I had a lot of lymph and fibrosis start to really set in after my ND on 9/11. and during that ND I had my left tonsil out. Well the pressure got to be too much and I had a bad hemmorage from tonsil bed. I was taken by ambulance to the ER. where they took me into surgery to coterize the wound.It seems as if the lymph fluid that was clogging me up had drained away with all the blood from the hemmorage. And my neck was a lot loser. well 7 days after ER had stopped the bleeding. And the lymph is back almost as bad as it was the last time right before the bleeding! And I am worried that I will have a reccuance of the bleeding due to the pressure being back.(I have low platelets that make it easier for me to bleed in the first place.) I don't want to start over again. I am afraid to move. I think I may have posted this before but not sure. (pain meds). I was thinking that they could give me some platlets to get me through the healing process. I lost over five pounds of blood last time. Oh and I think this is to PaulB. 33 out of 36 were indeed found to be cancerous. I verified it. My prognosis is not good at all no more surgery is possible. No more radiation is possible. so that leaves Med. ONC. And citplatsin is out due to hiv/aids. so they have offered me Erbitux again. but this would be in their words more palitive approach. buying time. until some mirical comes up. WE are all on the lookout for studies. I just want to be out of the clear of this looming bleeding situation so I can get on with the rest of my life. And find something that is curative. sorry for all the typos Shawn U

I am not a medical person, but some members of my ITP group on facebook sometimes have their low platelets treated with IV Immunoglobulin, or with Rituximab. Might be worth asking about.
I sure hope your bleeding situation clears up very soon. Sending lots of positive thoughts your way!

Thank you lotsacats (love the name). And I will most def. look into the leads you gave me. I will be thinking of you at night when I do my cancer get outta here meditations. I hope that Radiation and Cisplatin go as smooth as possible. Shawn U.

Thank you for clarifying that, Shawn. It is a large number of nodes involved, which is not usually a good indicator, but maybe more importantly is there was no ECE, extrascapsular extension, and these nodes were taken out with clear margins. It also may depend on where the lymph's were in the lymph chain, and their size, for additional prognostic factors, so even though there were many involved, it still may be ok, as opposed to one with ECE, positive margins, low in the lymph chain.

Although each case is different, I know several oropharyngeal cancer patients, tonsil, base of tingue, with hiv positive status that had full dose chemo, radiation, and treatment again for recurrences with surgery, chemoradiation. Maybe you should get a 2nd opinion, and from one who is more familiar with this dual status. As mentioned, there maybe other treatment options available, even with your conditions, and depends on the experience of the doctor, so what one may not treat, another may be able to, and positive margins doesn't necessarily mean cancer will return, but may 30-50% of the time.

Probably right now you may want to get over this current hurdle, which is still early in the recovery phase. Tonsil surgery in adults can be complicated for many, and have unusual bleeding, compounded by your low platelets. Platelets have a life span of 4-5 days, and if low enough, may give you platelet transfusion, medications. I have low Hemaglobin, and get transfusions or epogen shots if low enough, and both these are produced in the bone marrow, which can be compromised from cancer treatment, compounded by your status.

For all your concerns, maybe ask the doctor to clarify them, adress any issues, to help. Good luck.

Oh Shawn, I am so sorry that you are going through all this, and have the added worries of HIV, bleeding -- as if cancer weren't enough! No wonder you feel like you can't move. You will feel better when you do, though.

Love hearing that you meditate, I do too.

Hugs,

Mama

Hey paulB, I am going to ask for a platelet infusion. They are usually reluctant in giving them except in emergencies. Due to the fact that the more you get the less effective and shorter duration of increased platelet counts. But I would call this a possible emergency. I would think that my doctors would want to avoid another bleed. As it is like starting the healing process all over again. it has been 8 days since the last bleed and I can feel the pain of the scabs starting to come off. I am constantly drinking ice cold water to try to constrict the blood vessels. and to keep the scabs in place as long as I can. I feel like my eyeballs are floating and urinate only the clearest of pee. so I am most def. not dehydrated. But I must eat more. My oral health is suffering, as I am afraid to really get in there to brush properly. Thank you for your response. Are you ready for another RND? Best of luck with that. you are directly in the path of my positive meditation against the beast! take care...Shawn U.

Thank you for the kind words Mama, and I love hugs so right back atcha! you are in my meditation exercises. Shawn U.

Ready or not, but wish it was sooner than later. Twice last year, before my surgeries, I developed two more recurrences within a month of scanning, but were dealt with at the scheduled surgery, how lucky is that. Things don't move fast here like everything else. Surgery takes a month or more after diagnosis. My pet was suspicious back on August 12th, and not having surgery until October 16th leaving two months for confirmed cancer to grow.