A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 2 12 LastLast
Results 1 to 10 of 12

Thread: Struggling with Chemo

  1. #1

    Struggling with Chemo

    My husband just had his 3rd round of chemo, pump came off yesterday. He has only been getting the 5 fu Not the oxaliplatin yet due to some nerve issues he developed after his colon resection. So far from the chemo he gets the typical nausea off and on and fatigue but the last 2 rounds he has started getting sick the day the pump comes on with it progressively getting worse. He has been feeling really sick more like flu like symptoms so bad where he says he can't do this anymore, not sure he means it but that is how he feels in the moment of feeling so sick, I hate seeing him like this. He is normally a very active guy and he is trying to stay busy and work. He works from home so he can rest when needed.
    Our real fear is if he is already feeling so horrible right now, when they add the oxaliplatin how much worse this will be, it's already a struggle with the 5fu. I guess my question is it normal to feel a generalized feeling of feeling just sick like the flu for a few days? He was also dizzy a few times the last couple of days as well, it didn't last long but it was 3 different occasions. Any thoughts on only doing the 5fu has anyone ever done that with stage 3?

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,491
    Our attitudes during treatment vary from superlative to abysmal. Trust the doctors. This is not an easy journey, but a necessary one.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    620
    Quote Originally Posted by worriedwife69 View Post
    My husband just had his 3rd round of chemo, pump came off yesterday. He has only been getting the 5 fu Not the oxaliplatin yet due to some nerve issues he developed after his colon resection. So far from the chemo he gets the typical nausea off and on and fatigue but the last 2 rounds he has started getting sick the day the pump comes on with it progressively getting worse. He has been feeling really sick more like flu like symptoms so bad where he says he can't do this anymore, not sure he means it but that is how he feels in the moment of feeling so sick, I hate seeing him like this. He is normally a very active guy and he is trying to stay busy and work. He works from home so he can rest when needed.
    Our real fear is if he is already feeling so horrible right now, when they add the oxaliplatin how much worse this will be, it's already a struggle with the 5fu. I guess my question is it normal to feel a generalized feeling of feeling just sick like the flu for a few days? He was also dizzy a few times the last couple of days as well, it didn't last long but it was 3 different occasions. Any thoughts on only doing the 5fu has anyone ever done that with stage 3?

    I hope things have evened out some for you both. This experience is truly a journey and each of us has had different reactions to the various treatments. I do recall saying to my wife after about six months of chemo/radiation, surgery and more chemo, I just want to feel good again. I know there was a powerful sense of just not feeling well, sort of the flu, but not, sort of a cold, but not... everything seemed more difficult during the treatment phase.

    Gradually, I began to feel better, it was very much incrementally, but better. I continued throughout my walking at the mall. That really helped me.

    I hope things improve for you, but not likely until you get this treatment behind you.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  4. #4
    Thank you Doug, He just got pump off a couple hours ago for his 5th treatment. This time he said it has been the worse of all chemo treatments thus far. He seems more nauseated this time with compazine and zofran not helping too much. He also says he feels "out of it". So far he is still only on the 5fu but Friday we have an appointment to talk about adding the oxaliplatin. We both are very worried about this one, he already has had some nerve issues plus he works in the garage for a living so the cold thing will be difficult. The last time he had chemo it seemed to go fairly well, it was probably one of the best he had. This one, not so much.
    Thanks again. I know things wont really get better until he is done, IF he doesn't stop chemo before that.

  5. #5
    Top User mojo's Avatar
    Join Date
    Apr 2010
    Posts
    2,388
    Hi my name is Sharon I was just wondering if they gave him IV anti-nausea medication before getting the chemo? Several of my friends are chemo nurses and they seem to give a lot of emend and Aloxi. My husband had 5FU and cpt 11 and leukovorin Back in 2002 with a stage III : Cancer. He had that for eight months. They gave him zofran and steroid . He said he felt like he had the flu and by the time he was done he was throwing up in the parking lot as we left. He also was working during five months of this chemo he was working 10 hours a day and five on Saturday. The second time he had cancer which was a relapse was eight years later and the anti-nausea medication they gave him along with steroid helped him quite a bit. He had chemotherapy from April 2010 through August 2011. Until the cancer took over. So possibly what Iím getting at is ask your chemo therapy people if there is something better he could have that could make his life a little happier and not so nauseous. I know Kenny hated the chemo the first time but because he did it we had eight more years together. And I know a lot of people have the rest of their life together too. So generally itís well worth going through a bad time to get to the good time. Just my thoughts I hope it helps.

  6. #6
    Thank you Sharon for your response, I'm so sorry your husband had to go through so much chemo. I"m glad he went through and you got the 8 years, I am praying he will continue. They give him an IV of zofran and they gave him dexamethasone the steroid however my husband has had bad results from steroids in the past so he doesn't the steroid. They give him zofran and compazine for nausea at home, however today we called because it was so bad they called in phenergan for him. This by far was the worst chemo, either it is because it just gets worse over time or maybe because the nurse didn't give him the saline while infusing the leukovorin? Normally they do but she couldn't get the machine to work so she just didn't give it to him I don't know if that would really make a difference or not.
    Today and yesterday he has had very severe stomach pains and again not sure if it's chemo related as he hasn't experienced this before. Thanks again for reaching out.

