PORTACATH INSTALLED

COBRA666
COBRA666 Member Posts: 2,401 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Had my porta cath put in today and a little sore right now.They said it will be sore for a few days. Thought I would post this for those that are waiting to have theirs put in. It is a little apprehensive waiting , but its not that bad at all. Start r-chop next week and thats where the praying really starts. I see a lot of mixed results from therapy with the chemo. I have follicular stage 4. I hear there are very good results after therapy and people go on to live fairly normal lives. Is there anyone out there that can back this up from experience?

Comments

  • winthefight
    winthefight Member Posts: 162
    #2
    port
    Hi,

    You are going to love your port. It will make getting treatment and blood test easier. No more multiple sticks! I loved my port.

    As for the treatment, my first 1-2 treatments were hardest. My blood counts dropped, but the dr already expected it and had a plan to help. I returned the next day for either a procreate shot (for red blood counts) or Neupagen (bad spelling sorry) shot (for the white blood counts). Expect your hair to fall out around the third week.

    But after all of that, it was so worth! I have been in remission for 1 1/2 years. It seems scary in the beginning. But as you go through it, it will prob get better. RCHOP made me feel yukky but again I say....it is soooooooo worth it.

    I have no physical side effects. I exercise, I eat ( prob a bit too much :) ). My health is great. I am on no meds.

    Take care and please update us on your first treatment. We are cheering you on!

    Winthefight
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #3
    winthefight said:

    port
    Hi,

    You are going to love your port. It will make getting treatment and blood test easier. No more multiple sticks! I loved my port.

    As for the treatment, my first 1-2 treatments were hardest. My blood counts dropped, but the dr already expected it and had a plan to help. I returned the next day for either a procreate shot (for red blood counts) or Neupagen (bad spelling sorry) shot (for the white blood counts). Expect your hair to fall out around the third week.

    But after all of that, it was so worth! I have been in remission for 1 1/2 years. It seems scary in the beginning. But as you go through it, it will prob get better. RCHOP made me feel yukky but again I say....it is soooooooo worth it.

    I have no physical side effects. I exercise, I eat ( prob a bit too much :) ). My health is great. I am on no meds.

    Take care and please update us on your first treatment. We are cheering you on!

    Winthefight

    PORTA CATH
    Thanks so much for the reply.It just feels so strange with this in my chest. I hope I do as well as you and wish the best for all the people out there that have to deal with this in our lives.
    I believe you have the indolent follicular as well,right? I do not know how to get around on the site that well. Only been on here about 3 weeks, but I am learning. John
  • 711tom
    711tom Member Posts: 44
    #4
    COBRA666 said:

    PORTA CATH
    Thanks so much for the reply.It just feels so strange with this in my chest. I hope I do as well as you and wish the best for all the people out there that have to deal with this in our lives.
    I believe you have the indolent follicular as well,right? I do not know how to get around on the site that well. Only been on here about 3 weeks, but I am learning. John

    porta cath
    John, I left a long message to you under the topic of "progress report". I hit reply rather than post so you may have missed it. I never had a port but near the end I wish I had of gotten one. The first week of chop is the worst and even that is not that bad. I know everyone reacts differently but my chemo "partners" that went through it with me all had mior issues but we all got through it as you will. Stay strong and be sure to let the Doc's know of any issues you have, especially a fevor. You would be surprised how much they can do for most any discomfort. Best of luck and we will all be there with you.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    winthefight said:

    port
    Hi,

    You are going to love your port. It will make getting treatment and blood test easier. No more multiple sticks! I loved my port.

    As for the treatment, my first 1-2 treatments were hardest. My blood counts dropped, but the dr already expected it and had a plan to help. I returned the next day for either a procreate shot (for red blood counts) or Neupagen (bad spelling sorry) shot (for the white blood counts). Expect your hair to fall out around the third week.

    But after all of that, it was so worth! I have been in remission for 1 1/2 years. It seems scary in the beginning. But as you go through it, it will prob get better. RCHOP made me feel yukky but again I say....it is soooooooo worth it.

    I have no physical side effects. I exercise, I eat ( prob a bit too much :) ). My health is great. I am on no meds.

    Take care and please update us on your first treatment. We are cheering you on!

