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Frustrated...

deanna14
Posts: 734
Joined: Oct 2008

I didn't get chemo again today. My platelets were normal this time, but the WBC had dropped to 2.1. He said they were not at a dangerous level if I were to acquire an infection right now. However, if he were to give me chemo, they would drop to a dangerous level and that it just wasn't safe. Also, my RBC dropped a little more. What I don't understand is that he told me next Monday before I have my lab drawn again to walk briskly around the parking lot a few times to get my heart pumping and the blood circulating. He said that I need to start eating better and exercising more. I have lost 6 pounds in the last 2 weeks. I just don't understand... I am eating better, healthier meals than I have in the last 7 months since this all started and I quit weight watchers! This last week I have also been more active and even took the trip to St. Louis for my Grandmother's birthday. I am exhausted all of the time, I can't get enough sleep. I'm even sleeping through the night most of the time which is unusual for me. I guess he is saying I am not pushing myself hard enough. I get a little angry and frustrated and maybe that is what he wants from me so I will push harder. It is hard to sit there and listen to everything you are doing wrong when you feel so physically, mentally and emotionally drained. What gets me is those doctors can say whatever they want, but they don't know how it feels. I am 39 years old, I'm tired, I'm either hot or cold all of the time. I could care less about sex (not normal at 39), I'm bald and I have gained 30 pounds!! Last July, I was a healthy 39 year old woman, now I can't even walk up and down the street without panting. Sorry if this upsets anyone, I just needed to get this all off my chest and you girls seem to be the only ones who can truly understand. I guess I am just having a pity party and need to get over it.
My husband and I planted grapes vines and blackberry bushes today. Then I took a walk up and down the street. I sure hope I am growing blood cells for next week!
Thanks for listening. I've gotten it out and now I'm saying a prayer and turning it over to the Lord....
God Bless and hugs to all. You are all so strong.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm so sorry, honey. You are at exactly the same place (Round 4) when I started having trouble,...and at least you already have all your radiation in! Are you pushed back another full week? Please try not to be scared about that; the last chemo you had is still working in your body. They can only let your bone marrow get compromised so much; you can't let it get to where it cannot recover without a transplant. Will you get a Neulasta shot tomorrow to build those whites? Any talk of a blood transfusion for the reds?

I know EXACTLY how you feel and you have every right to indulge in a little pity party. I get so MAD at my body for letting me down, when I've always considered myself so STRONG and was so sure that I would push through my chemo undeterred because I was otherwise so healthy. I have YET to be told by my oncologist to exercise, and I've ASKED about it. (He knows I was a 'gym rat' who did 10 miles on the ellyptical machine 6 days a week, before I had cancer.) My oncologist's reply is 'REST'; 'don't over-do', and I honestly think it would be dangerous for me to do anything too physical right now. Like I can't imagine wrestling with my blackberry brambles today! I'm proud of you for that, and for that 6 pound weight loss! I dropped 4 pounds since my chemo Thursday, but just because all food tastes like mold right now.

We are a pitiful pair, girl! My oncologist let me have my last chemo round, in his word 'pushing the envelope of safety', after my 10 day delay, and today my heart actually HURTS when I walk up the stairs and I am afraid to drive my car with this shaky malaise that has set in as my counts drop and drop from Thursday's chemo. And sex?? I couldn't feel less desirable if I tried. I know, with radiation coming up and all that implies sex-wise, that I should be 'making hay while the sun shines'. But I am too tired and too scarred and bald and breathless to encourage play-time.

I am scheduled to go in this Thursday for another blood test to see if I'm okay, but I may have to go over sooner if I start feeling any worse. Maybe you could ask about a blood transfusion when you go in for your Neulasta. YOU are strong, Deanna. This is a small bump in the road. Worthy of a good cry. But just a bump. I just feel so bad for you; I know how badly you want to get this over and done. ((((Deanna))))

deanna14
Posts: 734
Joined: Oct 2008

Thank you Linda for your kindness, encouragement and most of all your understanding. It was so discouraging to go in, thinking I was feeling so much better and be told that I still was not in the safe range to have my chemo. I want to be safe, but I struggle with getting in a hurry because I just want this over with! I hate that you have these feelings as well, but it is encouraging for me to know that I am not alone and that the things I am feeling are normal.
No mention of an extra dose of Neulasta or a blood transfusion. He also says that already having the radiation is a contributing factor. The pelvic bones are a big contributor to the production of blood cells. I got the impression that he thought another week break would fix the problem. In the mean time, I guess I will pray harder, move more and eat as healthy as possible. I will try to focus on the positive... 6 # weight loss, my CA 125 was 7.6, and I am sleeping better than I have in a long time.
You take really good care of yourself! Call your doctor before Thursday if you continue to feel that weak. Maybe they will give you a blood transfusion and some Neulasta to help you through. I am so happy for you that you are done with your chemo and that you got all 6 treatments in. At least we aren't pitiful alone! It is kinda difficult feeling sexy without any hair.... anywhere! LOL. Even though my husband says I still am! Rest and think good thoughts... and grow those blood cells!
Thanks Linda.
Love and Hugs,
Deanna