  7. #7
    Top User mojo's Avatar
    Join Date
    Apr 2010
    Posts
    2,388
    I’m sorry he is having such a rough time. I think the saline does make a difference in my opinion. Chemotherapy is quite dehydrating and that extra fluid always seems to help. I’m hoping they were find the right medication to help him with this rough time he’s going through. I’m glad you called, try to make a rapport with the chemo nurses and they will help you a lot. I’m praying for you both

  8. #8
    Thank you. I asked them about the saline, the MA didn't seem to think it makes a difference but I kind of think it does. Every time my husband gets a blood draw they tell him he's a little dehydrated but this time with none I think it made a difference. Not only is he struggling with the effects from chemo but also from the colon resection surgery he had, that has been a very difficult adjustment and I think that this chemo wreaked havoc on his digestive tract. Thanks again for your prayers, very much appreciated and for talking with me.

  9. #9
    Quote Originally Posted by worriedwife69 View Post
    Thank you. I asked them about the saline, the MA didn't seem to think it makes a difference but I kind of think it does. Every time my husband gets a blood draw they tell him he's a little dehydrated but this time with none I think it made a difference. Not only is he struggling with the effects from chemo but also from the colon resection surgery he had, that has been a very difficult adjustment and I think that this chemo wreaked havoc on his digestive tract. Thanks again for your prayers, very much appreciated and for talking with me.
    Well Tuesday my husband had his 6th chemo treatment so that means half way done. This time they added the oxaliplatin but only at 1/2 the dose since he has had the neuropathy issues from something else. Well all I can say is it has been really hard for him. He is so much more sick with only the half dose, he did not have any neuropathy yet but he has slept most of the last 3 days and nights, he has felt so sick more than just the flu. I can tell such a difference in his moods like he's not here, don't really know how to explain. He has said that he does not think he can do the oxaliplatin anymore, he said for sure not with a full dose. I understand if he chooses not to mostly because of the permanent neuropathy issues but man this is horrible. Any spouses out there that can give support watching their loved ones going through this, all the questions, fears they (we) have about it coming back ect? We have absolutely no support groups in our area which sucks.

  10. #10
    Experienced User
    Join Date
    Dec 2012
    Posts
    70
    Quote Originally Posted by worriedwife69 View Post
    Well Tuesday my husband had his 6th chemo treatment so that means half way done. This time they added the oxaliplatin but only at 1/2 the dose since he has had the neuropathy issues from something else. Well all I can say is it has been really hard for him. He is so much more sick with only the half dose, he did not have any neuropathy yet but he has slept most of the last 3 days and nights, he has felt so sick more than just the flu. I can tell such a difference in his moods like he's not here, don't really know how to explain. He has said that he does not think he can do the oxaliplatin anymore, he said for sure not with a full dose. I understand if he chooses not to mostly because of the permanent neuropathy issues but man this is horrible. Any spouses out there that can give support watching their loved ones going through this, all the questions, fears they (we) have about it coming back ect? We have absolutely no support groups in our area which sucks.
    I'm a little late to this. But to give you some perspective, the Oxali component of FOLFOX only accounts for a small percentage of the effectiveness of the treatment. The main drug that carries the bulk of the treatment is the 5FU. So if he has to stop taking Oxali because it's really making him miserable, it's not the end of the world. But all of this should be communicated to his doctor. Any symptoms, aches/pains, discomforts.....anything...needs to be communicated to his doctor so he/she can make adjustments as necessary. This can be in the form of different pre meds to changing the dosage of the chemo itself.

    For my situation, my doc used Emend and Ativan as my pre med nausea medications. The Ativan was helpful later as it knocked me out during the infusion at the clinic. I also found that taking my at home anti-nausea medications the day before going into the clinic was tremendous in how quickly I was able to recover from the infusion and how bad the nausea was during the treatment. Your husband may want to try this.

    I was also doing this inadvertently but found out it may have been beneficial. Fasting just before treatment and somewhat during has shown in some patients the ability to recover more quickly along with increasing the effectiveness of the chemo drugs. There have been some studies which have looked into this.

 

Similar Threads

  1. Forum newb struggling day to day....
    By DC42 in forum Coping and Support
    Replies: 17
    Last Post: 04-22-2009, 08:00 PM
  2. I'm new - an emotionally struggling caregiver
    By geolor85 in forum Pancreatic Cancer Forum
    Replies: 6
    Last Post: 12-06-2008, 10:50 AM
  3. Struggling with guilt
    By rainbow in forum Coping and Support
    Replies: 6
    Last Post: 10-11-2007, 02:11 AM
  4. New to site, struggling with treatment options
    By PI-Man in forum Prostate Cancer Forum
    Replies: 4
    Last Post: 05-09-2007, 02:22 PM
  5. Newbie here still struggling...
    By golje in forum Coping and Support
    Replies: 0
    Last Post: 01-22-2007, 02:11 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •