Low blood counts

Wisteria83

This is my third week of treatment, and so far it seems like everything that can go wrong is going wrong.  Last week I started having anal leakage and I was mortified because I certainly didn't expect it only a week and a half into treatment.  Maybe TMI here, but the consistency was like pudding and I never even felt it.  I noticed it only when I went to go change for my radiation treatment and I had a small meltdown.  A nurse came and talked with me and made me feel better about it at the time, but even she said it was early for that side effect to kick in.  I have to wear a pad all the time now, just in case.

Then Monday, I got to the doc's for my blood test and appointment with the med onc and my blood counts were down.  So she took me off the Xeloda until further notice.  Today I had labs again and they didn't go up, they went down further. WBC and Platelets are critical.  RBC is close to critical, but she's still not ready to do a transfusion, which is fine with me, but I'd go for it if helped now.  Dr. ordered me an anti-biotic prophylactically and also because I'm having some indication of possible UTI.  I left a urine specimin.  I also have to have blood drawn tomorrow, Friday and Monday to keep monitoring it.

They told me that my tumor pain should be gone by the end of the second week, but it's still with me, and I'm feeling the burning that I expected to feel...later, not yet. I have little red spots & bumps all over me.  Some are from irritated hair follicles from the radiation and others are Petechiae from low platelets.  I am still waking up during the night every 2-4 hours like clockwork in order to take pain meds, so they increased my fentanyl patch dose, and said take the oxycodone...4 every 3-4 hours as I need it.  I'm already opioid tolerant as I'm a pain management patient for a different issue.  My husband says he knows I'm in pain because he can hear me moaning in my sleep.  The last several nights, every time I've woken up I kept hearing this "whooshing" sound in my head.  Weirdest thing ever.  At first I thought it was something outside, and I even opened the window to listen better.  Turns out it's my pulse that I'm hearing.  I told my dr. today, because I thought maybe I have some cool new super power...alas, it's because I'm anemic that I hearing it.  Bummer, lol.

I'm sorry I'm being such a whiner.  I really am trying to stay positive and to keep a sense of humor, but I have my moments when I just want to sit by myself and feel sorry for myself.  I'm stressed and pissed off, but mostly sad. I'm thoroughly exhausted.  The slightest exertion makes me feel like I ran a marathon.  I have a flight of 15 stairs in my house and I'm winded by the time I make it to the top.  

Thank you all for allowing me to vent. My husband is being amazing.  There's no way I could get through this without him, but for all the effort he's putting in, the last thing I want to do is add to his stress by venting to him.  He's in this with me, and I see how it's affecting him.  I don't want to add my worries to his own.  I can't help but worry though.  Being off the Xeloda isn't helping my cancer treatment, although I understand that if I stayed on it, it would kill me.  I have to wonder if not taking it changes my prognosis.  The cure rate for this cancer is high, and that's wonderful, but as I understand it, it's high because you go through all the treatment. By missing a week (or more) of chemo, is that going to change my change my chances for a good outcome?  The chemo helps the radiation work better, the radiation is more important than the chemo.  BUT they wouldn't give the chemo if it wasn't necessary, right?  They don't make up missed chemo treatments, but they DO make up missed radiation treatments.  Once I finish radiation, I'll no longer take chemo.

I have to admit, that I'm scared.  I'm scared of so many things that are unknown.  How do you deal with fear?  How do you deal with setbacks?

Thank you all again.

Wis

 

 

 

RoseC

Hi Wis,

Hi Wis,

I'm sorry you're having all these side effects so early on in treatment. I don't want to alarm you, but please ask your oncologist to test your blood for TTP. It's a very, very rare side effect of the mitomycin and can be very dangerous if not treated early. The red spots you're seeing may be an indication of TTP. I was treated for stage 2 anal cancer in 2008 and developed TTP four months after treatment. From what I've read and been told, most incidences of the condition appear within a few weeks of receiving mitomycin but sometimes (as in my case) the condition can appear months out. To make sure it's not TTP, the lab techs or doctors will examine your blood under a microscope to see if the red blood cells are being sheared.

Again, TTP is VERY rare - it was such an issue for me though that I'd feel neglectful if I didn't warn you about it.

Take care,

RoseC

eihtak

Wisteria83...

