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 20

Thread: New pain

  1. #1

    New pain

    Hi my name is Steve. I am retired and have been happily married to the same great gal for 36 years. We have four children and one grandbaby. I am a Veteran of the Vietnam War and the War on Cancer. I have had Cancer for about 15 years. I have beat it every time. My problem is it comes back for more. I currently have SCC as my name suggests. All my Cancer started with Skin. Basil first. It has morphed now and infecting Muscle, Nerves, Fatty Tissue, and just about anything it comes into contact with. I have undergone about 12 MOHS Surgeries, Same amount of Radiation Sessions, and two Major Surgeries. The Surgeries were in August and November of last year. I had a Tumor that was first removed by MOHS and skin grafted. Then treated with Radiation. It came back both times. I then had the first Surgery but after it had spread pretty bad. They removed the right side of my face from my Temple area down to my Adams Apple. They took everything out. Lymph Nodes, Saliva Gland, Nerves Muscle, and inner ear. They used my left Thigh to rebuild this area. Two weeks after that Surgery it appeared again and in the same areas. They opened me up again and removed everything and repaired the area with my right Thigh. Before putting me back together they laced the area with Radioactive Seeds to kill anything they might miss. Three weeks latter it was back. I am having these Surgeries done at Jefferson Memorial Hospital in Philadelphia. I was there today to talk to the Surgeons and this is my next plan of attack. To take anymore off with removal they would have to take everything on the right side of my face. The option they gave me was a study. They infuse me with a Chemo Med that contains an element that attaches itself to the Cancer Cells. It is highly sensitive to light. After the injection I go home and return the next day. They take me into an OR and while under they shoot the Tumors with a Laser. So I get the Chemo killing it and the Laser also. I spend a day in the hospital then return home. At this point it is my only option other than loosing the entire face which hasn't worked yet. I am in constant pain as this Cancer is very aggressive. A Tumor can appear overnight. In the second surgery they took a lot of my head up and around the Ear. I am a sight. I try not to scare the kids when at the market that's how bad I look. The right side of my face is paralyzed as they took the nerves and am deaf because they remover the inner ear. I have no saliva. You hand me a Cracker, I chew it up and hand you back a handful of Flour. I have had Radiation in the area so many times the taste buds are gone. Yes I am a mess LOL.

    I am well taken care of and with medication can get the Pain to the point were I can function. My only regret is the pain my family endures. Sometimes I wish it was all over so they could go on and heal and live their lives. It is getting very hard to hide it from my wife. Sometimes she cries herself to sleep. No medication can stop that pain.

    So I am here to talk. If I can help anyone please just ask. I have plenty of experience.

  2. #2

    New pain

    I woke Sunday morning with a pain in my left Hip and right shoulder. I had walked quite a bit on Saturday so was not too concerned. It is still hurting now 2 days latter with no sign of stopping. It hurts to walk. I am going over to the Hospital today to talk with my Doctor. What test should I get done to see if this is my Cancer spreading? I am scheduled for treatment next Tuesday and if this is Cancer a new plan needs to be taken as it is not contained anymore in one area. I don't feel any lumps just pain when I stand or touch the area. Can they see it with a Ultrasound? That would be the fastest and easiest to do on short notice.


    Steve

  3. #3
    Super Moderator Top User
    Join Date
    Dec 2011
    Posts
    4,890
    It's good that you're acting on your concerns. But don't put the cart before the horse. The only purpose worry serves is to get us to take action. As you've taken action in arranging to see your doctor today, there's no further purpose for worry.

    By the way, if you're already diagnosed with cancer, you could post in the forum labeled for the kind of cancer you have... that way your post is more likely to catch the eye of those familiar with the particular type of situation you're dealing with.

  4. #4
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Posts
    9,826
    Blog Entries
    2
    Hi Steve
    I totally understand your concerns and you have done the right thing in going to the doctor. An ultrasound may be useful to you as they are pretty good these days. Keep at the doctors until you get the answer as to why this is happening. As we like to say around here the squeaky wheel gets all the oil.
    Best wishes to you and good luck.
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  5. #5
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,054
    If you have active cancer, then it must be under surveillance, right? But, married for 36 years, 'Nam vet - that would mean that your age starts with a "6" - pain is part of the game, especially for veterans. I think it might be just noise, but one way to find out.
    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.

    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.

  6. #6
    Quote Originally Posted by po18guy View Post
    If you have active cancer, then it must be under surveillance, right? But, married for 36 years, 'Nam vet - that would mean that your age starts with a "6" - pain is part of the game, especially for veterans. I think it might be just noise, but one way to find out.

