Watch That Hemoglobin!!!

I had to stop treatment after 4 weeks. Between week 2 and week 4 my hemoglobin dropped to 6.1 from 11.1, and platelets dropped to 45. I went in the hospital for 4 days and received 7 units of blood. This got the HGB up to 9.1 and they let me out. My doc, who has treated hundreds of patiens with Peg and Riba, said he's never seen this before and he said we will have to do some serious soul-searching before starting treatment again. I now have an Oncologist/Hematologist who gave me a shot of Aranesp to stimulate red cell production. I'll see him again Wednesday to see if we need to continue that treatment. My desire is to get these numbers back up and start Tx again ASAP.
Interestingly, my ALT and AST have come down into the 20's. This is the first time they've been normal in 10 years. I got a PCR on Fri. and should have the results in a week or so. I've been in bed almost constantly since the end of week 1 of Tx, but I now feel good enough to go back to work tomorrow. I think if I had been getting CBC's every week instead of every two weeks we would have caught this before it got so bad. Please, if your energy level drops to nothing and you experience dizziness, get a CBC. If your hemoglobin goes below 8 it can be life-threatening. Also, stay hydrated. That's important for your kidneys. They thought mine had failed, but I was just dehydrated, and after 4 Liters of Sodium Chloride, those numbers came right back into line. Best of luck and easy sides to all.
Craig

[Ambush]

Craig,  I agree closer monitoring would be beneficial.  My HGB didn't crash until almost 8 months into tx when it dropped to 7.9.  Man, I know what 7.9 felt like.....I can't imagine what you must have felt like at 6.1.  When I called the office to report how badly I was feeling, I wasn't taken seriously and told to call my PCP.  I was having great difficulties getting copies of my labs because they wouldn't give them to me at the office.  I had to contact the hospital to mail them to me and many times it took two or three requests.  Doc doesn't want me knowing anything about my disease.......and told me so.  By the time I received them, I noticed the numbers had drastically changed and called to question them.  All of a sudden someone bothered to look at them and they rushed me in for a Procrit script.  By then, I was very sick.  As I finished tx on Friday, I won't be returning to that office for my follow up appointment scheduled for October (I had to fight for a 3 month PCR - he was adamant about going to 6 months).  If I fail and have to retreat, believe me....it won't be with the same office.
I'm glad you're feeling so much better and hope you can find a way to manage and get back on tx.
ambush :)

[jonihs]

I also had that weird feeling in and behind my eyes. It lasted a little over a month, but is gone now. Also wide awake early for the first 2 weeks. Took naps during the day and now am back to normal sleep pattern for me(2:AM to 10:AM)  Joni

[Ella Mackenzie]

I get a cbc every week due to low rbc and platelets and am monitored by hematologist. Platelets are now at 45 so pegysys dose was reduced. I get blood transfusion if my hgb goes below 8. I have had two so far and am almost finished with treatment.My doctor has been willing to do anything he can to counter side effects in order to continue tx. I can't imagine what it would feel like to go down to 6.1. Many docs use procrit to help with low rbc.
Good luck and take care

[donAlfonso]

Craig, just wonder what your counts were prior to starting tx (sorry if you've posted that before)?  If they were normal, that's a really rapid drop.  Still, not sure if weekly tests would have mattered much for platelets, as there is not much in the way of tx for that.  Of course it is important to be aware of counts, but weekly CBCs seems like overkill.  My counts were low-normal at start, have gradually dropped over 6 months, hovering around 10.2/51 for a couple of months, specialist still thinks monthly bloodwork is enough.  My PCP had bloods done for yearly physical 2 weeks ago, she said results were fine, but when I took a peek at chart, my platelets were 48.  I didn't say anything because I don't want to reduce/stop tx.  Waiting to see latest results from hep doc, hoping count rose above 50 again.

If your counts return to normal, will you try the same tx again?  Anyone know if there would be any advantage to switching from Pegasys to PegIntron (or vice-versa) in a case like this?

dA

[MajNeni]

Hi, Craig,
I had an adventure much like yours 2 years ago.  I am going away to FL for 11 days, but if you'd like details, write me over at ya hoo.  
I did finally start up again w/new doc and Pegasys combo and lots of monitoring and supports (Procrit, etc.)  I finished tx in January, 48/48, and I just got the word I am UNDETECTED at 24 weeks post tx.  I was a 1b, with Stage 1/Grade 2, high VL.
I hope you feel better soon, and I believe you can still beat this dragon!
Much thanks to all my friends here!
Maj Neni

[Ella Mackenzie]

The reason for my weekly cbc is that I have very low rbc. It is not overkill if one's hgb and rbc remain extremely low, in fact it is prudent. This way, my doctor knows whether or not to lower my dose or to send me to emergency for blood transfusion.

