Scary scary-please help and advise

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8/27/2010 1:28pm
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Replies: 9

Started feeling slight pains in my lower back about 2 months ago and had been feeling slightly nauseous for some time too, explained both away with stress and studying too hard for my final exams. I then started having really bad pains in my shoulder and couldn't sleep at night. Long and short of it (and lots of poking and tests later) I have metastases to my liver, lungs and bones.

For the last 4 years it has been lesions and mets 'just in the skin', I never imagined it would come to this. I've started six rounds of dacarbazine, each round takes place once every three weeks and i've also started a bone strenthening treatment, zometa, which will be given indefinitely.

Anybody have any positive stories about recovery from this extent of mets? i would really love to hear some.... there are so much negative stories out there.

Could you also please advise about the treatment I'm on? Is this enough?

Thank you so much!

 

 

 

Shaz,

I am so sorry you are going through this. You have found a wonderful group of people here that are caring and knowledgeable about melanoma and the many treatments offered. They are willing to share what they know and have experienced. I am sure others who have more knowledge that I do will respond and give you their thoughts about your treatment plan. Are you presently under the care of a melanoma specialist....I do know that is very important?

We have gotten a new format on this board and people have been a little slower to respond than usual so don't hesitate to post again if you don't get many replies.

Take care,

molly

 

 

Shaz,

Thanks for sharing your story.  Many of us are in similar situations, and it is scary.  Know that there are MANY success stories.  I am in a clinical trial through the Angeles Clinic taking Taxotere and YM155 for metz in my left lung.  I am hoping to be one of those success stories soon!

I think the most important element in treatment is to make sure you are working with a Dr. who has extensive experience with Melanoma.  There are so many clinical trials going on with very promising drugs!  Your doctor has to help you access the treatment that is best for you.  Where do you live?  I'm sure that others on this board can suggest clinics near you if necessary.  I am being treated by the John Wayne Cancer Center / Angeles Clinic in Santa Monica, CA.  But, there are many centers that can help you find the best treatment, or confirm what you are currently doing. 

Bless you in your efforts.  Keep up the faith!

 

Bob

Anonymous - (8/27/2010 - 3:52pm)

Bob,

 

I hope you are a success story too.

 

I am thinking about doing the trial you are in. What are the side effects??! What is the treament like?

 

Thanks

Anny,

Side effects have not been bad... kind of the usual I guess.  Metalic taste in mouth, a little nausea, hair loss, about 50% loss of energy/stamina, and a little rashing.  It is a 21 day cycle - chemo drug given for one hour on first day, then YM155 slowly over 7 days - use a small pump and meds in a fanny pack like thing.  It's do-able, not at all uncomfortable.  All meds given through a port that was surgically implanted before we started. 

I think this trial is available in various locations. 

 

Bob

Anny,

 

I am also on this trial through univ of denver.  Just completed 4th round getting scans on Monday to see results.  Side effects are not that bad.  I have hair thinning but not bad, take pepcid complete the first week of the cycle, some fatige, rashes on the side of hands and some anerexia.  Bounce back very quickly once ym155 is removed.  Bob how are you doing on this study.

melanoma is a word...not a sentence

I'm doing OK.   Similar to you, the side effects have been mild to moderate.  I will have scans on Tuesday and will know more after that! 

 

Bob

Anonymous - (8/27/2010 - 3:28pm)

Shaz,

 

I am sosorry to hear your news. I also have lower back pain. Would you describe your pain???? Where were the mets that caused your lower back pain. I am having scans soon but I am scared like you.

Thanks you for replying to my post.

Wishing you success with your treatment.

Hi Shaz

sorry to hear about your progression. First thing is to make sure you are being treated by a Melanoma Specialist in a recognised Melanoma Center. Please let us know where you are being treated. If you already have not done so ask to have a tumor sample tested for genetic Mutations. There are several new drugs in Trials which have shown some great results. Examples are BRAF,CKIT NRAS Mutations. The other drug is Ippilimumab which works by pulling off the brakes on your Immune system. This new drug is also being trialed in combination with Temador a chemo which is the same as Dacarbazine.

Melanoma is one of the most immune responsive cancers, so yes it can be beaten and yes there are more and more positive stories today compared to years ago, anything is possible.

best wishes

James

Shaz I was diagnosed liver mets dec 2009. The doctor immediately got me enrolled in the YM155 study. After 6 weeks I was tested and the study failed for me. They told me the best bet was Bio-Chemo. I started treatment in March. I have had a 70 to 80% reduction in tumor sizes throughout my body. I am on maintenance IL-2 now and back to work full time.

Everyone has responded to make sure you are seeing a melanoma specialist, I concur that is so important.

Please stay on top of your situation. Have a hard talk with your doctor and feel good about your decision whatever that may be.

Thoughts and Prayers for You and Family Shaz.

Rocky (Stage IV Liver Mets)