prayformymama

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  • February 28, 2017 at 4:46 am in reply to: Treatment Has Begun // Week 1 #93402
    prayformymama
    Member

    Lainy, Gavin and Ben,

    Thank you all for your comments! Much appreciated and plan on looking into Keyrtuda a bit more.

    UPDATE:

    Today was my mother’s first official treatment of the FOLFOX. Other than the hospital taking an extra 2-3 hours to get the treatment itself it was a good day for my mom and all of us. We’re praying that this mix of treatment will be one that her body can handle to help shrink the tumors. Thanks as always to all of you for your support. This site really has been a life vest for myself and my ability to cope with such a tough condition.

    I’ll make sure to keep you posted with the progress. Her pump will come out on Wednesday.
    Thanks again!
    Joe

    February 23, 2017 at 8:44 pm in reply to: Treatment Has Begun // Week 1 #93396
    prayformymama
    Member

    UPDATE:

    My mom was scheduled for her first round of the new treatment of FOLFOX today but here platelets were only at 68 which is too low to administer the treatment. I find this odd since she has had chemo in weeks…..instead she got a blood transfusion and her platelets actually went down again after the transfusion. I’ve tried to get her to eat foods that are best for naturally producing platelets but she just doesn’t have the appetite for it. I’m hoping for miracles here and starting to get very nervous.

    I was also going to post a note on the discussion board of the American Cancer Society to spread the word as best as I can as I feel like I’m running out of options. If anyone has any other suggestions I’m all ears at this point.

    Thanks again for all your continued support. It means the world to my mother, me and family.
    Joe

    February 21, 2017 at 5:30 am in reply to: Treatment Has Begun // Week 1 #93394
    prayformymama
    Member

    UPDATE:

    We’re heading to the doctor tomorrow to discuss this next round of treatment

    The FOLFOX regimen is comprised of

    FOL – folinic acid (leucovorin) which is not a chemo drug

    F – fluorouracil (also known as 5FU)

    OX – oxaliplatin

    I’m making a list of questions for the doctor before we begin this. Does anyone have any questions they think I should ask during the visit? I’m assuming I have most on my current list but would love to hear your thoughts prior to make sure I’m not leaving anything out.
    Thanks as always!!
    Joe

    February 13, 2017 at 11:11 pm in reply to: Treatment Has Begun // Week 1 #93389
    prayformymama
    Member

    UPDATE:

    Very Unhappy day….wish I had better news to report to everyone…..a call from the doctor confirmed that the GEM/CIS hasn’t worked…..we’re all upset, frustrated and saddened that this treatment hasn’t helped with my mother and her CC. Her liver is now showing a couple additional abnormal growths and the lesion on her skull has increased in size as well. The doctor has suggested starting a new combination of treatment called: Folfox Oxaliplatin 5 FU

    We’re all saddened and hope that if anyone here has some feedback on these next steps or has had experience with this Folfox Oxaliplatin 5 FU treatment it would be greatly appreciated.

    As always thanks for all your compassion and support. We’re keeping the faith that there is something that could help my mother.
    Thank you
    Joe

    February 5, 2017 at 10:01 pm in reply to: Treatment Has Begun // Week 1 #93387
    prayformymama
    Member

    UPDATE:

    Hope you’re all enjoying your super bowl sunday.

    Monday my mom will have blood drawn for an update on her counts as she wasn’t given chemo last week because of how low they were. We are still scheduled to have the CT scan of both her abdomen, chest and brain Friday with a report next Tuesday. Very nervous about the results since I know if the chemo isn’t doing anything my mom will go into major depression.

    Not that I’m not thinking positively but in staying ahead of the news I ask if anyone else had experience where their blood didn’t handle the Gem/Cis well and a mix of the chemo cocktail was adjusted and worked? I only say this in preparation and again staying ahead of any adversity if in fact that will be the case.

    Thanks and as always thanks for all your support!
    Joe

    January 29, 2017 at 6:54 pm in reply to: Treatment Has Begun // Week 1 #93386
    prayformymama
    Member

    Hi Catherine,

    Yes, they are planning on scanning her brain as well to check on that pain which ultimately makes me the most nervous.

