Dr. Provan's next suggestion for me if I continue to drop. When I tried the NPlate (granted it was only four times), I dropped all the way down to 7,000 from 90,000 in one week.

The merry go round continues and I HATE IT!

Emily:

You asked, "What if nothing works?" If nothing was working, how'd your counts get to 104k? Obviously, something is working. It's way too soon to worry about that anyway. :blink:

Counts are not an exact science. There is a margin of error, so seeing small drops and rises is a very normal thing. You can't assume that you will continue to drop. I think everyone goes through that at one point until they end up surprised one day. You could get a count done tomorrow and it could be 111k. Counts fluctuate.

Drops are part of the process with N-Plate. It's probably going to happen if you use it and it's just something that you have to accept and live with for a while. I know you don't like that and probably expressed that to Dr. Provan which is why he suggested Promacta for you. Promcta can take time to work though so you'd need to be patient. There is no quick fix for this. Counts do not have to be normal and all is well as long as you don't have bleeding symptoms.

Come on, where is the confident woman who just came back from the UK all chipper and relieved?

Emily, once you are in the normal range, like you are, there's no need to keep having platelets go up more. Please don't worry about some minor ups and downs at this point! You're doing great and 104K is plenty.

Thank you pulling for trying to pull me back from the ledge. I will put my big girl pants back on and try and stop moaning. I knew i needed to put dr provan in my suitcase and take him home. I should have recorded the conversation so i could play his reassuring voice over and over.
As much as I hate the prednisone at least it works when needed.

Emily, remember that response to Rituxan is not an all-or-nothing thing. Your counts may drop for a while, but level off at an acceptable level. Ellen is enjoying a nice partial remission with counts in the 40s since August, after peaking around 140k. Good enough!

Rob,
Thank you. That is very helpful information. I was thinking it was an all or nothing response and did not anticipate any drops if it was "working."
Emily

Nose bleed today at the office so I am not feeling good about the number staying in an acceptable range. Test on Monday to confirm. RRRRR.

Slight or gushing?

More than slight, less then gushing. Took a few minutes to get it to stop. When there is blood in my nose, it is usually my right nostril (as odd as that is) and today it was the left one. I hate the color of red. I have not touched my nose since then. I don't know if there are clots in there or not and I don't want to start anything. It will be pretty embarrasing if it starts to bleed with a client.
I am on 35 mg of Pred and have been since 4/7. Was on 40mg for 7 days before that. Seems like a normal taper, but maybe even that is too fast.

You can scold me Sandi. Count today was 98,000 (on 35mg of Pred for a week). My nose has been crusty with blood since Friday so I was not hopeful that the count would be ok and was emotionally prepared for a dip, but this was a wonderful surprise. It is hard to ignore things like red dots and bloody noses, but apparently they are not relevant to count numbers at least not right now. For a frame of reference, I had my last Rituxan treatment on March 16, 2015 and was on 50mg of Prednisone at the time.

Also, I got my Indium Results back, which I will post in more detail on that thread, but the end result is that my platelets are predominately destroyed in my spleen and at a rate of about 2.5 days. Dr. Provan says that non-ITP people get to keep platelets for 7-10 days. Glad I had the test results.

Hugs to you all for your support.