Oh how I wish we could sometimes just be there in person for each other and hold hands through all of this....the unknown, fear, and setbacks are so very hard to deal with, but know that many of us have been there on some level at some point. We are here today to help you....and that is A KNOWN !!

For me, I rely pretty heavily on prayer in those moments. While that may not be the way for all, I genuinely feel some sense of relief in admitting that I have done what I can and now the rest is out of my hands and in the hands of the One who can handle absolutely anything.

We have had other members here who have either not finished chemo or had less radiation than the standard dose for one reason or another and they have had a successful outcome.....do not spend extra worry on such right now and concentrate on getting all the recommended radiation. Being anemic can lead to a variety of issues as well, can you request that transfusion? I had a couple blood / iron transfusions due to being anemic and I can tell you I felt soooooo much better following them. I was first treated over 6 years ago and still take iron supplements daily.  If I miss a couple days I can sure tell.

Please stay in touch, and know that you will be in my thoughts and prayers for easier days ahead.

katheryn

mp327

Wisteria

Sorry to read that you have gotten off to such a rocky start.  I agree with katheryn--ask your doctor if a transfusion is possible.  As she has also stated, for one reason or another, some people do not get all of chemo and still have good results.  Radiation is the dragon slayer in this game, chemo is just there as a little reinforcement.  I hope you and your docs can sort all of this out and that you can get the most effective treatment that your body will tolerate.  You will be in my thoughts and prayers.

Martha

Mollymaude

Wis

Wis, I'm so sorry things aren't going well for you. I had times like that during treatment as I think most of us did. I agree with Katheryn that you might feel better after a transfusion. I also agree that prayer is invaluable at a time like this. It seems like lots of things are coming down on you all at once with the anal leakage, low blood counts, fatigue, pain, and then having to wonder if holding off on chemo is going to mess up your treatment. You are definately not whining! You have so much going on I had to keep looking at your entry to list them all!! I think my low point was about midway thru treatment when some friends came over caroling at Christmas time and I was so sick, overwhelmed, depressed, I sent my family out but I couldn't even stick my head out the door to thank them. I still feel bad about that. It does gets better. People in this chat room are praying for you, as I'm sure many of your friends and relatives are too. Sometimes a good nights sleep and getting the pain under better will make a lot of difference on your outlook. Keep us posted on how you are doing, we are all pulling for you!

sephie

so sorry for your pain

wis,,, i just wanted to comment on the leakage.... i had it very early ....about 10th day if i remember correctly ,, so you are not alone on that issue.... you can do it....oh,  by the way,,,, i still have leakage sometimes and surprise clumps of mucous or poop.... and i am 7.5  years post tx.... sephie

mp327

sephie

I have the same issue with mucous and clumps of poop, as you put it.  I am 8.5 years out.  I guess some things just will never go away.

 

Wisteria83

mp327 said:

sephie

I have the same issue with mucous and clumps of poop, as you put it.  I am 8.5 years out.  I guess some things just will never go away.

 

clumps and mucus

UGH!  Wonderful.  I guess white pants and skirts are now a thing of the past...

Mollymaude

Wis

I don't think everyone has clumps and mucus. I wear a very thin pad because of small amounts of stress incontinence of urine. Once in awhile I have a very small amount of anal leakage, not enough to get on pad even. Just shows up on TP. Urinary incontinence has gotten much better. I have passed gas and blood clots together but not for a long time. It's one of those things you just have to wait and see about. I still had better get to the bathroom when I feel the urge! And I would be nervous not wearing a pad.

Phoebesnow

Leakage

i have none.  I had urinary leakage during treatment but that cleared up a few weeks after it ended.  I have urgency issues in the morning.  

 

I hope things ease up for you. Pray, pray, pray!  He hears you...

rlr000dc

low blood count

When my blood count was low I was very fatigued! My bathroom is only about 8 steps away and it was all i could do to get in the shower, my mom would literally catch me as i fell into her arms nearly collapsing. I had to keep getting fluids for dehydration because my body and stomach would not endure any fluid. Once i got the transfusion i began to heal quickly (after all tmt though). The only  thing about delaying tmt is that you will have to deal with all this longer. I am happy that you are letting us know whats going on and i think i can speak for all of us when i say its alright for you to vent to us because we have been there and had felt the same way about venting to our loved ones who were our support team. We know how much this is to handle!

ttys

Rhonda