    Winthefight

    PORTA CATH
    I was reading your blog and wondering if tou got your stomach issue straightened out and what the problem was. John
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #6
    711tom said:

    porta cath
    John, I left a long message to you under the topic of "progress report". I hit reply rather than post so you may have missed it. I never had a port but near the end I wish I had of gotten one. The first week of chop is the worst and even that is not that bad. I know everyone reacts differently but my chemo "partners" that went through it with me all had mior issues but we all got through it as you will. Stay strong and be sure to let the Doc's know of any issues you have, especially a fevor. You would be surprised how much they can do for most any discomfort. Best of luck and we will all be there with you.

    PROGRESS REPORT
    Tom, no I never got the message. I have done the same thing and hit repl. I do not think the message will be sent after that. I really appreciate you getting back to me, it does make me feel that people do care. We all need that now. John
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #7
    COBRA666 said:

    PORTA CATH
    I was reading your blog and wondering if tou got your stomach issue straightened out and what the problem was. John

    Treatment
    John, hope the port site is feeling a little better today. I didn't have a port, but will if I need future treatments.

    As for me the first treatment was the worst. Mainly because I didn't know what to expect. I felt fine for about the first 3 days, although I didn't get much sleep due to the prednisone and day 4 started noticing some side effects. I started out with jaw pain for a few days which really threw me for a loop, but lessened with each treatment. The constipation was very bad the first time and had me in tears. I have since found out that acupuncture the day of treatment completely got rid of any problems. The meds, stool softners etc did nothing to help me. The next week was rough. I was very tired and worn out. But the last week was so much better for me and almost back to normal.

    I lost my hair (or rather it fried) at about day 14. It was hard, but very worth it.
    All of us are different and my friend who did CHOPR flew through with hardly any problems at all, just sleepy and took naps (she was 60 during her treatments) I was jealous :)

    Later treatments I did have neuropathy and leg cramps. Drink lots of water! Leg cramps were bad and didn't stop till a couple months after chemo.........but they DID get better.
    I wish you the best of luck and YOU CAN DO THIS!


    We'll help you when you need to vent. Come to the chat room sometime, there are lots of people you can talk to right away instead of waiting for comments here in the discussion groups. There is a link on the left side of the screen for chat. Come join us sometime.

    Take Care,
    Beth

    Also, yes John life does get back to normal......just a new normal and that's ok.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #8
    dixiegirl said:

    Treatment
    John, hope the port site is feeling a little better today. I didn't have a port, but will if I need future treatments.

    As for me the first treatment was the worst. Mainly because I didn't know what to expect. I felt fine for about the first 3 days, although I didn't get much sleep due to the prednisone and day 4 started noticing some side effects. I started out with jaw pain for a few days which really threw me for a loop, but lessened with each treatment. The constipation was very bad the first time and had me in tears. I have since found out that acupuncture the day of treatment completely got rid of any problems. The meds, stool softners etc did nothing to help me. The next week was rough. I was very tired and worn out. But the last week was so much better for me and almost back to normal.

    I lost my hair (or rather it fried) at about day 14. It was hard, but very worth it.
    All of us are different and my friend who did CHOPR flew through with hardly any problems at all, just sleepy and took naps (she was 60 during her treatments) I was jealous :)

    Later treatments I did have neuropathy and leg cramps. Drink lots of water! Leg cramps were bad and didn't stop till a couple months after chemo.........but they DID get better.
    I wish you the best of luck and YOU CAN DO THIS!


    We'll help you when you need to vent. Come to the chat room sometime, there are lots of people you can talk to right away instead of waiting for comments here in the discussion groups. There is a link on the left side of the screen for chat. Come join us sometime.

    Take Care,
    Beth

    Also, yes John life does get back to normal......just a new normal and that's ok.

    Treatment
    Beth you do not know how good it feels to get responses from people that are where we are right now. It feels so lonesome when you first hear that diagnosis. that is all you hear is the word CANCER. At least in my case anyway. I am sure everyone out there has been touched by it in some way. In my case Father;prostate Uncle;lung Mother in law;pancreatic Father in law;lung. I know these are a few of the deadliest cancers out there. You just never think of any cancer as treatable. Then you start reading about the advances and how far they have come. It does take a little pressure off. When they finally come up with a serum that destroys all mutant cells, then that will be the ultimate break thru. I really appreciate all your help with this and I will keep in touch. Feel free to write anytime. John
  • 711tom
    711tom Member Posts: 44
    #9
    COBRA666 said:

