First post-radiation MRI, low blood counts

connsteele
connsteele Member Posts: 232
in Brain Cancer #1
We got the results of our son's first post-radiation MRI yesterday (age 34, dx inoperable GBM 4/18/11). Since it's only been three weeks since he finished, we got the expected spiel: "it's a mixed bag. Some areas show shrinkage, but there are other areas showing flares/hot spots. Can't say if they indicate new tumor growth or effects of radiation. It could take another month to really tell." Makes me wonder: so if it's so soon after radiation, why didn't the doc wait another week or two? Of course, we were antsy to see MRI results. But the biggest surprise from yesterday is that his blood counts have suddenly taken a nose dive. His doc doesn't understand why that all during is 28 day Temodar, his counts were fine. Even one week later. Week two he had to have a platelet transfusion, and now, he's critically low in platelets, white cells, and neutrophils. She said this isn't typical. We have another blood draw Friday. So now, he's the Boy in the Bubble. Our son was due to start the 5 day/month Temodar protocol next week, but the doc said she can't put him on it until his counts are better. She said sometimes, it can take weeks or months for blood counts to get back to safe numbers. So, during that time, no treatment. That's scary. Anyone else have this experience?

Comments

  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #2
    low counts
    Yes we were there too.We had to start the first five day temadar late, and now the second five days was suppose to start a week ago Monday.
    My sister is in the hospital with blood clots now. Im getting really scared with all these delays. Now some doctor walked in her room today and she asked him went she was going to start treatment and he said you arent going to be getting any. Mine you this was a general doctor not an oncol doc. I dont know why he would say that. Im hoping that he doesnt know what he is talking about. I tried to get her to call the oncol. but she wouldnt. She is so scared....
  • annstillhere
    annstillhere Member Posts: 7
    #3
    that is scary for me and all
    that is scary for me and all of us looking to move forward with good news. talk aout a faith journey! I just want to stay well to attend my daughters wedding in CA.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #4
    4theloveofmysis said:

    low counts
    Yes we were there too.We had to start the first five day temadar late, and now the second five days was suppose to start a week ago Monday.
    My sister is in the hospital with blood clots now. Im getting really scared with all these delays. Now some doctor walked in her room today and she asked him went she was going to start treatment and he said you arent going to be getting any. Mine you this was a general doctor not an oncol doc. I dont know why he would say that. Im hoping that he doesnt know what he is talking about. I tried to get her to call the oncol. but she wouldnt. She is so scared....

    low counts
    Just wanted to add that the counts did come up.Once the wbc's came up then the platlet started coming up. But she got an infection and all the antibiotics they gave her lowered them again. After the first five day temodar they stayed up. Watch his temp which im sure the doctor told you. Infection will drop them.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #5
    annstillhere said:

    that is scary for me and all
    that is scary for me and all of us looking to move forward with good news. talk aout a faith journey! I just want to stay well to attend my daughters wedding in CA.

    Ann
    Are you finished with radiation yet? When is the wedding? Wishing and praying that all goes well for you.
  • connsteele
    connsteele Member Posts: 232
    #6
    4theloveofmysis said:

    low counts
    Yes we were there too.We had to start the first five day temadar late, and now the second five days was suppose to start a week ago Monday.
    My sister is in the hospital with blood clots now. Im getting really scared with all these delays. Now some doctor walked in her room today and she asked him went she was going to start treatment and he said you arent going to be getting any. Mine you this was a general doctor not an oncol doc. I dont know why he would say that. Im hoping that he doesnt know what he is talking about. I tried to get her to call the oncol. but she wouldnt. She is so scared....

    docs just showing up in the hospital room
    The experience with your sis and the GP brings up something that really bothers me about hospital stays: docs who have not been involved previously, just showing up in the hospital room. I don't understand the process. When our son was in the hospital, docs whom we didn't know, and would probably never see again, would just show up in the room. They all ask the same questions, the same cursory neuro exam. Give opinions or info that often conflicted with other docs stopping in. Then, they leave, we never see them again, but later get a bill. As in-patients, don't we have a choice of which docs get involved? Ask the purpose this doc's visit? What's the bill? Gheesh.
  • connsteele
    connsteele Member Posts: 232
    #7
    annstillhere said:

    that is scary for me and all
    that is scary for me and all of us looking to move forward with good news. talk aout a faith journey! I just want to stay well to attend my daughters wedding in CA.

    keep the faith
    Miracles happen all the time. Keep visualizing your being at her wedding. You'll be there!
  • jules_korte
    jules_korte Member Posts: 3
    #8
    Some help for your son
    My 4 year old daughter is currently on her break from chemo. she just finished radiation and chemo the end of June. Our saving grace when her counts began to drop was Essiac Tea. It has done wonders for her like bringing her counts up and helping keep her well, even cleared up a nasty rash from the chemo and kept her hair from falling out at all during her 33 treatments of radiation. Check out herbalhealers.com

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