    Yes 67 March 4th. Turned out it was nothing but "Age Pain" like you said. That's a load of my mind. Well Tuesday I go for the Chemo then back in on Wed. for the operation. An overnight stay and I come home and wait to see if it worked. I hope it works as I am getting tired. I don't have the fight left in me I had as a younger guy.

    I tried the Marijuana. I hated it. My mind was going eight different ways at one time. All the little things turned into (in my mind) big things. I did what they said and only took one puff. I don't see how people get pleasure from smoking it. It was ground up and I smoked it from a Pipe. That was the only form they had except for the actual flower not ground up. Another dispensary has other forms like powder for baking and the Oil without the THC. I am going to get the Oil.

    Wish me luck as this is my last option. If this doesn't work I don't know what I am going to do. As part of the study I can receive the treatment four times. But I really hope it works the first time. I will be going through all the Chemo side effects like loss of hair, fatigue, nausea, etc. But I will get it all right away and it will get better with time as the Chemo wears off.

    I will keep you all posted and thank you for replying. People that haven't gone through this just don't understand.

  7. #7
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Posts
    9,826
    Blog Entries
    2
    Hi

    The psycho active effects do tend to wear off but you have to smoke a lot to get to that stage.

    The best of luck with the up coming treatments Steve... you have suffered more than enough so I hope chemo means no more surgery.

    I had a workmate who went through this so I have some understanding of what you are going through. For what it is worth I think you are incredibly brave...I would not be able to do it.

    Once again good luck....fingers crossed for some good news
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
    Thank you for the well wishes CM. Today is the big day. I visit a hunting and fishing site quite often. It is called new jersey woods and water. I run a few programs for the kids from there. Range day and hunting outings. I also run a few shooting events for the adults. I do a lot of work promoting the shooting sport to new hunters also.

    Well last night there was a knock on my Door. It was the owner of the web sight and two members. They all know of my ongoing condition and I thought they just stopped by to wish me luck. Well they did wish me luck but also had taken up a donation for me through the web sight. The owner handed me an envelope full of money. I have not been able to work in a long time and this money is a real help right now as the bills pile up. There are good people out there. Now I can concentrate on the treatments and not have to worry about trouble at home.

    You know for awhile there I didn't think I was going to make it. Two major surgeries and it is back that fast. This is a last resort for me but for some reason I think this is going to be the end of my Cancer. I have been sick for so long I forgot what it feels like to not be sick.

  9. #9
    Well things did not go good yesterday. I was started on the infusion of this experimental Chemo at 8:15am....... by 8:20am I was fighting for my life. They stopped the meds and started Steroids to try to stop the bad reaction. My Blood pressure skyrocketed as my heart rate went past 140bpm. I turned red all over and swelled up like the Doughboy. I started to shake bad and my breathing was very short and hard. When I could no longer speak the Code Blue was issued. In came the Emergency Team ripping clothes off and attaching machines. I looked at my Wife and she said to me "Fight baby fight". So I fought. They got the shock pads on me and kept trying to stop it with steroids and other meds. Then out came the big needle they stick in your heart full of Adrenalin. They gave me the whole dose. I tried to stop shaking and was able to stop and go. I got my breathing to go longer. I knew if I shut my eyes I was a goner. I concentrated on breathing and shaking and started to be able to control it more. In a few more minutes I knew I was going to make it as I could speak. I called my wife.

    I hope they learned a valuable lesson here. They knew I was allergic to contrast in Cat Scans and gave me this test anyway saying the steroids would stop any reaction. If I wasn't a strong man I would have ben dead. Someone weaker would not have had a chance. I am done with Trials and anyone here would take this advise to heart. Don't do it unless there is absolutely nothing else to do.

  10. #10
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,054
    Whew! A close one! Yet, reaction to contrast does not translate directly to any other reaction. Is there a possibility that the infusion can be greatly slowed so as to avoid this?
    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.

    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.

 

Similar Threads

  1. Neulasta Pain versus Neupogen Pain
    By BeanDip in forum Cancer Pain
    Replies: 3
    Last Post: 07-07-2017, 04:54 PM
  2. Port and shoulder pain?/5FU and shoulder pain??
    By MaureenR in forum Pancreatic Cancer Forum
    Replies: 4
    Last Post: 03-24-2013, 03:21 AM
  3. Replies: 0
    Last Post: 10-14-2010, 01:29 AM
  4. cancer pain vs other pain
    By rwj in forum Cancer Pain
    Replies: 2
    Last Post: 06-09-2006, 08:56 AM

Posting Permissions

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