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Fifth time isn't the charm.

yesyes2
Posts: 567
Joined: Jul 2009

Just wanted to share my current predicament of sorts.  I have a very long cancer history going back over 25 years.  First with breast cancer in 1992.  In Jan. 2008 diagnosed with a very rare NHL, only 200 reported cases in the US at that time.  Than 6 months later a breast cancer in my other breast was picked up on PET?CT.  Than in June of the following year I had a recurrance of my NHL.  I have been closely watched since than as although the doctors don't think I will relapse again the circumstances are still the same for another round of NHL.  And this takes us to 2018 when I visited my Hemo/Onc at UCSF.  He looked at my blood work and said I now had my fifth cancer.  It looked like a rare Myloproliferative disease.  After 13 vials of blood and facing a possible bone marrow biopsy still, I have a progressive non curable disease of my bone marrow called Polycythemia Vera.  There are only three drugs available, all sounding horrible to me, or being bled every week.  My marrow is confused, something altered my DNA and I am producing too many red blood cells and platlets, causing my blood to be thicker than it should be.  If I don't treat I am at a very high risk of having a stroke or heart attack in the 40 to 50% in the next 2 years.

Guess I just need to vent some as there currently is little research happening and only 2 or 3 specialists for this disease in California.  Luckly one is at Stanford which is only 50 miles away.  I am hoping I can get into a stage 3 trial looking for de nova patients.  If not I will be taking a drug which I really don't want to take, as they have a lot of side effects and all the drugs are doing is slowing the progression, there isn't remissions.  The only current cure is a donar BMT, which I am too old for.  My 25 year journey with Cancer has always been focused on quality of life.  My drugs given for RH caused my lymphomas and my history of chemos and radiation may have contributed to my current situation.  But for the most part they have been a good 30 years and I am thankful I have had all of them.

As a side bar my cat Daisy started chemo 2 weeks ago for a stomach lymphoma.  At my house when it rains it pours.  She appears to be doing well and we hope she stays good for many moths to come.

If I said I wasn't pissed and angry I would be lying.  So thanks for letting me vent.  I know this isn't a lymphoma but I have yet to find a discussion board for Myloproliferative Neoplasams.  I would love to discuss with someone who has faced this so I am putting it out there if any of the great people on this board know of anyone who is dealing with this.

Thanks for reading.

Leslie

Sten's picture
Sten
Posts: 160
Joined: Apr 2013

Hi Leslie,

Yes, life can be hard. I hope that you will find a way of living with this and get some quality of life.

Best regards,

Sten

PBL
Posts: 163
Joined: Jul 2016

I am afraid I cannot be of much assistance - just wanted to express sympathy.

I do believe, however, that you will find among the "old-timers" here someone with similar consequences of cancer (in general) and lymphoma (in particular) treatments - myelodysplastic syndrome at least, if not polycythemia.

I also believe that you continue to "belong" here - as this is, in a way, part of your lymphoma journey. We are all aware of the fact that "life-saving" treatments come at a cost, and may lead to such consequences down the road.

Hugs,

PBL

 

po18guy
Posts: 858
Joined: Nov 2011

I hope that you have a large plate, because there is certainly a lot on it. However, if you can, allow the past to fade, as carrying it takes up space and energy that you need for right now.

Regarding the trial, what you are seeking is time. In that time, additional discoveries and trials will appear. I am now in my fourth clinical trial. As to transplant, age limits depend on the facility. Mini and moderate intensity transplants are offered - I'm the recipient of one of them. As to a board for myeloproliferative neoplasms, I know that you would be welcome in the Leukemia/MDS forum at www.cancerforums.net. (wink wink). 

ShadyGuy's picture
ShadyGuy
Posts: 261
Joined: Jan 2017

but four people in my (very large) family have/had polycythemia. No one has died of it and it seems to be controllable with regular blood withdrawal and drugs. My sister who is now deceased survived with it for a very long time but sucuumbed to a different cancer after living a normal lifespan. My two nephews are in their 30’s and as long as they get the blood draws seem to be fine. Sometimes they get busy and neglect to go to the hematologist and become tired and lethargic. They are active and happy people raising families. One common factor I have observed is that all of the three of them are/were smokers. That said, my 1st cousin’s wife, originally from Poland (no genetic connection to the others) , has it even though she has never smoked. She too is doing just fine. All my best to you. Hope you find this bit of anecdotal info encouraging. Hang tough.

Evarista
Posts: 208
Joined: May 2017

Sorry to hear about this, YY.  Hope the treatments go easy...Hydroxyurea?  

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