Ro10's picture
Ro10
Posts: 1425
Joined: Jan 2009

I am sorry to hear you are so tired, too. It must be hard to not be able to do much when you did so much exercise before. I pray that each day you will feel a little stronger. Sorry to hear that food is still not tasting good to you. Hope that all changes for you soon, too. With no more chemo maybe the food will start tasting better. Hang in there and take a day at a time. You remain in my prayers. HUGS to you.

Ro10's picture
Ro10
Posts: 1425
Joined: Jan 2009

I know how disappointed you must be. Sorry your WBC and RBC are too low for you to receive chemo, but you do want to be safe after the chemo. Wish I could give you some of my blood counts and some of my veins, too. Sorry about your weight loss too. It is frustrating when you think you are doing everything right, and don't have the energy to do things differently. I feel for you and all the problems you are experiencing. Feel free to vent and say how you are feeling. There are no bad feelings. We all need to have a pity party sometimes. Continue to keep those prayers up and I will say some extra for you, too. Keep strong and know that you are special. HUGS to you.

deanna14
Posts: 734
Joined: Oct 2008

You girls are so wonderful. I don't know what I would do without all of you and this resource.
I did my fair share of venting to my family today and they are wonderful as well, but it is different when you are sharing with friends who really do understand what you are going through. So thanks for being here and know that I will always be here to help all of you out if I can.
Are you still in Florida? When will you be starting your radiation treatments? I know that you will breeze through them. You are so strong, I admire you for that. Know that I continue to pray for you and the rest of the girls as well.
Take care....hugs.
Deanna

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Vent, vent, vent. I'm sending you big cyber hugs, to you to Linda. Ladies it does get better after treatment. You're almost there. I would (and still do) sit, put my mp-3 player in my ears and take deep breathes for about 20 minutes. It gets the oxygen really flowing and gets rid of stress. Hmmmm and sex; after having the internal radiation we don't call it sex anymore, we call it physical therapy!!! I'm finding that Flax oil is making me feel very energic. It's suppose to help build oxygen in your body, tastes nasty but I feel it's working. I walked 1-1/2 miles yesterday in 30 minutes and that's damn good for me!

Know I am always thinking of you and praying for you (all of you). Take care, if you are tired, rest!

MIND, BODY AND SOUL!!!!

Hugs.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Linda and Deanna, I feel for you both. My blood tanked just before round 5 too. Another week and meditation did the trick. Hang in there. I'm trying to push the exercise but I am panting just going up a flight of stairs!! Are we supposed to do both - push and rest???

I'm dealing with the uncertain right now which as we know can be torture. I finished my 6 rounds of chemo nearly 6 weeks ago and know nothing about the result!!! Why is this?? My baseline was a PET not a CT. My followup was a CT bc insurance denied 2nd PET (said I never should have had the first on approved). My CT showed "shotty" areas in neck and axilla lymph nodes - but with no prior scan, they can't say what this is. Is this crazy or what!!! Did I fall through the proverbial cracks between the insurance and my doctor leaving?

What do you ladies recommend I do?? I am going to request blood work at the very least. I am still fighting for a PET scan - others insurance companies allow this for uterine. I see my new doc next week and I hopefully will have a plan developed after I see him. Any suggestions?

Like you said, Deanna, it helps to vent and get it out. At least we hear each other. Thanks for being there.

Mary Ann

deanna14
Posts: 734
Joined: Oct 2008

Mary Ann,
I would appeal to the insurance company for another PET scan for comparison, otherwise you can only do as Linda suggested and use the CT you have as a baseline. I am also wondering if they could possibly biopsy the lymph nodes in the neck or axilla. It seems that these would be areas that are easily accesible for biopsy. I have also heard of CT guided biopsies. It wouldn't hurt to just ask your new doctor about it. Seems with UPSC, one can't be too careful.
Good Luck and take care. Feel free to vent whenever you need to. Thanks for being there and listening to me vent!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Linda and Deanna, I feel for you both. My blood tanked just before round 5 too. Another week and meditation did the trick. Hang in there. I'm trying to push the exercise but I am panting just going up a flight of stairs!! Are we supposed to do both - push and rest???

I'm dealing with the uncertain right now which as we know can be torture. I finished my 6 rounds of chemo nearly 6 weeks ago and know nothing about the result!!! Why is this?? My baseline was a PET not a CT. My followup was a CT bc insurance denied 2nd PET (said I never should have had the first on approved). My CT showed "shotty" areas in neck and axilla lymph nodes - but with no prior scan, they can't say what this is. Is this crazy or what!!! Did I fall through the proverbial cracks between the insurance and my doctor leaving?

