Post Hodgkins Lymphoma now diagnosed with Breast cancer

Max Former Hodgkins Stage 3 said:

Big 4-0
What chemo did you use ?

I know MOPP was the norm back then. I have a survivor friend who has a story similiar to yours, and he has shared some of the horrors of MOPP. He also says bone marrow biopsies back then were drawn from the heel, at least for him. I know the upper hip is now the norm for the bone marrow biopsy draw. He was in tenth grade when diagnosed. He was one of three kids in his high school diagnosed at the same time, and he was the only survivor.

Congrats !

max

clearly not alone
Cathy- congratulations on today, your big anniversary. HUGE. That's an incredible milestone. I'm thrilled for you and I wish you many, many more anniversaries. I would love to hear more about the vocal chord issue. I did see and ENT at Mass General last year but I'm not sure they were particularly familiar with the problem as it relates to radiation treatment. Is it possible to contact you directly via email? not sure how that works as I am so new to this. In any event, congrats again!

Jim- thanks to you for the link you posted. I've already been on it. GREAT resource.

Max- I did have MOPP. It was pure hell. Things were a lot different in those days. No oncology treatment centers, no reclining chairs, no TV's, no anti nausea meds. I got my chemo on a stretcher in a cubicle at the Emergency Ward of my local hospital. I got violently ill for days. I was so tired that my parents used to take turns holding up my head so I wouldn't vomit in my sleep. They tried putting a tourniquet around my scalp to keep me from losing all my hair but all it did was to give me a migraine headache on top of everything else. I thankfully don't remember too many bone marrow draws but I want to say it was in the base of my spine. Like your friend I was one of several kids from my high school who were diagnosed within a relatively short period of time- five or six in less than ten years. One other with Hodgkins, one or two with lymphoma, one with sarcoma I think. I knew and met them all. My dad was the principal of our high school and asked me to talk with them, to encourage them with my story. I was happy to do it. Sadly they are all gone- died within a year or so of their diagnosis. Sometimes being a survivor is not easy.

Thanks for all your good wishes. I'm glad to be in the company of some pretty amazing people! As new as I am to this it has already been an experience of a lifetime! Take care- Erin

40yearsandcounting said:

clearly not alone
Cathy- congratulations on today, your big anniversary. HUGE. That's an incredible milestone. I'm thrilled for you and I wish you many, many more anniversaries. I would love to hear more about the vocal chord issue. I did see and ENT at Mass General last year but I'm not sure they were particularly familiar with the problem as it relates to radiation treatment. Is it possible to contact you directly via email? not sure how that works as I am so new to this. In any event, congrats again!

Jim- thanks to you for the link you posted. I've already been on it. GREAT resource.

Max- I did have MOPP. It was pure hell. Things were a lot different in those days. No oncology treatment centers, no reclining chairs, no TV's, no anti nausea meds. I got my chemo on a stretcher in a cubicle at the Emergency Ward of my local hospital. I got violently ill for days. I was so tired that my parents used to take turns holding up my head so I wouldn't vomit in my sleep. They tried putting a tourniquet around my scalp to keep me from losing all my hair but all it did was to give me a migraine headache on top of everything else. I thankfully don't remember too many bone marrow draws but I want to say it was in the base of my spine. Like your friend I was one of several kids from my high school who were diagnosed within a relatively short period of time- five or six in less than ten years. One other with Hodgkins, one or two with lymphoma, one with sarcoma I think. I knew and met them all. My dad was the principal of our high school and asked me to talk with them, to encourage them with my story. I was happy to do it. Sadly they are all gone- died within a year or so of their diagnosis. Sometimes being a survivor is not easy.

Thanks for all your good wishes. I'm glad to be in the company of some pretty amazing people! As new as I am to this it has already been an experience of a lifetime! Take care- Erin

Hi Erin,
I sent you a
Hi Erin,

I sent you a private message on this site on how to stay in touch!

Cathy

marysg said:

Mammogram showing changes.
Hi,

Looking for advise. My yearly mammogram came back showing changes in my right breast. Of course that is all they would tell me over the phone. Diagnosed with HL in 1987 at the age of 25. Was treated with chemo and radiation. Tumor was spreading up to my right clavical/cervical area, so my right breast would have gotten more radiation. Of course I have to wait until next week to follow up with U/S and more views of breast due to the holidays. Looking for advise as to what to request or how to procede at the appointment.

I had a sarcoma in my right arm in 2010 and had a bad experience dealing with doctors to get them to treat. I did end up going to the Mayo Clinic in Rochester, MN for that problem. They were great in treating and with the follow up.

I am finding the most information by reading this survivors network. Any advise?

Thanks, Mary

Hi Mary,
I replied to your

Hi Mary,

I replied to your message but it got lost with the recent update of this web site.  I probably said it all before in previous posts on this topic posted above. 