Also, weekly cbc's are important to monitor platelets because if your platelets get too low, you could bleed internally which, as you can imagine, could cause a host of other problems. Most doctors begin to get concerned when platelets get below 50, although many chemo patients have lower platelets. And the platelet transfusion is used for emergencies but only lasts for a few days.
The last two times my platelets went below 50, my doctor reduced my dose. But I get copies of all my blood work and know exactly what is going on with my blood at all times, which works best for me.

[Ella Mackenzie]

I am so very happy for you. YOur words are full of joy.
I am two steps behind you and just can't wait.

[layla]

Congrats!!!!! How exciting for you and I am so happy for you. I can't imagine how great you must feel about this. Yahooo!!!LL

[donAlfonso]

Ella, yes, I guess it does make sense to have weekly CBC once it is clear there is a problem.  But Craig's numbers dropped so quickly I'm not sure what could have been done.  Anyway, really, I see your point, and now wonder why I'm not being monitored more often, as I am hovering at the problem point for both hemoglobin and platelets.

Was Procrit not able to bring up you RBC counts enough, that you still required transfusions?

Must feel great to be so close to completion.  Congratulations!

dA

[Ella Mackenzie]

Don,
I am on Procrit: 60,000 each
Wed but just doesn't seem to work well enough. I might get one more transfusion before this is over. I feel like a vampire because after the transfusion, I feel almost alive again!

Yea, I'd keep an eye on your platelets. They may stay just where they are and you will be fine, but wouldn't be good if they went any lower. I got the cbc results from my hematologist and I saw the low platelets and wasn't going to tell my liver dr.  because I didn't want him to cut my dose in half, thus extending treatment, but I ended up telling him and I begged him to let me continue full dose. It was he who said it would be worse to deal with internal bleeding than to continue another week, so I reluctantly followed his instructions.
Good luck to you. Somehow we get through all these various side effects.


Chevy,
You are so right about these last weeks. I am counting the days down and time feels as though it is standing still. Each night I cross off the day on the calendar and I swear it is the highlight of my entire day!
Thank you for your continued support. You have been an inspiration for me.

[DebbieDo]

Wonderful that you are getting back to normal. I lay in bed each night thinking about post tx..........i cry sometimes thinking how tx has changed my personality and my outlook on things......and no energy to say the least. Working a 5 day week schedule, with draggin my butt the last couple of hrs a day has not been pleasant for me. I am hopefull for a complete withdrawal from all these meds, not only to kill the dragon but to regain my sanity........God Bless you, Chevy.......hang around, we need all the inspiration we can get.........It's a very tough road.....Debbie  :)

[fsplink]

I'm thrilled to hear you're feeling awake again. I started reading this forum right before you started tx. You seem like you handled it so well. It makes me feel better knowing that when it's all over you are coming out ok.
I've been trying to get started with tx since last Oct. Between insurance only paying 80% and other problems it's been a lot of red tape. But, now I've arranged to go though Managed RX. Everything has been approved, just waiting on meds now. I've always been afraid that I might end up being worse off than I am now after tx, so, it's great to hear you've been though it and you're starting to feel normal.
I guess I'll be posting a lot more now that I'll be starting to head down that road.

[fsplink]

Yes, I think my email is posted. I was all ready to do this until they said the meds would be here in a few days. I keep waiting for something else to happen to postpone it! My husband is going to wait to start his treatment with the clinical trial.
I think he's just chicken and wants to see how I handle it. I keep telling him it's different for everyone so that's not going to help him.
As for the rhuematoid arthritis,they are not so sure now.  They said I tested positive for cryglobulins which indicate my symptoms may be from hep c instead of RA. All I know is my feet hurt and that's what started all this in the first place.LOL Just fix my feet and I'll be happy! Maybe some of that marshmellow cream would help.

[fsplink]

I just looked and my email is under Starla in the patient network.

[honey1616]

Starla,,,Hi  So hubby is going to use you as the guinea pig and if all is well he will start LOL   Hey,,,Smart Guy!  haha  Good Luck and yes,,,come here often and let us know how you are doing!  Since I started tx,,,the bottom of my feet hurt alot also and yes marshmallow cream, or foot soak would be simply wonderful!!