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No chemo today for me. Blood transfusion instead. :(

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

My platelets were down to 27 (need to be 100 to get chemo) when I went in early this morning for blood worrk with the hopes of getting my last round of chemo in me. So, no go. But I need to head back there in a few minutes for 2 units of blood which should almost guarantee (I hope I'm not jinxing myself here!) that I will be able to get my final round of chemo on March 23rd. A couple interesting tidbits from today's meeting with oncologist: My 'mono' count is good (I think that's a sub-set of your white count) and is an indicator that my bone marrow is recovering from the chemo. And my chemo oncologist said he talked with my radiation oncologist, and that they may only want to do the brachy vaginal internal radiation on me, and no external pelvic radiation. But he said that was really a discussion I need to have with the radiation oncologist. I was shocked by that, and will wait to talk with the radiation-onc. I had microscopic cancer cells in 1 of the 25 lymph nodes (found in a pelvic lymph node) that were removed, and microscopic cancer cells in the 'wash', and my assumption was that any lymph node involvement guaranteed I'd need the 5 weeks of external radiation. My chemo-onc has said all along that chemo also kills cancer cells in the lymph system and that's why they both wanted me to have all my chemo first before any radiation. (that and the worry that the radiation would compromise my bone marrow too much and make it hard for me to get all of my chemo.) I think everyone's cancer must be as individual as a snowflake. I figured with them wanting to give me all the chemo first, that they feared more DISTANT spread (like into the lungs or liver) more than cancer spread in the vaginal cuff or perotoneal cavity. I appreciate feedback from all of you on the radiation question. And perhaps once the radiation-onc sees my CT-scans and has a chance to review my surgery pathology at more length, the external pelvic radiation will still be prescribed. My chemo-onc considers me already in remission, and I don't know if that colors his thinking. Gotta head back to the clinic now for my blood transfusion: 2 units this time. I should be able to get my new CA-125 when I go back, so will post later with that news. Glad I didn't plan a 'last chemo' celebration for today. :(

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

My good news from today: My CA-125 is down to 12.9, so another drop! Woo Woo! It's gone down consistently with every round of chemo, so I am very happy about that. LOOOONG day, with 2 units of blood on a slow drip, I was at the clinic from 8:15 to 4:30. Next try for chemo March 23rd, and with the blood transfusion today, I hope to get my last chemo in me in a week!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

CA 125 Great news!! Sorry about the delay again.... what a long day for you. But...... One more treatment is so close to the end of the line!! I am so confused about your radiation. My vote is still out. It will be interesting to hear what the others say. This cancer is so aggressive that one tends to think that everything/any and all must be done to stay as aggressive as the cancer. It is a tough call. The answer will come and it will be the right one. May God guide you. Love your flowers too. We have had 2 'melt' days and now I can see all the work I did not get done last fall in all of my flower beds and gardens. Can't wait to see the tulips and daffies. Last year I planted a ring of tulips around our campfire pit. Today I saw pigeons carry twigs from our house roof to the silo to make nests. Can't wait for more signs of spring!! Hope you get to spend time with your grandkids in the sun before your next chemo. CRFB!!

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

Hi Linda,

Sorry about the delay but happy about your CA125. So if all goes well you will have final chemo on Mar 23, CT scan 2 weeks later, and then radiation will start (when?) - is that correct?

It must have felt good to hear the news that dr. considers you to be in remission now!!! awesome. Rest up, Linda, and visualize your marrow manufacturing lots of platelets and white cells - do this visualization 3 times a day. That seemed to help me!!

Prayers and love, Mary Ann

deanna14
Posts: 734
Joined: Oct 2008

Linda, that CA125 is awesome! So happy for you about that, you are very obviously responding appropriatly to the chemo, despite the delays. Just think of it as a week longer break with a full tank of gas! lol. You should be feeling more energetic this week with those new blood cells. Sorry you had such and long day today, but by this time next week you will be finished with your chemo! Do you know what the number is that determines if you get a blood transfusion? I'm a little concerned about my treatment next Monday. I am easily becoming short of breath and hearing the whoosh whoosh in my ears. I'm very lethargic and could sleep all the time! I'm eating lots of leafy greens and red meat, but I suspect that my hgb is low. I started my last treatment with a hgb of 10.5... we'll see on Monday.
Anyway, girl you just enjoy your extra week off!