What do you ladies recommend I do?? I am going to request blood work at the very least. I am still fighting for a PET scan - others insurance companies allow this for uterine. I see my new doc next week and I hopefully will have a plan developed after I see him. Any suggestions?

Like you said, Deanna, it helps to vent and get it out. At least we hear each other. Thanks for being there.

Mary Ann

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Pet scans are not generally approved for uterine cancer because of the crazy-high cost and number of false-positives or non-diagnostic results, but Peggy located an article that the FDA was looking at approving a number of additional cancers for PETs, and that endometrial was one of them. My oncologist mentioned that also at my last appointment, and seemed excited that the rules are about to change, even though he isn't a big fan of PET scans.

Maryann: have they not even been doing CA-125s? I think you'll need to consider that first CT-scan as your 'baseline', and then look for changes in your NEXT CT-scan. I really understand why that is little comfort to you now, and not all that satisfying. I was given a baseline CT-scan BEFORE my chemo, had a second CT at the mid-way point, and will have another now that my final chemo round is done as soon as my blood counts stablize again. (Don't know where they will find a viable vein to do the contrast in, but they'll just have to!)

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Linda, thanks for that info. Peggy, can tell me where I could find this info? Linda, I just talked to my nurse today about getting the CA125 - I will get blood drawn tomorrow so I'll at least have that next week for the Dr.

I guess you are right about the CT I just had. My "old" dr. didn't do a scan mid chemo b/c my CA125 was dropping nicely and he assumed I was responding well and he did not expect the PET battle.

I'm trying not to obsess about this situation, but I keep thinking about what you said about aggressive treatment in beginning to avoid a recurrence.

Mary Ann

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Deann, everything you have said tells me that you are strong. You are not holding back your feelings, you are not in denial and you are asking the right questions and reaching out for support- You planted- you did a task that will reward you soon. That's quite a lot and that takes a strong woman. If I didn't vent during my treatment days I think my head would have exploded- so no appologies to this group is needed. As for fatigue and exercise, I only remember that I too was exhausted most of the time. A short walk around the block was a big deal and sometimes even that was too much. My husband would take me for short rides- we called it airing me out- so my feeling is you are experiencing what many of us go through and you cannot do more than your body wants you to. All my doctors told me to do was, "Listen to my body."I never was expected to push myself - it pains me that you feel you have that much responsiblity over this monster. I was setback several weeks with an infection after my surgery so I understand how frustrated you are- I begged them to start the chemo but of course they couldn't ill I was all clear- It's a roller coaster you are on and right now it is mostly uphill. Take care of yourself- don't push yourself. It's very different and know that the treatment becomes part of your history. The cancer does not own you, The roller coaster slowly starts going down and that's when you start building up strength but you will know when that time comes. So just take care and yell out if you need to. Yesterday was my 3 month check up - I have graduated to seeing the doc every 4 months. I asked about a CAT scan (not the first time) and received a consistent response- not necessary unless I have specific physical symptoms for now the CA 125 (mine was 17) is a fair marker and the CAT scan wouldn't change their treatment of me. It was a good day- I went shopping and bought myself some warm spring t shirts,

deanna14
Posts: 734
Joined: Oct 2008

Thank you for your encouragement, understanding and of course being there to "listen" to me vent. Know that I am here for you too! I appreciate you pointing out my strength, sometimes it is hard to see in yourself. I am going to try each day to increase my activity, but I am also going to listen to my body. I took a walk today and tried to stay busy around the house and I will try to add a little more activity each day. I am eating well and praying that my body will be ready for the next treatment on Monday. That is all I can do... I am not in control of it. I will stick it out for as long as it takes to finish this treatment.
Congrats on graduation to 4 month follow ups. My doctor has said every 3 month CT's and blood work after treatment for at least a year. He is really very "goosey" about UPSC, he was very upset after my surgery that it was not the more common form of uterine cancer. I am not sure that CA 125 is much of an indicator for me. The highest mine has been is 11 and now it is 7.6 after radiation and 3 chemos.
I'm happy that you had a good day... and proud of you for pampering yourself.
Thanks again for the encouragement.
Hugs,
Deanna

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Deanna, I was told the CA 125 is a helpful marker but definitely not the only or the best marker. It is used with ovarian cancer but all my doctors have paid attention to mine for the UPSC. Just want you to know that a low CA 125 is a good thing that's what you're aiming for and so that is good news for you. "Goosey" that feels familiar- I always feel like the medical folks are talking around the subject of UPSC. It was different when I had my early breast cancer. phones ringing- I'm off. take care all. Barb

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