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Melanoma out of control

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      I just finished my rounds of Temodar.  Then they did a CT Scan.  Dr. said nothing was growing.  I asked about a specific spot.(lymph node by

      arm pit..  They called 2 days later and said my Melanoma has grown 30%.  Thanks a lot for correct comparison. What is use of taking treatment

      when you get this kind of results. I have 3-4 spots in me. (lymph node, lung, back, kidney,side of face)   Now Dr. says he wants to wait for this Ipilimumab to be

      I just finished my rounds of Temodar.  Then they did a CT Scan.  Dr. said nothing was growing.  I asked about a specific spot.(lymph node by

      arm pit..  They called 2 days later and said my Melanoma has grown 30%.  Thanks a lot for correct comparison. What is use of taking treatment

      when you get this kind of results. I have 3-4 spots in me. (lymph node, lung, back, kidney,side of face)   Now Dr. says he wants to wait for this Ipilimumab to be

      approved by FDA.  I have hearts disease (over 40 yrs.) so don’t know what I can take.  I wish I knew what would happen if I did nothing. The

      lumps by the arm pit is about size of large 50 cent piece, and one by ear is same or alttle larger.  I have changed Dr. once and will not change

      again. I will not spend what estate I have running around the country letting these Doctors make guesses on what to use.

      Has anyone used this Ipilimumab medicine?   What are side effects?   I don’t have any arteries left in heart, only bypasses so I  get Angina

      very easily.  I am 78 yr. old male so maybe there is nothing that can be done and my Dr. just won’t tell me that.  Any info. will be appreciated.

      Thanks,   Retired in Nebr.

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          If you have had treatment for advanced melanoma and failed on that treatment you may be eligible for ipilumumab through the expanded access protocol (what is sometimes called compassionate use).   This would be available now, vs. waiting what is likely to be several months for approval.




            Yes, do consider compassionate ipi…I finished my first round of temodar two weeks ago, saw doctor today and she was not happy..I have progression.  Ipi compassionate will be coming to Montreal and they think within 2 weeks…so before I start second round of temodar, I will be in touch with clinical nurse. If ipi starts soon, that will be where I will land BUT if ipi is delayed I will then do another round of temodar (she says ‘rather than do nothing’).  Of course, there is a 28-day wait to clean out system before starting ipi that is why she is hoping that it arrives very soon. She does advise that ipi will be much harsher on the system and have to be closely monitored.

            Charlie S

              Hi there Retired, most of the side effects related to ipilimumab are auto-immune type disorders, Deep Vein Thrombosis, in your case would seem to be of a higher concern.

                Here is a link to an on-line patient community that is devoted excluisively to ipi side effects that includes a bulletin board which you find helpful.

              Also, this BB recently changed format and many people are adjusting to how to use it, so I would kindly suggest for more responses that you post anew and put the subject as "IPI Side Effect Experience/Results".

              It isn’t clear to me about your disease progression………are the three or four spots you mentioned new on this scan or is it just the armpit (axilla) node that grew?  Were you on the 28 day regimen of Temador?  How long since your last scan and what was the difference?

              I am no doctor, but I have had melanoma for now 23 years, 14 of which have been Stage IV and still have active disease, so the thoughts/suggestions below are based on that.

              IPI:  …… an anti-CTLA Blocker, is not a silver bullet and does take some time to work……..if it does; and in a subset of patients,it will, but melanoma is a transient disease and repeatable responses amongst all melanoma patients is still elusive.  This is not to say it is not an advancement, but it is not the be all to end all and it is a crock of shit for a doctor to think and therefore suggest it is and just say "oh, we’ll wait on that to be approved".  As Tim mentioned, IPI (though still limited) IS available for compassionate use immediately, so it would seem a proactive doctor would explore that RIGHT NOW.  This approach will take time.  Probably 6 to 8 weeks at a minimum.  I have been offered enrollment in IP trials but decilined because the science did not make sense in my individual case, mainly because time was of the essence.

              Inhibitors: Such as BRAF, MEK, PTEN, cKit, and NRAS are options to explore via clinical trials.  These targeted mutations offer options as well.  If they work, they usually work with great speed, but durable response is problematic.  You would be wise to be tested for these five mutations.  This can be done with existing tissue from your pathologist or new tissue could be obtained from any one of your lesions.  This approach will also take time and also will probably take 6 to 8 weeks minimum.  Since I do not have any of the beforementioned mutations, I have not and will not be eligble to recive them.

              Since IPI or any one of the Inhibitors takes time to get, receive and administer,  below are some other thoughts to keep after melanoma in the meanwhile.