We went fishing today, it was 68 degrees. Life is good!

Love and hugs to all. Hang in there Linda

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

I was given 1 unit of blood with my 8.6 RBC following Round 4; and 2 units when it was 8.3 in anticipation of Round 6. I don't know what the hard-and-fast rule is. My oncologist said he would have allowed me to get my chemo yesterday since it was my last round with that 8.3 RBC, but the 27 on the platelets was just way too low for me to safely get my chemo infusion. (And if he had let me have the chemo yesterday, he would have had me come in a week from now for a blood transfusion AFTER the chemo just to keep me safe as my counts drop further. So I'd have had a blood transfusion for this round either way; it was just a matter of the platelets that set the order of what had to come first).

It is in the 50's here and I spent an hour outside raking the heavy wet leaves out of my flower beds and spreading them across the grass to dry. It's supposed to be nice again tomorrow, and I will wear a mask (because of the leaf mold) and start vacuum/shredding the leaves tomorrow if they are dried out enough. The new transfused blood has really eliminated that awful heart-pounding that is so scary and makes me afraid to exert myself. It's so GOOD to be outside again without the bitter cold!

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Sorry to hear that you didn't get your last chemo, but as I was told low blood counts can cause so many problems so it's a good thing for you to have. I was complaining about four hours with 2 pints of blood you had a heck of a long day there young lady. I was told that the transfusion does bring your blood count up but time is what does it for the platelets and red blood from the bone marrow. Have you heard this?
So happy for the CA-125 counts and I like the thinking of your doctor.

Rest tonight and by next week you will have that last treatment.
Like you said each persons cancer is weird, I had radiation in the pelvic and I still had a recurrence a year later in my lungs so who knows what is in store for us. Here's to you that every treatment will put you in remission. Here's to all of us.

It's still raining in Oregon. lol
Sharon

cookie1948
Posts: 79
Joined: Feb 2009

Linda,
I am glad you got your 2 units of blood and hopefully the last chemo will be the 23rd for you as planned!! I was told that the normal range for ca125 is 0-30. Is that what you were told or any of you? My mom's was 15 before the hysterectomy.
I wish you luck, and hope you get lots of rest so you will feel stronger for your last chemo treatment. Do most people get chemo and radiation since this type of cancer is so aggressive? Are you able to eat or do u not have an appetite?
Keep strong and hope you feel better soon and get to spend some time with the grandkids. They'll always make you smile!!
God Bless,
Cookie :)
My mom is really tired today, i think it's all hitting her today. I was told to look at her incision as the staples do not come out now until march 25th. It seems pretty red, but i they said that's normal as long as it doesn't get any worse.

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

Linda,

My rad. oncologist explained that this cancer tends to recur in the vaginal cuff area first. Also, I understand that once you get radiation you can not get it again in the same area. So since you are in remission maybe they don't want to push radiation in case you do recur. You also need to have your immune system to fight and keep healthy!

And as everyone keeps telling me we are all test subjects to doctors that's why they call it practicing medicine!

Keep your mind at ease, stress and worry is the worst. You and everyone here are in my prayers.

MIND, BODY AND SOUL!

Hugs

Ro10's picture
Ro10
Posts: 1419
Joined: Jan 2009

I am sure you feel better after your blood today though. Hope it picks you up enough so you can get your last chemo next week. That will be some celebration to have after chemo is completed. The CA 125 news is great. That is surpising news about not needing the external radiation. The onocologist told me that becuase the pelvic bones are so big and that is where blood cells are produced, my blood count could lower. That may be why they do not want to give the pelvic radiation at this time. The radiation onocologist should be able to answer your questions and concerns. That is great to be in remission at this time. I am so happy for you. I had all my information faxed to Illinois, so I am waiting to here what my plan will be.

Take care and hope you still have some spring in Pennsylvania. HUGS to you.

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