    Thank you for your support!
    Much love
    Joe

    January 28, 2017 at 4:58 pm in reply to: Treatment Has Begun // Week 1 #93384
    prayformymama
    Member

    UPDATE:

    My mom received her 1st round of her 3rd cycle of chemo Tuesday and her blood work yesterday (Friday) was actually very good. Although every time she does chemo the first round seems to go very well it is always right after the second round that the chemo and her blood goes to hell. Friday her blood work was 151 for platelets, 9.8 HGB and 6.8 WBC which are good numbers for her and what she has been through but obviously still not ideal.

    The doctor has her planned for her second round of the 3rd cycle this coming Tuesday and then a CT scan the following week. Which all sounds like good news.

    Unfortunately, this week my mom said she was suffering from what felt like a bump on her head…it just so happens to be the same spot they found the mets on her skull and now I’m fearful that during the scan we’re going to see a whole other mess of news that will inevitably put us in a world of hurt and dejectedness.

    Thanks as always for all your love and compassion. My mother, family and I can’t thank you all enough for the support!
    Joe

    January 22, 2017 at 9:23 pm in reply to: Treatment Has Begun // Week 1 #93381
    prayformymama
    Member

    UPDATE:

    Thank you all for the warm wishes and advice. It means the world to me, my family and most of all my mother. She had another doctor’s visit Friday and her platelets were up to 95 so we are moving forward with another round of chemo on Tuesday.

    This will be the 5th time she’s received chemo and will start her 3rd cycle. To answer questions about a less harsh amount this was done on the 2nd cycle after she was hospitalized during the 1st cycle. They cut the chemo in half or potentially even less than half to be safe.

    Radiation hasn’t been suggested since she shows mets in her lymph nodes and a small lesion on her skull. Also why surgery wasn’t an option either. As of now the chemo is for palliative reasons although pain and time in the hospital getting transfusions/platelets is almost one and the same.

    I plan on sitting down with her doctor on next Friday to discuss how this 3rd cycle goes and what he suggestions moving forward. Is it normal to keep this regiment:

    – Chemo 1 week
    – Chemo 1 week
    – Platelets and Blood Work 3-4 days as out patient
    Back to Chemo?

    I would assume the doctor wants to at least see if the chemo is working and get 3 cycles under her belt to do a CT scan.

    All is very hard to stomach as we gain some hope with chemo but we lose time in the hospital and frustration of all that comes with it….I know that accepting that it might be best not to do chemo will be too hard for my mom or any of us to accept. Here’s to hoping that she can handle this cycle so we can get a good idea if in fact the chemo is doing its job.

    Thanks to everyone’s love and support. This website and your words have been my saving grace during this whole experience and hope I can find the time to come out to Salt Lake City
    Much love to all of you!
    Joe

    January 14, 2017 at 3:47 pm in reply to: Treatment Has Begun // Week 1 #93376
    prayformymama
    Member

    UPDATE:

    Given her low platelet numbers they have now given her about 4-5 bags of platelets to replenish. Luckily she’s been an out patient during this time but her numbers seem to be sitting at 17 with all the bags she’s been given….this seems to be a trend for her given the Gem/Cis. She’s heading back into the hospital again for another bag now which will be 3 days in a row for her….

    Is this common? Should I be worried that her body/blood can’t handle the chemo?
    Any insight would be great. Thank you as always!
    Joe

    January 13, 2017 at 3:36 am in reply to: Treatment Has Begun // Week 1 #93375
    prayformymama
    Member

    Thank you Marion. Problem is the already cut the dose in half since the first round of chemo put her in the hospital.

    UPDATE:

    Today she was back in the hospital and her platelets got down as low as 12…she’s going back tomorrow for another bag of platelets. Starting to think her body can’t handle chemo at all….is this much blood work and hospital/doctor time outside chemo within the first 1-2 months of treatment common?