              Temador (temozolomide) which you have been taking, is thought to disrupt the cellular activity of cancer, though it is not completely understood how. It is sometimes combined with Thalidomide(thalomid) which is thought to restrict  tumor feeding blood flow for synergy.  Lomustine, another cellular disruptor has also been added to the mix as an approach..  This three drug combination can be prescribed and adminstered immediately by your oncologist.  Beyond the side effects you have all ready experienced with Temador, there would be few more………other than having to sign on to using appropriate birth control measures .  I have used these three drugs.

              Low Dose IL2:  There is much discussion about HI-Dose Interleukin 2, but not so much about lo-dose administration.  Lo-dose can be a series of self injected interleukin 2 so as to have a combined immune response over time rather than an escalated dose to discover immune response in a short period of time.  The advantage of lo-dose is the absence of the sometimes life threatening side effects generally associated with hi-dose.  Lo dose is appropriate for those with heart disease or breathing issues.  I have done hi-dose as well as lo dose IL2.

              Intra-Lesional Direct Injection:  This is shooting drugs right into the lesion in question.  Interferon alpha 2-b, interferon alpha and 1-A as well as Interleukin 2, 7, 11 and 21 have been used.  I have done this with all the drugs mentioned. Other than some minor skin irritation and being generally irritated by having to shoot up, side effects are minimal.

              Doctors: I have had the pleasure of firing more doctors than most people have ever had in their entire life.  You might consider indulging yourself in that euphoric experience if you are not satisfied with what your doctor is telling you or doing to you.  This is not to say that I think all doctors are assholes, because they are not, but if they cannot get or are unwilling or unable to answer your questions when you ask or recognize that they work for you and are getting paid handsomely to do so, then fire them.   At the very least get another opinion. 

              You are driving the bus here, it is your choices because it is your chances.

              I know this is long and probably more than you wanted to know and if you don’t like my thoughts; well, that’s okay too, because all I would like you to do is create YOUR thoughts and not be constrained by just what your doctors say.

              You may well live longer than all of us or you may not, but it is up to you to pave the path.

              Hope this helps.

              Charlie S







                  Ok everyone, I think I got more responses than I really needed. I just re read them including the link someone sent concerning side effects. The spots I have in me are 1. Lump in front of right ear 2. Lump in lymph node by right armpit. 3. One in spine so they tell me  4. One in lung and maybe one on a kidney???? (Lumps are under skin)

                  With my heart disease, and it is quite bad, 7 bypasses, 3-4 stents,27 holes burned in heart muscle, and a few other things. I have to wear a nitro-patch to walk one block.  I get angina very easily and quickly.  I had a heart attack at age 38 and am 78 now. Have had great heart Doctors but heart is about worn out I am afraid. My operations, etc. have helped build the Heart Hospital in Lincoln, NE.

                  If and whenever this Ipilimumab is made available to me, I have some serious thinking to do. The chemo I took 3-4 yrs ago was hard on heart.  This recent Temodar didn’t bother too much but maybe it was a low dose. 330mg every day for 5 days then 23 days off.  I did 3 months of this.  Side effects were not much. Ipilimumab might be a "Kevorkian Treatment"

                  Anyway thank you all for your responses.  More than I wanted to know but needed to know. Maybe some of this heart medications I take every day will attack the Melanoma. I have had a  good life.






                  I don't know if anyone reads this far down the line on the Bullitin Bd but will ask.   I am waiting  to take IPI maybe.  I have d

                  taken Temodar but didn't help.   I have a question for anyone.    If I don't do anything, what might happen to these spots I have.   A lump in lymph node near armpit?    A spot on my lower back. Spine I guess.    A spot in my lung.   The lymph node shoots some pain in my shoulder area now occasionally.   Will it get worse.  I have a fairly large lump under skin in front of right ear.   Not too noticable .    anyone think it will get bigger if I dont take anything.   My hearts is so darn bad I don't think I can take much chemo.   My 3 months of Temodar was 330 mg daily for 5 days then 23 days off.  Not many side effects.       I just don't know what to do.


                      You and I have talked before via email. I understand, at least at some level, the heart issues you have. If I were you, I'd give IPI a try. You can research the drug and its potential side effects and then decide. Otherwise if left untreated, the melanoma will most likely continue to grow and possibly spread. If you have a spot on your spine, it may eventually cause some major pain . There are no easy answers but only the one that you are most comfortable with. To do nothing….well the outcome is most likely what you'd expect but then again, nothing is for certain. Get your doc to try to get you IPI for compassionate use…give it a try,,,,you may be surprised that the side effects are tolerable and that it actually does work to reduce or possibly eliminate the tumors. Best wishes to you. Remain hopeful.

                      Al Cato

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