Have you had breast MRI's in addition to your mammos?  One every 6 mos alternating. 

I think the key for us is to have someone who is knowledgeable about our late effects from Hodgkins Treatments from our PCP to radiologist, surgeon, oncologist etc.  I have heard the Mayo deals with survivors late effects, glad to hear you had a positive experience there.

I'm sorry that this is happening to you during the Holidays, or at all.  I had a whirlwind of appointments at MSKCC, 3 appts in 10 days last week.  It was emotionally and financially draining,  BUT, all is well for me.  I had a lump at my mx site.  Because of the Hodgkins and Breast Cancer hx, the doctors recommended I get a biopsy right away.  I got the news Friday before Christmas, it was benign!! 

I find comfort knowing all my doctors deal with LT survivors of Hodgkins on a daily basis.  I hope your doctor can manage and speed things up for your results.  Of course I hope you have good news.

All the best,

Cathy

 

sslemoine said:

Rapid Heart Rate

Cathy,

Thanks for your posts and information especially on breast cancer risk and rapid heart rate.  I know you go to a late effects clinic and they monitor you closely.  I do have the mammo and breast MRI on rotating 6 mos. basis.  So far so good.  But, on the rapid heart rate have they put you on any beta blocker/blood pressure meds to try to lower your heart rate?  I finally found a cardiologist interested and knowledgable in radiation late effects.  He did all the workups to get a baseline and then started me on Toprol.  I am now on in 2x a day and it has brought my heart rate down slightly -- from ave of 100 - 110 to low 90's.  Has your dr. said what our target heart rate should/could be?  How often does your dr. evaluate your cardio status - - stress test, ultrasound, etc.?  I think I'm supposed to go back to the cardiologist in March, which would be 6 mos. from starting the Toprol.

I appreciate you sharing your experience and knowledge.

Sara

Sara,
It's wonderful you were

Sara,

It's wonderful you were able to find a cardiologist who is knowledge about radiated hearts.  My HR is usually 100 or so, 90 when I'm sitting down.  We had discussed medication when the time comes but I guess I haven'r gotten to that point yet.  I know my PCP is still incredulous that it doesn't bother me.  I guess I'm so use to it.  I did have problems last winter when it was above 130. At that time, I had my 6 or 7th bout of shingles in a short time, was traveling to NYC for PT and trying to get ready for Christmas.  Adding to that my long term relationship with my original PCP was deteriorating.  He just didn't get the late effects.  I was sick and stressed.  As things resolved and I changed PCP's, my heart rate got back to my "normal".  My old pcp tried to give me meds for anxiety but I knew it wasn't anxiety.  He didn't buy the HHR is a late effect from rads and chemo. 

My doctor hasn't stated what a target should be just that when I get uncomfortable with it, it may be time for meds.  Now you probably know more that I but I believe we need to be careful on the type of beta blocker we take.  Our lungs may be effected from from rads and chemo so it may be recommended to stay away from the beta blocker that effects the lungs. For me, I'm tryimg to minimize taking meds for as long as I can and as I said, I'm not really bothered by the HHR.  Oh, I should mention it gets in the way of what exercising I can do.  I don't last very long on the elipitical, walking is better tolerated for me.

I had been going for yearly echos since radiation ended 23 years ago.  As valve problems started to show up, I started stress echos.  I had the stress echos done every year for 2 yrs when I met my specialist.  Since the valves are stable I now go for yearly rest echos.  I have mild to moderate valve disease. My EF was 62% this last time so that's pretty good. 

Good Luck Sara, stay healthy! 

Cathy

Schnab72 said:

I found this thread yesterday

I found this thread yesterday and couldn't believe what I was reading. I was treated for Hodgkins in1987 with mantle radiation followed by radiation to the spleen. I have been treated for hypothyroid attributed to the radiation since 5 years of being hodgkins free. I have since had trouble swallowing  having my esophagus stretched twice and also have a cardiologist watching my leaky heart valves that were discovered by accident. I had no idea that these results of radiation treatment were common and were shared by others.

i was diagnosed with breast cancer on Dec 7th. I am told that I cannot have more radiation and will be having a mastectomy. I would like to have reconstructive surgery at the same time. I've seen two plastic surgeons and am getting conflicting opinions on the type of reconstruction recommended fore someone with past radiation to the chest and abdomen. One Dr. recommends DIEP flap because tissue and skin that has been radiated have a 45% failure with implants leading to either capsular contraction or the skin breaking down while being stretched with expanders. The other Dr. recommends implants saying that the blood vessels in radiated skin in the chest and abdomen are often damaged and won't allow for good blood supply to the transplanted tissue in a flap surgery. 

Has anyone with past radiation for hodgkins had success with either silicone implants with expanders or DIEP flap reconstruction?