    Treatment
    Beth you do not know how good it feels to get responses from people that are where we are right now. It feels so lonesome when you first hear that diagnosis. that is all you hear is the word CANCER. At least in my case anyway. I am sure everyone out there has been touched by it in some way. In my case Father;prostate Uncle;lung Mother in law;pancreatic Father in law;lung. I know these are a few of the deadliest cancers out there. You just never think of any cancer as treatable. Then you start reading about the advances and how far they have come. It does take a little pressure off. When they finally come up with a serum that destroys all mutant cells, then that will be the ultimate break thru. I really appreciate all your help with this and I will keep in touch. Feel free to write anytime. John

    Good Luck John!!
    Good luck with R-CHOP John!
    John best of luck with the CHOP treatment. I started it on 12/23/93 and ended in June 94. They did not have Ritaxun then but the rest is all the same. It was not a picnic but it was ultra effective. With Ritauxin it is even more effective. I had 8 years of complete remission and upon recurrence I went to the NCI in Bethesda, MD in 01 and they (7 ONCs) unanimously told me to "wait and watch". That lasted almost 4 years before I did a clinical trial for bendamustine (TREANDA).

    Anyway, I wish you the best and know that while its no fun it really is effective. The worst was the Prednisone, I was at 100mg/day for 5 days following treatment. I ate like a horse and gained 22 lbs. The week of the treatment you went through a cycle of feeling kind of bad in different ways but by the end of the week you were back and then at the end of three weeks, right before your next blast, you were really ok. When I did R-CVP in 08, which is CHOP without Adriamycin, the Prednisone dose was only 60 mg/day and that was way better. So maybe they have cut that back for CHOP as well. I was really lucky in that my counts never dropped so i never had anemia and never had to miss a session. Played raquetball through that 6 months and was tired but probably due to the extra 22lbs, lol. The anti-nausea drugs are way better now too, I never felt sick when I did CVP in 08. Hang in there my friend and just know how fast 6 months goes by and before you know it its over.

    Merry, thanks for your inspiration, I am going to meet the BMT people and have the BMB then. My last was a year ago and I had 15% involvement, I feel fine now but again I do have some visible tumors. Has anyone read anything about this compound, DCA? They are doing clinicals in Boston and Alberta now. Sounds like a miracle but the FDA has not approved for cancer yet, however it has been used on humans for over 30 years for metabollic diseases. I will try to stay in touch more frequently!! Hope and Love to you all.
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #10
    711tom said:

    Good Luck John!!
    Good luck with R-CHOP John!
    John best of luck with the CHOP treatment. I started it on 12/23/93 and ended in June 94. They did not have Ritaxun then but the rest is all the same. It was not a picnic but it was ultra effective. With Ritauxin it is even more effective. I had 8 years of complete remission and upon recurrence I went to the NCI in Bethesda, MD in 01 and they (7 ONCs) unanimously told me to "wait and watch". That lasted almost 4 years before I did a clinical trial for bendamustine (TREANDA).

    Anyway, I wish you the best and know that while its no fun it really is effective. The worst was the Prednisone, I was at 100mg/day for 5 days following treatment. I ate like a horse and gained 22 lbs. The week of the treatment you went through a cycle of feeling kind of bad in different ways but by the end of the week you were back and then at the end of three weeks, right before your next blast, you were really ok. When I did R-CVP in 08, which is CHOP without Adriamycin, the Prednisone dose was only 60 mg/day and that was way better. So maybe they have cut that back for CHOP as well. I was really lucky in that my counts never dropped so i never had anemia and never had to miss a session. Played raquetball through that 6 months and was tired but probably due to the extra 22lbs, lol. The anti-nausea drugs are way better now too, I never felt sick when I did CVP in 08. Hang in there my friend and just know how fast 6 months goes by and before you know it its over.

    Merry, thanks for your inspiration, I am going to meet the BMT people and have the BMB then. My last was a year ago and I had 15% involvement, I feel fine now but again I do have some visible tumors. Has anyone read anything about this compound, DCA? They are doing clinicals in Boston and Alberta now. Sounds like a miracle but the FDA has not approved for cancer yet, however it has been used on humans for over 30 years for metabollic diseases. I will try to stay in touch more frequently!! Hope and Love to you all.

    Prednisone
    Tom,

    I did CVP + Rituxan in 2006 and did the 100 mg for 3 days then dropped 20 every day till done on day 7. I gained 30 pounds too...........ate everything not locked down, couldn't sleep so eating just seemed right. LOL.

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