    Thanks
    Joe

    January 11, 2017 at 3:32 pm in reply to: Treatment Has Begun // Week 1 #93372
    prayformymama
    Member

    UPDATE:

    My mother had blood work done yesterday to check her levels and as I had feared they’ve gone down to dangerously low levels once again. Her platelets which read 126 on Dec 30th went down to 68 on Jan 6th is now down to 16 as of Jan 10th. I’m really starting to fear that her body can’t handle the chemo and that we’ll be left with little to no options. Her spirits are low but I keep reminding her that although the numbers read the way they do if she feels good and mostly normal that, that is really the only thing that matters. She’s going into the hospital today for more blood work and potentially a transfusion.

    Any suggestions or questions I should be asking the doctor?

    Thanks as always for all your support and feedback. My mother and I appreciate it more than ever!
    Joe

    January 8, 2017 at 8:18 pm in reply to: Treatment Has Begun // Week 1 #93370
    prayformymama
    Member

    UPDATE:

    My mother had a follow up with the doctor on Friday and as they suspected her blood levels had gone down. Platelets were 126 the previous Friday and this Friday down half of that to 68. Insurance has yet to approve the red blood cell shot procrit and until she’s checked on again Tuesday they won’t schedule for more chemo….all of this has kept my mother’s spirits a bit shaky and have urged the doctor not to emphasize so much the numbers themselves but more so her comfort physically. On a positive note he did mention that the test they ran that measures the level of secretions given off by the tumors was shown to be reduced by 20% overall which makes us hopeful that the chemo is doing its job.

    Other than that I’ve got my mother on a dab of pure CBD which we put on a cracker along with a CBD vape pen in hopes that it also has a positive impact on the cancerous cells.

    We’ll know more Tuesday when she has another blood test taken. Thanks as always for all your love and support. I look forward to potentially seeing some of you at the forum next month in Salt Lake as I plan to come ready to chat CC.
    Much love
    Joe

    January 2, 2017 at 4:45 pm in reply to: Treatment Has Begun // Week 1 #93369
    prayformymama
    Member

    Thanks Lainy. I do alright in the kitchen, good enough to keep the healthy food on the table.

    UPDATE:

    My mother has begun her second cycle of chemo today which is just the (gem) alone. They did blood work just now and her platelets dropped in half since Friday…has me very nervous since that was the reason we ended up in the ICU for a week last time post this (gem) only chemo. The doctor said they plan to push forward with it and have cut the chemo dosage in half if not more to assure no problems arise. I sure hope we don’t end up in the hospital again with the same problem, that setback was hard enough for my mom I can’t imagine what her spirits will be like if she haste do it again.

    Note: Apparently my mother has particular antibodies that aren’t helping with the platelets, or so they say which forced them to get a particular blood type shipped to the hospital when she was in the ICU for a week….

    Here’s to hoping for the best with this round of chemo. It has me very scared that if her body doesn’t take to this again that we might be left with little to no options…Has anyone heard of this happening and if so has any resources or tips on how to combat it?
    Thanks so much for all your thoughts and prayers.
    Much love!
    Joe

    January 2, 2017 at 4:30 pm in reply to: Diagnosed with IHCC at 29-years-old #93669
    prayformymama
    Member

    April, we are all here for you and praying for continued success. I too am new to all of this as my 61 year old mother was diagnosed with IHCC just 2 months ago and has flipped our lives upside down. Keep the positive energy going as that is most important! Let us know if you need anything. Regardless we are here with you and sending our prayers.
    Joe

    December 31, 2016 at 4:02 am in reply to: Treatment Has Begun // Week 1 #93367
    prayformymama
    Member

    UPDATE:

    Today we had a DR visit to check blood levels post our second go at chemo and it was a good visit. Platelets were at 278, WBC were normal but hemoglobin was at 7.8. Regardless of them being a tad lower than where they’d like we’re continuing with chemo scheduled for Monday but the doctor is cutting the dosage in half to insure that my mom doesn’t end up back in the hospital for a week. We’re also waiting on insurance to OK the red blood cell shot, as of now they haven’t but after today’s reading I’m hoping they will. The doctor is also doing a blood test to specifically look at the tumors to see what kind of activity is going on since we probably won’t be doing a CT scan for another 4 weeks.

    Overall sprites are high, cooking my mom anything with iron in it to help with her red blood cells. Eggs, Greens, Nuts Etc

    More updates to come post chemo Monday. Thanks again for all your support and love. It means the world to us!
    Joe

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