So sorry Schnab that you are

So sorry Schnab that you are facing yet another effect from treatments.  I did not have reconstruction but I am aware of other HD dx with BC survivors that did.  They have posted on the ACOR website under LT Survivors mail list.  Good Luck along this new journey.

Cathy

Schnab72 said:

I found this thread yesterday

I found this thread yesterday and couldn't believe what I was reading. I was treated for Hodgkins in1987 with mantle radiation followed by radiation to the spleen. I have been treated for hypothyroid attributed to the radiation since 5 years of being hodgkins free. I have since had trouble swallowing  having my esophagus stretched twice and also have a cardiologist watching my leaky heart valves that were discovered by accident. I had no idea that these results of radiation treatment were common and were shared by others.

i was diagnosed with breast cancer on Dec 7th. I am told that I cannot have more radiation and will be having a mastectomy. I would like to have reconstructive surgery at the same time. I've seen two plastic surgeons and am getting conflicting opinions on the type of reconstruction recommended fore someone with past radiation to the chest and abdomen. One Dr. recommends DIEP flap because tissue and skin that has been radiated have a 45% failure with implants leading to either capsular contraction or the skin breaking down while being stretched with expanders. The other Dr. recommends implants saying that the blood vessels in radiated skin in the chest and abdomen are often damaged and won't allow for good blood supply to the transplanted tissue in a flap surgery. 

Has anyone with past radiation for hodgkins had success with either silicone implants with expanders or DIEP flap reconstruction?

Hi Schnab72,

I just found this website yesterday and can't believe all the similar experiences people have had.  I'm sure that by now you've had your surgery and hope you are recovering well.   I had HL in 1973 at age 19, underwent full mantle radiation therapy for 12 weeks.  The amount of radiation applied at that time was extremely high, so much worse than today.  I also had staging laparatomies to my upper and lower body with spleen removal.  I survived the treatment and I've never had a reccurrence.  I had ductal carcinoma in situ in left breast in 1991, with a modified radical mastectomy.  No radiation or chemo after that.  My plastic surgeon used a tissue expander and silicone implants (one stacked on another for that realistic look), with a silicone implant in the right breast for symmetry.  Was then diagnosed with the same in the right breast in 1998.  By that time the sentinel node procedure was in use, so I had a skin-saving mastectomy with another silicone implant.  Due to the extreme thinness of my tissues and body fat layer due to the past radiation damage, the surgical incision over my right implant just wouldn't heal properly, so my surgeon gave up on it and did a flap procedure to cover the implant.  he used the muscle from my right upper back to wrap around to the front.  That healed well.  The cosmetic effect wasn't as good as the earlier surgery on the left, but what are you going to do?  Most of the time, for reconstruction, the abdominal muscle flap is used to cover the implant.  I couldn't because I didn't have enough body fat.  I understood at the time that the back muscle flap is not the usual route.  I do have some lymphedema in the left arm, due to the removal of too many lymph nodes in my left armpit, and must wear a compression sleeve.  As it stands today, I can say that both types of reconstruction worked for me.  If it's any comfort to you, I've been told by my surgeon that he's never had so little to work with before, and yet, here I am so many years later doing fine with both implants.  If I had it to do over again, I'd still have had the reconstruction surgery.  It puts a "little something between me and the world", as my surgeon used to say. 

Best wishes; I hope to hear how you are doing.

SusanO

 

40yearsandcounting said:

connecting with others
Jim thanks so much!!

I've been able to read some of the posts from you and Cathy and they are all very reassuring and helpful. Just being in the company of others who have been through this is incredibly powerful.

Wondering if you have any ideas for how I might be in touch with survivors who have been out there as long as I have (or longer certainly!!) I'm curious to know if other 40 plus year survivors have had other health issues that I should be aware of. I've had some of the same problems that have already been mentioned. It would be helpful to know if there are other things I should be thinking about. Not looking for trouble, just curious!!

Hope you are doing well, and thanks again-

Dana Farber LTS Doc?

Hello, congratulations 40 plus!

I am a 40 year survivor of HL. I just stumbled on to this site.  I am thinking of changing oncologists and read that you had Dana Farber doctor that was experienced in long term survivors. Would you mind sharing name?  

Thank you,

 

 

 

40yearsurvivorHL said:

Dana Farber LTS Doc?

Hello, congratulations 40 plus!

I am a 40 year survivor of HL. I just stumbled on to this site.  I am thinking of changing oncologists and read that you had Dana Farber doctor that was experienced in long term survivors. Would you mind sharing name?  

Thank you,

 

 

 

Contact

40yearsurvivorHL,

"40 Plus" last wrote here years ago, but did log on a few months ago, in January.  (Members can determine this simply by clicking on the member's screen name).  You would probably make contact earsier and a lot faster if you sent her an email via the CSN function here, since this will alert her via an email from CNS itself.   

Congrats on your 40 wonderful years.

Just trying to assist,

max