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 14 of 14 FirstFirst ... 4121314
Results 131 to 140 of 140

Thread: Well O.K. here I go with chemo

  1. #131
    Senior User
    Join Date
    Nov 2016
    Posts
    172
    Quote Originally Posted by sacha39 View Post
    Thanks so much Jango. Yes I am VERY good at worrying also... But with the help of people on this site I have managed to calm down a bit. Best wishes to you and your father,

    Marie

    Hi everyone,

    I had a appointment with my hémato-onc 10 days ago. He felt the lumps and said he was pretty sure they weren't lymphoma. He told me lymphoma nodes move, they might be hard, but they move. So I asked him what they could be and he told me what simon-h had told me in his post: that my body is recovering from chemo and all sorts of weird stuff can happen. It could be a tiny hair wanting to come out but since the "terrain" isn't what it usually is, there could be some swelling. The really hard lump could be a bone suture. Still, just to make sure, I have an appointment for a CAT scan in two weeks then I see him on August 6th.

    He was very kind and asked me if I trusted him: "I have 25 years of experience and I'm telling you these lumps aren't lymphoma.". I do trust him but I trust cancer even more. It certainly has proven itself. But he was very kind, told me that if I had any other worries to ask for an appointment and he''d see me as fast as he could. He also told me that early relapses are often treated with new drugs that actually work and they aren't as threatening as it sounds.

    So, I'm a little calmer with a touch of scanxiety of course but I'll survive until the 6th of August. Thanks for listening ands have a great weekend,

    Marie

  2. #132
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,557

    Now I'm worrying...about YOU!

    Not really, but you do know why the doctor asked if you trusted?

    Look up Cognitive Behavioral Therapy. Ahhhhhh...what a relief!
    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 TREC (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 measureable - 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.
    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.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, treatment with Imbruvica (Ibrutinib) or clinical trial of Interleukin2 being considered.

    To date: 1 cancer, relapse, 2 cancers, then 3 cancers simultaneously, 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

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

  3. #133
    Senior User
    Join Date
    Nov 2016
    Posts
    172

    Thumbs up

    Quote Originally Posted by po18guy View Post
    Not really, but you do know why the doctor asked if you trusted?

    Look up Cognitive Behavioral Therapy. Ahhhhhh...what a relief!

    Hi Po,

    I've been looking up Cognitive Behavioral Therapy for quite a while now, and it has helped with just about everything… but cancer. But I'll keep going - I do believe life is a growth process - and this just might be the next challenge.

    By the way, I have purchased a small notebook where I list all the worries I've been having since the beginning of this bloody illness and yes I've overdone the anxiety bit… a bit! I've listed 19 anxiety attacks, only 4 of which have actually happened. Hmmm….

    Have a great weekend,

    Marie
    -

  4. #134
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,557
    Human mortality is running constant at 100%. What do we do about that? We come to grips with it. There are numerous ways of doing that.

  5. #135
    Senior User
    Join Date
    Nov 2016
    Posts
    172
    Quote Originally Posted by po18guy View Post
    Human mortality is running constant at 100%. What do we do about that? We come to grips with it. There are numerous ways of doing that.

    That's a TALL order!. I've been trying to come to grips with it since I actually realized I was going to die at around 17 years old. Before that I knew I was going to die. But I realized I was going to die at 17. Since then I've been interested in near death experiences, after death events, past lives etc. but I'm not convinced at all. Hmmm...

  6. #136
    Experienced User
    Join Date
    Oct 2013
    Posts
    61
    since you posted about your head lumps I've had a couple some up on my own head. Had to very much take my own advice and not freak out, a couple of weeks later and while not gone they are very much smaller so panic over!

    I do somethings think that oncologists can get a bit blase about cancer, after all they have seen things like this hundreds of times so get used to it, I think they perhaps can occasionally forget that for many of us this is our first time going through it so don't really know what is happening or what to expect.
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  7. #137
    Senior User
    Join Date
    Nov 2016
    Posts
    172

    Thumbs up

    Quote Originally Posted by simon_h View Post
    since you posted about your head lumps I've had a couple some up on my own head. Had to very much take my own advice and not freak out, a couple of weeks later and while not gone they are very much smaller so panic over!

    I do somethings think that oncologists can get a bit blase about cancer, after all they have seen things like this hundreds of times so get used to it, I think they perhaps can occasionally forget that for many of us this is our first time going through it so don't really know what is happening or what to expect.

    Hi Simon,

    I think the "blasé" attitude might be that they are trying to protect themselves from emotional exhaustion. Each and every patient they have is on pins and needles and afraid to die. If they had to be in the same emotional state we are… most of the time… with each patient, they would be exhausted within days.

    But my oncologist was very encouraging. He told me "the sky has fallen on your head once, so now you are hypervigilant and every time you have a lump, a bump or anything else that seems out of the ordinary you will be hyper reactive." He also told me what I've seen on this forum many times: "Don't panic"... O.K. so I'll try.


    Have a great day and I hope your head lumps disappear completely very soon,

    Marie

  8. #138
    Senior User
    Join Date
    Nov 2016
    Posts
    172

    Almost...

    Quote Originally Posted by sacha39 View Post
    Hi Simon,

    I think the "blasé" attitude might be that they are trying to protect themselves from emotional exhaustion. Each and every patient they have is on pins and needles and afraid to die. If they had to be in the same emotional state we are… most of the time… with each patient, they would be exhausted within days.

    But my oncologist was very encouraging. He told me "the sky has fallen on your head once, so now you are hypervigilant and every time you have a lump, a bump or anything else that seems out of the ordinary you will be hyper reactive." He also told me what I've seen on this forum many times: "Don't panic"... O.K. so I'll try.


    Have a great day and I hope your head lumps disappear completely very soon,

    Marie
    Had the results of an MRI today saying that after chemo the lump under my eye was almost completely gone. Almost???? Does that mean that there is a little left? Yes, says the ophtalmologist. I had shown what was left of the lump to my oncologist and he had assured me it wasn't lymphoma. It could be scar tissue etc. etc. But it is lymphoma... Hmmm... Here we go again...

  9. #139
    Experienced User
    Join Date
    Oct 2013
    Posts
    61
    sometimes is takes the body a little while to breakdown the dead tissue and make it all go away.
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  10. #140
    Senior User
    Join Date
    Nov 2016
    Posts
    172
    Quote Originally Posted by simon_h View Post
    sometimes is takes the body a little while to breakdown the dead tissue and make it all go away.
    Thanks Simon. I really hope so.

 

Similar Threads

  1. Well it is back and here we go again
    By Rokbern in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 228
    Last Post: 08-17-2018, 01:41 PM
  2. Replies: 6
    Last Post: 10-17-2014, 10:06 AM
  3. Hey everybody, I'm new here as well.
    By jordyb67 in forum Brain Tumors Forum
    Replies: 3
    Last Post: 09-19-2012, 05:42 AM
  4. Well, here I am
    By dennper in forum Colon Cancer and Rectal Cancer Forum
    Replies: 10
    Last Post: 04-10-2012, 03:53 AM
  5. 2nd chemo went well
    By scooter60 in forum Lung Cancer Forum
    Replies: 3
    Last Post: 01-21-2012, 12:19 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
  •